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A Day of Living with Autoimmune Encephalitis

A Day of Living with Autoimmune Encephalitis

Bettina Goodwin Tony on a bad day Aug 2020 - A Day of Living with Autoimmune EncephalitisNovember 7, 2020 | By Bettina Goodwin, caregiver to her husband Tony

It’s morning and you open your eyes, groaning.

“How do you feel?” you’re asked, as you struggle to find the words to explain the fogginess and confusion — the sheer lack of comfort you feel in your body at that moment — but you move forward, ready to face another day.

It’s breakfast time so you eat what’s given to you, or you try your best to get down at least half, wishing you could taste it. That’s followed by a handful of pills that you swallow, hoping they control the multitude of symptoms that often overwhelm you. If the pills encounter a “bad day” you’re now accustomed to going back to bed, donning your headphones and sleeping, blocking out the world 

Today, though, is a good day. You arise and, once more, attempt to solve what you consider a “wretched” therapeutic crossword puzzle, slightly convinced someone must be laughing at you somewhere, because you’ve never used or heard of these words before in your long life. “Who’s ever heard of…?” You solve the challenge by looking up the answers using your cellphone. 

You’re stunned that a half-hour on this crossword exercise can leave you so utterly exhausted. Then you watch a TV show that is now unfollowable, despite that you’ve seen it so often before. But you laugh about this, and make a joke that hiding Easter Eggs this year will be easy. 

Then, you flick to another channel and watch it through closing lids. Tiredness envelopes you, your brain is foggy and fluctuating blood pressure now rising, so you could rip off someone’s head if they looked at you sideways. Dozing on the couch will help you recoup your good humor. While nodding off, you wish you could contribute to the household — even simple tasks would be good — but that might have to wait till tomorrow, as today you are far too fatigued. 

Life has slowed down, narrowed into symptoms and medical appointments, blood tests and infusions, which are neither remembered nor enjoyed. You’ve learned that this condition is a marathon rather than a sprint, with each day representing a journey toward health. 

Some days with autoimmune encephalitis are dismal and you hold on to the knowledge that tomorrow is a new day and you’ll be one step closer to the goal of beating this. Communicating with family and friends helps you feel a part of the world once more. You learn to accept celebrating a good morning, afternoon or day, and finding pleasure in these snatched moments when stars align and the fog lifts. 

Kindness is what keeps you going. The kindness of others, especially caregivers who respect your need to take things slowly and calmly. Family, friends and random strangers, who share a moment or assist you, smiling in acknowledgement.  

Kindness to yourself, allowing time to rest when your brain is tired, taking a step back from the daily hurley burley and focusing on something that calms you and allows a peaceful space. 

And laughter. Laughing at the hundredth time your coffee has been taken by martians, or the stairs moved while you were trying to best to climb them. Giving yourself permission to find your trials just a little funny, while allowing humor and kindness to assist your repair. 

You know that AE has its own timetable, but your life is more than this condition. It is the joy you find throughout the day and the loved ones you allow to be part of your journey.

Bettina Goodwin Tony in France Sept 2019 1 500x281 - A Day of Living with Autoimmune Encephalitis

 

In light of National Family Caregivers Month (November), we’re spreading the word on the Rare Caregiver Respite Program offered by the National Organization for Rare Disorders (NORD). Read more here.

NORD 237x300 - A Day of Living with Autoimmune EncephalitisThis first-of-its-kind assistance program is designed for caregivers (parent, spouse, family member, or signicant other) of a child or adult diagnosed with a rare disorder. NORD understands that caring for a loved one is a generous gift that demands signicant amounts of time, attention, patience and dedication.

The Respite Program provides financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $500 annually for those who qualify. Awards may be spread throughout the year or in a single use.

Your generous Donations allow IAES to continue our important work and save lives! 

seal - A Day of Living with Autoimmune Encephalitis

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - A Day of Living with Autoimmune Encephalitis

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - A Day of Living with Autoimmune Encephalitis 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Reggie’s Story: A Yearlong Roller Coaster of his “Brain on Fire” Saga (Part 2)

Reggie’s Story: A Yearlong Roller Coaster of his “Brain on Fire” Saga (Part 2)

October 30, 2020 | By Dr. Robert Larry Reese-Johnson  

Read Part 1 here.

 Robert Larry Reese Johnson Reginald 1 500x333 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 2)Jan. 1, 2020 – It was a new year, and based on the progress that he’d made I emailed Dr. Tomatore regarding this progress and questioning, through my research, exactly what tests results were reviewed, what tests were done and how exactly the diagnosis of CJD was made? Dr. Tomatore never responded to this email, nor did he an acknowledge receiving it.

For the next two weeks, the medical team was re-evaluating Reggie’s care and treatment plan based on the progress he was making and with different symptoms. During this time new MRIs, blood tests, and EEG were ordered to determine what exactly was going on. 

I then got a call from the resident in charge of Reginald’s care for that time. Upon review of: the EEG, which showed NO EVIDENCE of the preliminary things they saw earlier; and the MRI, which showed evidence of clearing up the previous spots; and the blood tests, that were still to be determined, they were moving off the CJD diagnosis and agreeing with me that this this was AE. They were also moving forward finally with the next line of treatment, rituximab, and he was set to receive that treatment.

Rituximab had been denied by insurance from the first of December based on the CJD diagnosis, but now it was approved based on the correct diagnosis. There was also a family meeting around this time, at which they recommended sub-acute rehab for Reggie, asking me for facilities that I may suggest in the area for him to go, and the team moved forward with sending referrals. 

On Jan. 20, the blood test results came back and the CASPR2 antibody was identified as the cause of his AE. Reggie then went through a full-body CT scan as the creation of the antibody is known to fight off cancer. The results of the CT scan showed no traces of tumors or cancer anywhere, and the team would still try to move him to a sub-acute rehab. Two days later, the nurse case manager called to tell me that he had been accepted to a facility in Lanham, MD. There was concern on my part because I did some research and I was uncomfortable with reports on quality of care by that facility. Then there was a snafu with both time of discharge and dispense of medicine, which he never received. 

Upon arriving at the subpar sub-acute center, as Reggie was settling in I was talking to the nurse—there was only one of her for 13-plus patients—he fell twice against a cabinet with metal handles. Prior to his being admitted here, I had let them know he had to be restrained in both his bed and chair with a waist belt, as he attempts to get up and falls. They denied I said that, letting me know they would have never accepted him under those conditions.

Ultimately, I read the reports provided and they only stated that Reggie was agitated at times and would get up, which was a blatant untruth. As a result of two falls over 24 hours, they called 911 and he was transferred back to the PG ER.

Upon arrival at PG, Reggie was evaluated by the attending physician, who was familiar with him from his original admission. I informed this doctor of the AE diagnosis and what caused him to be brought back to the hospital. He let me know he would evaluate him and try to work with me regarding my requests moving forward. Reggie then checked out fine from the falls and that they had no medical reason to admit him. 

Knowing the situation however, the physician would try to complete a doctor-to-doctor transfer for him from PG to the attending doctor at Georgetown. While the doctor was doing this, two social workers told me Reggie had three options:

  1. He could be discharged to me and go home.
  2. I could transport him to Georgetown ER.
  3. He could be taken back to the sub-acute facility, as I hadn’t given them a chance.

I was opposed to all options and I was not signing for his discharge, so I got a CareFirst case manager to talk with the social workers. They came back to me with the case manager on the line and it was determined that Reggie would return to the sub-acute facility, be evaluated by their medical staff and nurses, so they could determine he’d be readmitted to PG’s rehab. I agreed and he was medically transported back to the facility that evening.

Upon Reggie’s arrival for the evaluation, I was taken into the conference room to meet with their team. They told me they could not do an evaluation, as promised, and could not recommend acute rehabs for a patient. Also, they informed me that they could not keep Reggie, as they could not ensure his safety, as by law they cannot do any form of restraint. They advised for me to take him back to Georgetown ER on my own and that I not him leave there.

I replied that I was unable to take a medically fragile, immunocompromised patient, on a cold night in my car. They then agreed to have Reggie transported back to Georgetown in a van, but without medical personnel, to the ER at Georgetown. I got on the phone again and informed the case worker all of this, and the violation of the agreement worked out. The van then arrived and did not have a wheelchair in which he could be transported. The staff said that if he used their wheelchair, I needed to bring it back the next day. I agreed and he was prepared for transport. Just as he was wheeled out, they told me that the van had left and they could not contact the driver to come back. 

I informed the staff that as a last resort I would take Reggie to Medstar Georgetown in my car as HE COULD NOT STAY HERE ONE MORE MOMENT because this facility WOULD NOT BE A PLACE I WOULD WANT ANY LOVED ONE! Also, I informed them that if Reggie, because of his compromised immune system, got as much as a sniffle and this caused his recovery to be extended, I would be suing the facility. He was placed in my car and I began the took him to  Georgetown. All this time, Reggie wasn’t provided with the crucial medication that was prescribed for his condition.

As I was transporting him to Georgetown ER, I called ahead to inform them of the situation. I also called the supervisor of case managers and the case worker so that everyone was fully aware. During three conversations with the supervisor, I was told the sub-acute rehab hadn’t known about Reggie’s needing restraints on his waist and an alarm on the bed, prior to or when making the referral. 

He was admitted to the ER, where he stayed in a room for two days, despite needing an individual room because of his agitation and need of a sitter. I was also informed at this time that referrals would be made to Encompass Health in Virginia or Capital Region Physical Therapy at PG for acute rehabs. The director for Encompass called and let me know they would turn him down, but would re-evaluate if Reggie required only an alarm on the bed as an alert. 

Jan. 24-Feb. 5 – Reggie received a room assignment in the post-surgical unit. I was impressed with the care as he was receiving PT and OT every day, and he was walking and progressing with less agitation. They were actually working with Reggie to devise a plan for him not to be restrained by the waist belt, and he was right outside the nurses’ station and they available to assist him immediately.

The social worker and the rehab physician for the unit, though, had no clue that Reggie was a returning patient to the hospital until I told them. The rehab doctor actually offended me by saying, “I would suggest or recommend a sub-acute rehab because that would get the most bang for your buck from insurance.” This was based on getting things out of insurance and not on the patient’s quality of life. The last time rehab was suggested and tried, Reggie went to acute rehab then to sub-acute rehab, both of which were cleared by insurance, and this would have been a total of 10-12 weeks or less, if they would have done it correctly?

Feb. 5 – Reggie moved back to the neurology unit and the care varied as they attempted to get him to be less agitated so he’d be accepted by acute care rehabs. There was no family meeting regarding this plan or any plans moving forward once Reggie was readmitted to Georgetown. When he was there previously, he received PT, OT and speech daily, and the nursing staff was walking him and getting him up to the bathroom daily, as he showed the interest. This no longer happened in the neurology unit. Most everything that Reggie did and attempted to do was prompted by me when I visited, or when I showed the nurses who agreed to do it and tried when I was not able to be there.

Feb. 15-22 – While visiting him in the evenings over two weekends I assisted him in eating of his meals. I then noticed he was not chewing as well as he had been previously. I inquired of the nurse and tech if this is what they had experienced during the previous meals, and they confirmed it.

I later noted that Reggie’s bottom row of dentures were not in his mouth because someone had removed them and placed them in a green cup. I alerted the nurse of this on Feb. 16, as my concern was that this could have caused choking or other problems with his lungs. Her response was that she did not know he had a bottom row of dentures, but said she’d write it in his record chart. Imagine my surprise when I came in the next weekend and discovered the same thing was happening and his bottom dentures were removed again; when I was assured that all would be informed? So, I took the action of writing on the chart, in his room to ensure dentures are in before eating, and that he has both top and bottom.

Feb. 27 – I was contacted at 2 pm by the attending physician that Reggie had experienced a fall while trying to get out of his chair. Because the footrest was in the up position, he got stuck and fell. Though the chair’s alarm sounded, the nursing and tech staff didn’t arrive in the room, and he fell on his knee and head. It was our experience that the nursing and tech staff were inconsistent in arriving in the room after Reggie or I hit the call button. All staff were aware that if Reggie tried to move or grabbed himself, he was letting them know he needed to use the bathroom and attempts should be made to get him up. The connections within his brain are being encouraged to promote independence. Right now, though, he needed assistance because I didn’t want the habit to form of just urinating or having a bowel movement on himself while trying to go as he normally would.

Mar. 2 – A meeting with the medical director and others of Georgetown was held regarding “next steps” and where they were planning to send him. The doctors gave me a great deal of information and I respectfully allowed them to speak. But they contradicted previous statements from other doctors. I stopped them from talking and said, “Reggie will not be going anywhere except Medstar National Rehabilitation Neurorehabilitation Acute Rehab or Encompass Health and Rehabilitation in Virginia!” If they proposed anything else, they would hear from a team of lawyers that I had contacted with all the prior information. Within the next hour they had a new PT physician evaluate Reggie and he was then set to move to Medstar NRH on Mar. 5.

Mar. 5-Apr. 1 – Reggie was admitted to Medstar NRH and made great progress there receiving an hour everyday of speech, OT and PT. I was there daily until I wasn’t allowed to because of COVID-19. Reggie finished his 30 days in acute rehab and was transitioned to sub-acute rehab at Largo Nursing and Rehabilitation Center. 

Apr. 1-28 – Reggie was admitted and continued sub-acute rehabilitation at Largo Rehabilitation and Nursing Center and even though this facility was just a 10-minute drive from our house I could not visit him, because of the Covid-19. I was able to talk on the phone or Skype with him daily. This absolutely killed me, as I knew what we had gone through in the past and I wanted to be with him to ensure the maximum was being done. As we were battling AE, limited knowledge of healthcare workers and therapists have of both it and COVID-19 caused concern.

Apr. 28-Jun. 28 – Reggie was discharged from the sub-acute rehab for home-based rehab through the Medstar VNA. He received 10 sessions of PT and OT and 14 sessions of Speech throughout this time, and he improved every day. 

Jul. 27 – Reggie was taken to Georgetown because he had a two-minute seizure at home. It was determined this “breakthrough” episode was caused by Reggie’s not following his medication protocol, i.e. not taking anti-seizure medications as prescribed. Even before his bout with AE, Reggie was non-compliant with medications and argumentative about taking anything, even vitamins. While in the hospital, he completed his second round of rituximab infusion.

Aug. 13- Oct. – Reggie is now an outpatient who receives OT and speech therapy at least twice weekly. He is making great strides and progress and I know will continue to recover with these therapies. I am impressed by these therapists, as they are trained in the field and have a neurological background. The OT and the speech therapists work together to help Reggie with his aphasia and apraxia toward reaching his stated goals. At the time of this writing, I am hopeful and joyful of what is going to be a better than before recovery!

Conclusion – This is the entire saga to this point with Reginald Johnson. As you can see, we have been through much that is both heart-wrenching and frustrating. At times, we not only have had to fight this disease, we have to fight the medical community so that they would not stop searching, treating, and taking proper care of him.

Reggie appears to get better every day. I have faith that full recovery is possible and will happen. I wrote this so all who choose to read it can be helped and assisted in any way. More importantly, understand to fight for your loved ones—especially when they cannot fight for themselves! 

Pride 2019 1 431x500 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 2)

 

 

Your generous Donations allow IAES to continue our important work and save lives! 

seal - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 2)

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 2)

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 2) 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

Reggie’s Story: A Yearlong Roller Coaster of his “Brain on Fire” Saga (Part 1)

Reggie’s Story: A Yearlong Roller Coaster of his “Brain on Fire” Saga (Part 1)

October 28, 2020 | By Dr. Robert Larry Reese-Johnson

Robert Larry Reese Johnson Reginald 3 227x500 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 1)Oct. 3 – This was the date in 2019 that this all began for my husband, Reginald Johnson-Reese, and me. I arrived home from work around 5 pm, and saw Reggie on the couch. We had a normal conversation as every evening. I then went upstairs to change and went to place my clothes in the washing machine.

The laundry room was in total disarray, as if someone had fallen within the room. I asked Reggie what happened and he couldn’t remember. He said he had passed out and fallen, but couldn’t recall when, nor for how long. He didn’t want to go to the hospital, had no injuries and seemed to be holding normal conversations. Knowing what I know now, this was what I believe to be his original seizure that sparked the entire saga that I am documenting here.

Oct. 5 – Reggie complained this entire day that someone was talking in the background of his phone conversations through the earpiece he was using. He went so far as to call his mobile carrier, asking whether it could possibly be an app running in the background or an issue with the phone. I now know this was another symptom of autoimmune encephalitis (AE).

Oct. 6 – Reggie and I were on our way to church. He was unusually quiet and not making comments about my driving. When I asked Reggie where we were going, he answered me in “gibberish.” I then asked him who I was, and he answered again in the same “gibberish.”

Immediately, I took him to the nearest hospital, where we walked in together to the Emergency Room (ER). He was admitted to the University of Maryland Capital Region Healthcare at Prince George’s Hospital Center (PG), for symptoms of what they diagnosed as a stroke, though he never had all the symptoms of stroke, nothing other than confusion and not speaking correctly. He was treated with tissue plasminogen activator (TPA) medications, to which he had an allergic reaction and then small seizures.

Oct. 7-16 – Reggie continued to receive inpatient treatment for what was believed to be a stroke. During this stay he needed a feeding tube to provide nutrition and calories for him. The initial tube did not remain in place and twice it had to be repositioned and reset. 

Oct. 16-Nov. 1 – Reggie was admitted to and received acute rehabilitation treatment from the physical therapy unit at PG, progressing from what they still believed to be a stroke. Later data provided to me on three different occasions while at Georgetown Hospital, indicated Reggie had no current nor previous evidence of a stroke, based on MRIs from that facility’s images. As a result, Reggie was misdiagnosed and treated for a medical condition that he did not have any evidence of having.

Nov. 1 – I received an afternoon call and request for a joint conference with the treatment team and social workers from PG. Reggie and I were advised that he had received clearance to be admitted to a sub-acute rehab center, Capital Region Future Care. While on the call, Reginald determined that he did not want to go there, against the team’s medical advice. He was allowed to make this decision, despite the fact that he was cognitively unable to process what was being said to him, per the facility’s speech and language pathologist, who had diagnosed him with Wernicke’s Aphasia which impacts his memory and cognitive processing abilities.

I had informed the attending doctor on Oct. 29 that the doctors, nurses and therapy staff would need to prepare Reggie for the next level of care, i.e. that he would not be coming home because he had another step in the process. They obviously did not have these conversations.

At 7 pm, under the direction of the social worker and supervisor, the hospital made the recommendation of discharging Reggie for home care, regardless of his readiness. They knew the Visiting Nurses Association (VNA) could not come to evaluate him at this late hour, and they informed me of that. I told them that I could not take off from my job to provide him with care on a full-time basis without VNA coming to the home daily.

Regardless, PG allowed Reggie, without the ability to read or understand what he was reading, to discharge himself. He was experiencing agitation and bits of rage at the time directed at me as I would attempt to assist him. The supervisor of social work said to me, “Mr. Johnson has to go because he cannot stay as the insurance company is not paying for a bed here past midnight…”

Nov. 2-4 – Reggie was at home with me, during which he was unable to read his medications, had two separate anger episodes in which he attacked and argued with me. I called the VNA to come for an initial evaluation on three different occasions on Saturday and Sunday, left messages and got no response to my phone calls. When Reggie threatened me on Monday morning, I called the attending doctor on his discharge papers and the VNA and was advised to contact 911.

The ambulance and police arrived and the EMT confirmed that Reggie could not determine the correct date and year, remember what the situation was, nor that he had previously attacked me. Reggie was given the option to allow me to drive him back to PG’s ER, which we did. He remained there, in a bed in the hallway for about 15 hours, before being transferred to his own room. He was disoriented, agitated, combative with me, and cognitively unable to process.

Nov. 4-8 – Reggie was readmitted to PG for review of medications and the symptoms he was experiencing. During this time no further MRIs were ordered, nor were any other tests done to determine whether he was experiencing the typical symptoms of a stroke, which could have determined something more significant was going on with him.

Nov. 8-10 – He was discharged that afternoon again to receive home care from the VNA. I called them twice that day, three times the next day, and twice again the following day. Again, no one responded to my call to come to do an evaluation or schedule an evaluation of him until the third day, while we were on our way to church. I let the caller know we would be back by 1 pm and they could come then. I was informed that this would not happen and that they were unsure if they could come on Monday.

While at church, Reggie experienced a seizure towards and was transported by ambulance to Medstar University of Georgetown Hospital (Georgetown) for assistance. There, he was treated with anti-seizure medications and had images taken through MRI and CT scans.

Nov. 11-13 – Because the doctors were concerned when Reggie’s level of

speech didn’t return to his baseline, he received care in the Neurology ICU unit, because the doctors were concerned that at this time Reginald did not return to the level of speech that was his baseline prior to the seizure. That was an indicator that he was suffering from something else other than a stroke. 

Nov. 15 – I was informed by Dr. Mayson, a neurologist and stroke specialist, that Reggie never had a stroke, because the MRIs from PG and the ones obtained from Georgetown showed no evidence of dead areas of the brain—the major sign of a stroke. This should have been discovered by the neurologists at PG and upon that information, if they did not know what Reggie was experiencing he should have been medically transported to a facility in the area prepared to treat other possibilities.

Georgetown immediately began to treat Reggie for AE, a diagnosis that from the onset of symptoms requires an aggressive treatment course, and we know now that is actually the disease that Reginald had for six weeks. His misdiagnosis and receiving treatment for the wrong ailment may have caused further relapses and a continuation of the disease to the progression that it has now. This has also had an impact on his time of recovery and long-term effects as his life proceeds.

As a result, I filed an online complaint with the Maryland Joint Commission on Health and the attorney general’s office for investigation of the above.

Nov, 14-15 – After review of both the PG and current MRIs, it was determined that there was no evidence of stroke activity within Reggie’s brain. This is when the neurologist believed that Reginald may be suffering from AE, and began treatments with five days of steroids and IVIG. They also performed a procedure in which a tube was inserted through which five infusions of plasmapheresis  could be administered. The attending neurologist conducted a lumbar puncture to obtain cerebral spinal fluid for testing, as all other tests were coming back negative for all other diseases or cancers.

Nov. 20- Dec. 1 – Reggie was to receive five plasmapheresis infusions over the course of 10 days. I was informed by the technician that was doing the treatments Nov. 20-21, but that he could not have three treatment days in a row. Therefore, he would have one on Nov. 23, then again on Nov. 25 and 27.

When I arrived at the facility on Nov. 25, I was told that he was completed his treatments. Naturally, I questioned what I was told and said he would need at least one more treatment, maybe two. The nurse responded, showing me on the computer that they had recorded the treatments. I questioned the dates because I had not seen them there that day. I was ignored and they attempted to reassure me that he was done with those treatments.

On Nov. 23, Reggie had surgery to insert a GI tube for feeding as he was not eating on his own. He was up from recovery by noon. I was with him from early that morning until the evening. When I was leaving, I told the nurses’ station that he was bleeding into the bag attached to his stomach tube and the tube attached to his nose; I was informed that this was normal clearing or the stomach contents. I questioned this as it was now just seven hours’ post op and this was not the case for the entirety of the day.

At 5 am the following morning, I got a call from the head of the surgery team that my permission was needed for emergency surgery to replace the tube and reset it as Reginald had internal bleeding overnight (which I was not informed about by the floor nurses that night) as the tube had come loose from the abdominal wall. I let them know I’d told the nurses as to my concern prior to leaving and was ignored or told not to worry.

After the second surgery was completed, the surgeon came to the room and explained the person performing the first surgery placed only two staples to secure the tube, thinking it would stay with that way, despite given Reggie’s level of agitation and movement during the surgery. Four staples were placed in during the second surgery as that is what that surgeon customarily does.

In advance, I had let the medical team know he is severely agitated with tubal restriction, and that this tube remaining in place was a problem at the first hospital, but I was ignored. The lead team surgeon stated to me that I should not worry and that what happened with Reggie would be a topic of their next team meeting. I was furious!

His final night, he was moved overnight to the ICU because his oxygen level dropped to a dangerous level. Once more, they neglected to tell me that this had happened. 

Dec. 3-5 – Reggie was moved twice more because he was no longer in need of IVIG treatment. At this time, the plan was discussed with me by his attending team was to obtain another lumbar puncture, conduct more MRIs, and proceed to Rituximab treatments, as Reggie was now 12-15 days from his last plasmapheresis treatment, and there had been little or no change.

Dec. 11 – I was called for a meeting with Dr. Tomatore, the medical team and a palliative care doctor. During this meeting, they told me Reggie’s diagnosis was Creutzfeldt-Jakob disease (CJD), fatal without cure and no treatment. It was explained that he would not get better, but would progressively get worse and most likely quickly decline to the point of dying. They added his overall life expectancy was a year or less, and that more than likely he would contract an infection, and this would take his life. We were advised to change his resuscitation orders from resuscitate to do not resuscitate as there was no hope of Reginald surviving this disease, so we complied.

This devastated my family and me, and I also told that because Reggie would need a nursing home and/or hospice care that I would need to work with the social workers to attain Medicare and/or Medicaid for the long-term care for Reggie. This was heart-wrenching because the date was right after our anniversary, Reggie’s birthday, Thanksgiving and within weeks of Christmas. 

Dec. 12-13 – After researching CJD, I sent an email to Dr. Tomatore in which I requested a second opinion, including the exact version of CJD that Reginald they’d diagnosed. My question was regarding the signs I was seeing that weren’t  

consistent with what I was reading from CJD. I also asked for an explanation of all the tests and images used to determine that this was CJD, as I understood that the most conclusive and newest tests used to determine CJD came back negative, but they were ruling that out because it had a 10 percent false-positive rate. Dr. Tomatore responded that they were excellent questions and requested my phone number to call me, which was within the email. I never received a call.

Dec. 16 – Reggie’s sisters and I met with Dr. Mayson and the team to review the the MRIs taken prior to the treatments, the tests and additional information related to care he received before being transported to Georgetown. Dr. Mayson explained that the MRIs conducted prior to treatments or the anti-seizure medications demonstrated the areas of the brain that were impacted were the outside portions of primarily the frontal temporal lobe.

He also said the CSF tests came back with three of the four tests positive for the protein for CJD, and these tests were 85 percent accurate. The team again stated that there was nothing more they could do except keeping Reggie comfortable, and that I should look into long-term or hospice care because CJD takes an aggressive downhill path to death. 

Dec. 11-27 – Reggie was still under the care of the neurology team and the palliative care doctor, and they were treating only his symptoms. They didn’t conduct tests for images, fluid or blood after the November treatments were completed. It felt the team was no longer concerned for him, and needed him out of the hospital to make space for someone that was not going to die.

A few days before Christmas, the medical and social work teams came into Reggie’s room to tell us he was denied both Medicare and Medicaid. What happened was they submitted incorrect income to receive the benefit: my income wasn’t as much as they indicated, nor was he receiving a pension. With the information at hand, they recommended discharging him for either hospice or home health care, to be paid for by me or us.

I was insulted and livid because the figures that I provided them with were misinterpreted by both them and the disability office. I reiterated the correct information for them to resubmit for review: Reggie doesn’t have a pension; we do not have assets; nor do I make a salary that is able to pay our monthly bills as well as pay for a hospice or long-term care. As a result, I refused signing on for discharged anywhere without a review of the corrected information.

Shortly after Christmas, Reggie began speaking his name, interacting with the medical team and nurses, and the palliative care doctor. He was showing signs of progress not in alignment with the CJD diagnosis! On Dec. 28, Dr. Mayson examined him, stating he was more interactive than he had ever seen him and added, “Well, Mr. Reese, medicine is not an exact science.”

Right before the new year, Reggie wasn’t in his room when I arrived around noon. I inquired at the nurses’ station as to where he was, hopeful he’d been taken for more tests based on the improvement. They scrambled to his room as they had just left it, and he was in the bed. They opened the bathroom door and we saw Reggie on the floor. He had gotten up from the bed on his own and fell, as he had either walked or crawled to the bathroom. He told me they said I was coming and he wanted to take a shower. After changing and cleaning Reggie, they had unfortunately failed to set the alarm on the bed, nor did they set the wait-belt restraint that he had to ensure he not get up by himself.

Read Part 2 here.

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Your generous Donations allow IAES to continue our important work and save lives! 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 1)

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 1) 

Be a part of the solution by supporting IAES with a donation today.

 

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Prithima’s Story

Prithima’s Story

September 30, 2020 | By Prithima Sunasee

A NOTE FROM PRITHIMA’S HUSBAND, REELY 

I connected with Tabitha at International Autoimmune Encephalitis Society through Facebook  thanks to my wife’s cousin soon after my wife was evacuated to the UK. As I was trying to understand the illness better and make sense of things, Tabitha was a vital sounding board for many of my concerns surrounding the research and treatments out there and what to expect. She was always a text and phone call away when I needed her, especially when I was trying to understand the side-effects of different medications. She guided me through every assessment and report I received regarding my wife. Knowing who to turn to for support during a crisis can help you feel less overwhelmed and more able to manage your feelings and reactions, with the knowledge and support from Tabitha, brought hope and peace of mind.

—-

So my journey starts when I returned to Dubai after celebrating my daughter’s 1st Birthday in the UK with my parents and my family in Hastings in July 2016.
Everything went beautifully and we had a great time.

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My dad was battling Myeloma, a form of cancer. He had being fighting this for a while but had managed to come to my wedding in Dubai, and come to the birth of my daughter in Dubai, and celebrate her 1st birthday in the UK. He was a very strong man and during his illness he also suffered from STEVEN JOHNSON syndrome, which was when certain medications don’t react well together and cause a burning effect on your whole body, and his whole body was covered in blisters, it was extremely painful but he was always so strong and never ever gave up. He was our hero, especially mine, I would tell my dad everything and anything and he would always advise and guide me.

Once back in Dubai, I continued with my work for a trip support company as an Account Manager. I had worked in Aviation for over 15 years and it was an industry I was always passionate about.

But in November 2016 I started feeling unwell and was getting a headache, and I knew instantly this was not a normal headache. I knew something wasn’t right, but for a few days I ignored it as maybe “taking on too much stress from work”.

My dad was a retired nursing assistant and we would always run to him for advice whenever we were not feeling well, and he would tell us what to do. As soon as I told him about this awful headache I was having, he told me to see the doctor. After visiting the doctors, they said to take some pain killers and come back if the headache did not go away.

Once again I waited a few days and the headache just got worse, this time my dad said to ask the doctor for a scan and which we did, the scan was scheduled for a weeks’ time.

But before I got to that week, one night I knew I was not well at all. But I fed my daughter before putting her to bed and made sure the house was nice and tidy (I was a bit of a clean freak as some would say). Then I went to bed…

And woke up in ICU having been in a COMA, I was told that when I went to bed at night, I woke up hysterical and was crying and didn’t want to go to hospital. My husband rang our friends who lived nearby, and they came and picked us up to take me to hospital. On the way I had a seizure and that was it, my condition deteriorated, I had multiple organ failure and was put on life support.

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The medical staff in Dubai were great and so were the doctors (I’m told) but no one knew what was going on with me as it was something they had never seen. Whilst in the ICU, I was being fed with a tube in my stomach and breathing through a machine. My husband spoke to my Neurologists, and in time managed to get hold of Dr Lunn from University College London Hospital. My husband and the doctors described my symptoms, and together Dr Lunn confirmed that I had Anti-NMDAR Encephalitis.

Dr Lunn then collaborated with the doctors in Dubai on treatments. But things got worse and my condition deteriorated again. They discovered I had a teratoma in my ovaries and that was the cause of the Encephalitis. There was no option, my ovaries had to be removed in order to save my life, and my husband had to make that final decision for the doctors. I was in a coma during this stage so still oblivious to what’s happening outside my very dark world.

Whilst I was hospitalised, my parents and all my family were constantly being updated on my condition as they were all worried. My dad and mum were especially worried as they were so far away.

My mum decided she would come, and my dad would come a couple of days later with his sisters (as he could not travel alone because he was quite poorly himself).

They, amongst other members of my family, came to see and support us and my parents.

My husband and Dr Lunn decided that the only place I could be treated was either the US or the UK, and as the UK was my home country, the decision was for me to get treated in the UK.

So my dad, mum and family had to go back to the UK. My dad had to get all the paperwork to arrange for my arrival and provide proof that I have lived and worked in the UK (in order for me to get treated here).

My husband really was a great strength and support, and has full faith in god and let god guide him in everything he did. He was currently working for a Medevac company based in Dubai. And for us his company were the best, they helped getting my repatriation arranged and made possible everything that seemed impossible.

 prithima 3 375x500 - Prithima's Story

Whilst I was being prepared for my repatriation, my husband had to sell up everything that we had in Dubai (our apartment, our cars, and all our household items). He managed to get a transfer with his work and get a job in the UK, although the job in the UK was 2 hours from Hastings and 1 hour from UCLH, the hospital I was being transferred to.

I finally arrived in the UK and was admitted at the University College Hospital, London. I was cared for by Dr Lunn and their great Neurology and Neurosurgery department.

Whilst at UCLH, Dr Lunn had a great team looking after me during my very long stay. For 10 months I was in a coma and had no clue what was happening on the outside world, I didn’t know who was coming to see me, what they were saying and what they were doing. I was just in a very dark place.

prithima 4 500x376 - Prithima's Story

Finally in late June/July (after my birthday I left the ICU) and was moved to the special ward, but my memory and recollection were still very bad. I have pictures and a diary of family and friends coming to visit me, and taking me out, and talking to me – but to date I have no memory of that, even though they say I was responsive, but as much as I rack my brain to remember, it is just a big blank space in my brain. It’s a big part of a puzzle that I can never seem to fit anywhere, and remains blank and missing.

Even though my dad was poorly himself, he still made the journey from Hastings to London to see me and talk to the doctors to understand what was going on. He got my mum into the pattern of coming to visit me whilst the doctors were doing their rounds, and would call her when she went by herself.prithima 5 500x376 - Prithima's Story

This is one of the last pictures I have of me and my dad together. Unfortunately, my dad’s health deteriorated whilst I was in hospital and he passed away August 2017, peacefully with my mum and family by his side.

The doctors told my husband and family not to tell me about my dad in case it affected my recovery, as I was still very fragile. I was unaware my dad had passed away, and would ask my mum why my dad had not come to visit me. I would ring her at home and ask where dad was, but I was always told he was tired and sleeping. Mum kept saying “dad loves you lots and is missing you and wants you to get better soon”.

So I worked with the nurses, the staff, the physios and my Occupational Therapist Jane Richmond, who made me build my strength and helped me walk, talk, and write again. I had to learn to stand and be independent and be strong, because I was so weak from being bed bound for so long. Once I started getting my memory back I felt that I need to be strong for my daughter and I need to be strong to show my dad what a brave girl I am. I knew he would be super proud and was doing everything so I could show him my achievements.

Soon with the help of the amazing doctors, Occupational Therapist, nurses and amazing team, I started improving and was allowed to go outside with the nurses and my family.

prithima 6 500x375 - Prithima's Story

I kept getting stronger and thinking about how I wanted to be back to normal and strong again for myself and everyone. Soon I was able to eat by myself.

Slowly I got better, and my medications were reduced but there was still a lot from what I can remember, maybe around 30 tablets a day. One of the many medications I was on was steroids. This made me put on a lot of weight, which I’m still struggling to lose; this weight gain affects your confidence big time in every way possible.

prithima 7 376x500 - Prithima's Story

My husband and my mum asked the doctors if I could come home to spend Christmas there, and they agreed. Before this they decided that they needed to tell me that my dad had passed away.

So my mum, my husband and other close members of my family came and took me aside, and slowly explained that dad had passed away. And I think I shed a tear but nothing really sunk in, and I didn’t really understand what they were saying. So I just agreed and said that I understood and carried on with the day.

After that I went home for Christmas, and my brother and his partner prepared Christmas dinner like my dad would have done but still nothing felt right. Everyone said I’m doing very well and I will get back to normal soon. But still nothing made sense, I was back to this puzzle in my head where there were missing pieces.

Another hurdle I had to tackle was my daughter, we were very close before I was ill but when I returned home, she was very distant and was scared of coming close to me. She would let me change her or be close to her and that absolutely broke me to pieces. I couldn’t believe it and felt like my daughter didn’t love me anymore.

prithima 8 376x500 - Prithima's Story

Whilst in hospital, my mum had been mainly looking after my daughter because my husband was working far away. My brother and his partner helped her a lot with my daughter, my brother’s partner took my little girl under her arms and treated her like her own girls, and I will never be thankful enough. My brother was a great support to me when I came out of hospital and whilst I was there for my daughter.

My mum had been shuffling between the hospital and the nursery to pick up and drop my daughter in between hospital runs, and everyone at the hospital couldn’t believe how she managed to do so much, and be so strong after what she had being through.

My mum and my brother explained to me that they had made a memorial bench for my dad at the hospice where he passed away, and took me there when I was home so I could understand what had happened and start accepting it.

prithima 9 376x500 - Prithima's Story

My brother also waited for me to return from hospital so we could put my dad’s ashes to rest. My dad always loved the sea, so we decided to release his ashes in the sea. But doing all this and knowing everything, I still couldn’t understand that my dad had passed away.

All I kept asking is “WHY, why did he go?” And “why didn’t he come and see me? Why he didn’t wait for me to get better?” And I still to date blame myself that I couldn’t get better fast enough for him to see me, I just needed a couple of days, all I wanted is his warming loving comforting smile, telling me it’s ok, everything’s alright. I want to tell him so much and see him so much, I get very emotional whenever I sit and think. He is the one person in my life that I would have definitely like to have by my side at this time.

But this is something I’m taking my time in accepting.

When I was told about my dad, this was also the time the doctors explained about my ovaries and that I would not be able to have any children because my ovaries had been removed.

I never expected this with the encephalitis, and was totally shocked and just looked at my husband and didn’t have anything to say. I was born in Mauritius and my grandma had 8 children. Me and my cousins all grew up together, my mum and dad love children, and I love children too.

I used to tell my mum, dad and my aunties that I will have 8 children too: 4 boys and 4 girls. That was my wish, I knew it would not really happen but that’s what I always said.

When I got married I was ready for children, I wanted to have lots to give to my parents because they were already great grandparents to my niece. And they always spoilt kids, and would adorn all children in the family with so much love.

So this were my many shocks, hitting me where it hurts.

I didn’t know how to accept this news and I still don’t. I feel that I’ve let myself down, I don’t feel like a woman anymore, as wrong as it sounds, that’s how I feel. And I look at my daughter and see how much she loves playing with her little cousins, and I feel that because of me she can’t have a little brother or sister.

Every time I look at families growing, and little babies popping up everywhere, it just pulls at my heart. I miss to be a mum again and grow a bump, have a baby grow inside you for 9 months, and once the baby is born, all the joy, tears and love and laughter that comes with it.

Right now I’m starting to accept those big factors that I have lost in my life. But thank fully I have an extremely strong, supporting and loving mum by my side, alongside my best friend, my husband, my soulmate. I have very close members of my family who may be far away but are so close to me and are always there when I need them.

Today I am a stronger person, I have learnt that life can be taken from you and that you should appreciate every moment you have. And I have chosen to do just that, focus on people who are important to me and focus on my future.

I am and will be on medication for a long time, but this is something I have to accept. The two things I have constantly going round in my head are memories of my dad and the sadness of not being a mother again.

But I promise myself that I will put all my love towards my daughter and overload her with so much love, not too much that she gets spoilt but enough for me to feel content.

I don’t know what the future holds but I can say I am a stronger and wiser person who won’t be easily taken advantage of, and will be more strongly independent than ever. 

I am thankful to all the family that were there to support my mum and my family during our difficult times, and we will never forget all that you did.

prithima 10 375x500 - Prithima's Story

Your generous Donations allow IAES to continue our important work and save lives! 

seal - Prithima's Story

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Prithima's Story

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Prithima's Story 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Life Lessons from Eating an Acquired Mussel

Life Lessons from Eating an Acquired Mussel

September 16, 2020 | By Dominic McDonald

At the mature age of 19, I decided I needed a sabbatical to escape the stress of my first year at University. It was to be a European adventure, sailing along the Mediterranean, exploring the coastline, meeting new people, understanding different cultures and eagerly tasting amazing food. I might even learn to sail, as I was to accompany a family from Sydney, tutor their children and help where I could on the boat, during a year of sailing. I never learnt how to sail, however I did ‘acquire’ some life lessons from a rather memorable Albanian mussel.

My story is rather unique in being young, sick and alone in a foreign country—presenting neurological symptoms with no diagnosis and a rapid exacerbation over a matter of days. On a journey of self-discovery, I lost myself and contact with my loved ones in just a 32-hour ferry ride from Venice to Greece. I was left with the belief that I would die in a strange and isolating hospital, which I later learned was Patras, located in rural Greece. The trauma of those first days and the subsequent four weeks in a hospital in Athens, were the start of my battle with autoimmune encephalitis. It’s a battle I continue eight years later, one that has significantly changed the course of my life. 

The treatment and diagnosis of such an unusual condition in Greece was quite an ordeal, where specialists assumed the worst, treating it as a likely ‘drug-induced’ psychosis, which significantly hindered both proper treatment and the ability to return home. It was by a miracle that a neurologist from North Shore, Dr. John Parratt, was able to make contact and provide a possible diagnosis over the phone, allowing medical evacuation to Sydney (the first and hopefully not the last time I fly business), where I was treated for autoimmune encephalitis at Royal North Shore. I later discovered I had been admitted in Patras, presenting in a highly distressed state, as the illness quickly took hold and I dramatically lost consciousness. Without Dr. Parratt’s intervention, I probably wouldn’t have survived. I am so incredibly grateful he got me home and continues to manage my fluctuating condition. I have learnt the critical need for understanding distressed patients with neurological symptoms and the importance of early diagnosis and treatment of neurological conditions.

My diagnosis with a rare form of autoimmune encephalitis in extreme circumstances and the prolonged nature of my acquired brain injury—that includes seven separate acute episodes of encephalitis since 2012—have taught me that being a medical anomaly can pose difficulties. More importantly, for better or worse a brain injury changes your conscious state, and therefore shifts your perspective and understanding of the world. I try to see it as life with a new lens. These are my three life lessons, ones that I now use as a framework for life with an acquired brain injury.

Discover your ‘anchor point’ and lock it in your mind.

relapse neurology wardSince my first acute episode in 2012, it has been so important to have a clearly defined timeline with an endpoint, during each relapse. An anchor point set to bring back the mind whenever it drifts too far. Settling an overstimulated mind is challenging, and settling an overstimulated mind with a severe neurological inflammation brought on by encephalitis can be nearly impossible. An anchor point establishes clear parameters for the brain and mind. It is a point of clarity and certainty when the world seems completely foreign and you are full of confusion, stress and unknowns. During each episode, my anchor point may shift, depending on context and circumstances, giving me a point of reference when I haven’t slept for weeks and have lost consciousness. It helps to focus, settle the brain and emphasise a more present mind. Importantly, I never drift all the way back to the hospital ward of Patras in 2012, but I remain present with a known anchor.

A clear event for me is April 2019, my most recent acute episode. Unfortunately, it was my fourth acute episode in less than two years, an incredibly traumatic period, easily the worst period of my life. A period I didn’t think I could survive (as I would drift away at times) I kept returning to my anchor point as the one certainty in my life at the time. It can be enough to settle the panic, give myself security and help motivate me. It has been over a year since my last acute episode, and if I were to get sick again I would fix again to my anchor point, just as I did after my last episode.

Smile.

It is difficult to know when you are through the worst of a brain injury, or experienced its lowest point. The prolonged severity of any brain injury confuses the journey of recovery. A smile is the best starting point, even when you feel you have nothing to smile about, because it has the power to generate positive energy and a presence of mind that seems too difficult. The transition from patient to survivor for any brain injury is arduous, unstable and incredibly isolating, but a smile can empower an individual through this transient period and help share the burden. A smile in the face adversity gives you a resilience to the fight, and presence of mind that can find enjoyment through the trauma. Not necessarily enjoying your life or life circumstances, but finding enjoyment in any small interaction.

Learn to Sail.

Dominic McDonaldI set out on a journey, with the goal ‘learn to sail,’ and be part of a crew in an Atlantic crossing. Instead, I have learnt to sail the fluctuations of a brain injury, crossing a new ocean with a new crew of specialists, family and friends. Along the way I have discovered new emotions, new moods, incredible highs built on the waves of hope and the unbearable lows in the face of another acute ‘storm.’

The extreme waves of emotions and fatigue add such volatility to everyday life, that even planning a routine is incredibly difficult. I have been propelled into an ocean of complete unknowns, with more volatile waters and severe weather, and after so many years of navigating these fluctuations, my journey became more and more isolating. I felt I was alone with no direction, and no way to navigate myself out of the storm. I find the enduring isolation years after the initial event to be the most traumatic impact of a brain injury, because eventually your support crew continues with their own lives and you are left alone, unequipped to navigate yourself. 

I had my first relapse in 2015, three years after my first episode, since then I have experienced more frequent and severe episodes, with four episodes between December 2017 and April 2019. Each acute episode can be weeks in hospital with complete loss of consciousness and memory gaps. My condition had become so unstable with no time for recovery between the waves of each episode, that I had completely forgotten how to sail the fluctuations of my condition. I felt hostage to my illness, its unknowns, uncertainties and instabilities and, after a number of horrific years I forgot my anchor point, I couldn’t smile and found it incredibly difficult to find purpose in my life outside of my illness. I had lost the ability to sail through the fluctuations, bunker down knowing conditions would settle, and there would be days ahead for easy sailing. 

Just when I had nearly lost hope, I had a new friend come aboard: Captain, a two-year-old black Labrador Retriever, who has had guide dog training and is a qualified therapy dog. Captain has been the friend and the help I didn’t know I needed! I was determined to find a way through this, but couldn’t continue alone. Captain has been an amazing crew mate, always eager for walks and swims, and through his eagerness, I am beginning to find more of a routine and purpose. He has been instrumental in changing the tides.

It hasn’t been all smooth sailing, I still get overwhelmed by everyday life, but together we have more good days than ever before. Our relationship gives a sense that finally momentum is shifting and we are doing all we can to capture this change and enjoy the periods of easy sailing. From my experience, brain injuries create an immense separation at a number of levels: all you can do is try your best to navigate each wave, each storm, enjoy the good days and remember one small change can break that separation.

There is still a gap between what I can do and what I want to do. Living my life with the knowledge of these three lessons makes everyday life more enjoyable and gives me hope that one day this gap will begin to fade.

In summary, it can be incredibly difficult to quantify the initial damage and consequences of any brain injury from minor to severe. To then quantify its impacts years after the initial episode are nearly impossible. All I know is, no matter the severity of the injury there is a monumental shift in the person’s life, such a dramatic shift that creates a seemingly insurmountable gap to life before and life after.

I now know more about my brain, its function and its limitations, I know this brain is capable, I just need more people to take the time to understand, And then remember I cannot be held to the standard of a healthy brain despite appearances. I hope that all survivors of acquired brain injuries have the opportunity to live the life they intended, not defined by compromise, and the capacity to support the reablement of those who are unable to do so.

 

Your generous Donations allow IAES to continue our important work and save lives! 

seal - Life Lessons from Eating an Acquired Mussel

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Life Lessons from Eating an Acquired Mussel

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Life Lessons from Eating an Acquired Mussel 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

From College Soccer Player to Survivor of Autoimmune Encephalitis

From College Soccer Player to Survivor of Autoimmune Encephalitis

September 2, 2020 | By Matt Martin

Article first appeared on the UC Health Media Room

Laura Martin is a 20-year-old college student from Winchester, Kentucky, right outside of Lexington. She was a Kentucky Governor’s Scholar and student at Transylvania University, as well as a standout goalie for the university’s women’s soccer program.

In August 2019, Laura’s future was on the rise. But in a matter of a few days, she and her family were soon facing their lowest moment. Her health suddenly declined. And no one knew if this promising student and gifted athlete would make it past 20 years old.

As she was getting ready for her sophomore year and second season with the women’s soccer team, Laura started behaving differently. Her friends began to notice she wasn’t herself. They told her family, who also noticed a drastic change in Laura’s behavior.

Laura wasn’t sleeping and started having intense paranoid delusions, acting in a way that was completely unrecognizable to her friends and family.

“I didn’t even know who this girl was,” Keri Martin, Laura’s mother, said.

Laura’s condition continued to decline. On Aug. 28, 2019, her family decided to take her to the Emergency Department at a Lexington hospital close to where they are from. When the family arrived, they were told that Laura was suffering from mental illness. Doctors took Laura into the behavioral health unit to be placed on a 72-hour hold.

With no family history of mental illness, Keri requested neurological testing for her daughter. But Laura’s doctors were dismissive of her request, and released her from the hospital after seven days without any solution to her symptoms.

“I thought this was how life was going to be for me now,” Laura said. “Coming back from the hospital was hard. Not being in school and missing my friends was difficult.”

Although Laura seemed better when she returned home, she immediately reverted back to behaviors that frightened her family. After having a poor experience at another healthcare system, Keri and James, Laura’s father, didn’t know what to do. They had many sleepless nights as they tried to take care of their daughter. With help from other family members, they watched Laura around the clock as she got worse day by day.

Laura wasn’t able to sleep and couldn’t walk, write or remember who her family members were. She was losing her cognitive ability at an alarming rate and she could no longer take care of herself for basic tasks.

“As a family, we were broken and at the bottom. There was nothing that could be worse than this,” Keri said.

Keri fought to get Laura in to see a neurologist in Lexington, only to be once again rejected by another physician. The family was told that Laura should be sent to a behavioral health unit. Keri felt that if they sent Laura back to a psychiatric facility, she would die there.

“We didn’t know what to do or where to go,” Keri said.

Running out of time and answers, Laura’s parents decided to bring her to Cincinnati to UC Health, home to the region’s No. 1 preferred provider for neuroscience care.

Immediately upon arrival at University of Cincinnati Medical Center on Oct. 9, 2019, the Martin family knew this experience would be different. Clinicians compassionately spoke to the family and quickly arranged for Laura to have a private room in the neurological unit.

Laura’s treatment when she arrived at UC Medical Center was led by Jordan Bonomo, MD, UC Health neurologist, associate professor in the Department of Emergency Medicine and director for Neurocritical Care Fellowship at the UC College of Medicine.

An experienced group of residents and nurses made Laura’s family feel at ease, leaving them with a glimmer of hope for the first time in months. One resident involved with Laura’s care even told her family that she would advocate for her.

Another resident, Laura DiDomenico, MD, remained in the unit with Laura even after her rotation ended so she could see her treatment through. Laura’s entire care team was united and committed to finding out what was wrong and how to save her life.

“It was an entirely different experience from the moment we walked through the doors of the Emergency Department,” Keri said.

Laura’s Recovery after having “Brain on Fire”

Laura had an EEG that revealed she was suffering from many small seizures, leading to her unusual behavior. The seizures were part of a neurological disease called Autoimmune Encephalitis, which refers to a group of conditions that occur when the body’s immune system mistakenly attacks healthy brain cells, leading to inflammation of the brain. This condition is often referred to as “brain on fire.”

Her family suspected this was the reason for Laura’s rapid health decline, but it wasn’t until they came to UC Health when this was confirmed. No other healthcare system in Lexington would even consider offering Laura neurological testing.

Over the next 12 days at UC Medical Center, Laura’s care team worked tirelessly to find a way to improve her condition. Joseph Broderick, MD, director of the UC Gardner Neuroscience Institute and professor in the Department of Neurology and Rehabilitation Medicine at the UC College of Medicine, took over Laura’s care on her third day in the hospital.

“Inflammatory disorders of the brain can be devastating and challenging to diagnose,” Dr. Broderick said. “But patients can also respond dramatically to the correct treatment.”

In order to improve her condition, Laura started Intravenous Immunoglobin (IVIG) treatment, which is used to treat various autoimmune diseases. The first couple days were difficult for Laura and her family, but as time wore on, her condition gradually improved.

By Oct. 21, 2019, Laura had completed her IVIG treatment and was well enough to return home. Laura’s treatment included IV steroids, and to this day, she continues using oral steroids. Both of these have contributed to her improved condition.

After discharge, she continued to improve further and subsequently went back to work while waiting to restart college. “Laura is a walking miracle,” Keri said.

“It’s gratifying to see such a positive response from Laura. We are very proud of our treatment team who made the diagnosis and started her on the appropriate therapy,” Dr. Broderick said.

Post-hospital treatment, Laura is seen by Aram Zabeti, MD, director of the Waddell Center for Multiple Sclerosis at the UC Gardner Neuroscience Institute and associate professor in the Department of Neurology and Rehabilitation Medicine at the UC College of Medicine.

“As the region’s academic healthcare system, we are proud of our ability to diagnose and treat rare diseases such as Autoimmune Encephalitis,” Dr. Zabeti said. “Early intervention in Laura’s devastating disease saved her education, productivity, family and even her life.”

Handling the COVID-19 Pandemic

When the COVID-19 global pandemic began, Laura’s family made sure to keep a close eye on her to protect her from possible infection due to her compromised immune system. Laura continued her post-hospital steroid therapy during the pandemic. Unfortunately, she wasn’t able to continue her part-time job she recently started, as the store she worked at temporarily closed to prevent the spread of COVID-19.

With the help of Dr. Zabeti, Laura successfully completed her steroid therapy and is no longer considered immunocompromised. She will be able to return to her part-time job when the store reopens.

Going from a healthy, successful college student-athlete to a neurological patient was something Laura could never have expected. She and her family went through adversity, frustration and fear along the way. But now, Laura is able to return to her life she had to give up prior to her diagnosis.

She’s able to sleep, walk, drive and work. Her next goal is to return to college in August 2020 and complete her bachelor’s degree in English with a minor in Secondary Education.

“It’s amazing to know that I have a condition that I can live with, that’s also treatable,” Laura said.

After being written off by other healthcare systems, Laura and her family found hope at UC Health. They know where to go in the future if anything happens.

“Everyone went out of their way to help Laura and all of us,” Keri said. “UC Health gave us our daughter back.”

 

Your generous Donations allow IAES to continue our important work and save lives! 

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 Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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 For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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I’m Looking Forward to Living the Rest of My Life after Autoimmune Encephalitis

I’m Looking Forward to Living the Rest of My Life after Autoimmune Encephalitis

June-10-2020 | Gary Walters

December 2019

Gary Walters 2 281x500 - I’m Looking Forward to Living the Rest of My Life after Autoimmune EncephalitisThe last two years of my life seem to have disappeared from my memory. Gone. Holidays, weddings, a funeral, birthday parties, Christmas and New Year. Friends and family keep telling me things I’ve done and the way I’ve behaved, some of which are very embarrassing to hear. It’s just not me.

This is the result of the disease Autoimmune Encephalitis (AE), the symptoms of which I was clearly exhibiting without my even realizing. Hallucinations, involuntary movements (which developed to 20-30 movements over four or five minutes), insomnia, loss of inhibition, memory loss and finally seizures, none of which I can remember. Apparently, I had two massive seizures at work (a Secondary School where I teach Physical Education), one of which resulted in the police being called due to my resisting all help. I’m told this was the last of a number of smaller seizures as the disease continued to develop and take hold.

The last seizure resulted in hospitalization for more than two months and being seen by a number of doctors and specialists who put me through a whole host of MRI scans, EEG’s, blood plasma analysis and other tests I don’t recall. I was eventually transferred to another hospital, where a specialist identified AE straight away, where I stayed and was treated for more than three weeks.

Lots of my friends and family traveled to see me, none of which I can remember and feel very guilty about admitting to. I do have a memory of very small flashes of shouting inappropriate comments at some female staff and having to apologize the next day and some very small flashes of walking around on other wards in my underwear looking for my ward. Again, it’s very embarrassing and most of it I can’t fully remember.

I’ve been told of other embarrassing events I performed, which eventually resulted in my being placed in a room by myself and given sedatives to help me “relax.” I was given all sorts of medicines, went through a whole host of tests and discussions with specialists on how to treat and control this very rare disease, and no one knew the right answer. It was a case of controlling the disease from worsening and monitoring my condition very closely.

 

Gary Walters 3 300x300 - I’m Looking Forward to Living the Rest of My Life after Autoimmune EncephalitisEventually, I was transferred back to my local hospital and continued to have a wide range of tests, blood samples were taken every morning to be analyzed and, after three more weeks, I was released to go home with a cannular inserted into a vein in my wrist with 24 tablets to be taken during the morning and 12 at night. I also received IVIG treatment to boost my immune system every morning at the local hospital.

I am now awaiting a decision from my consultant regarding the next steps. He has to speak with specialists in London as he is also unsure about what to do. I’ve been signed off work until after Christmas, which I also find frustrating as I feel back to 100%, but deep down I know that is the right decision.

 

I hope this article gives other sufferers of this very rare disease assurance there are other people out there experiencing similar symptoms of this confusing and inexplicable disease for which hopefully leads to further research and ultimately a successful pathway to complete recovery.

 

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May 2020

Since I wrote the above piece back in late December 2019, I’m feeling back to 100%. The doctors, specialists, occupational health therapists are all very surprised how quickly I seem to have fully recovered, and it’s all down to the support and treatment I’ve had.

It’s now early May, I’m still taking a large dose of meds including Lamotrigine, Levetiracetam, Prednisone, Adcal etc, which to be honest it’s now a case of a gulp of water and down the hatch. It’s now about 10 tablets in the morning and eight at night — massively down from 24 and 12.

 

I went back to work in early January on a carefully monitored and phased return, building back to full-time before the dreaded COVID-19 hit. I’m not going to lie, going back to work has been tough. The school I work at has moved on, which has is expected in the 12-18 months I’ve been in and out (mostly out). Different students. Different staff. Different expectations. It’s been hard for me, but harder and more frustrating for the brilliant people I’m lucky enough to work with.

When I got back into work I tried to pick up where I left off. It didn’t work, because my expectations of myself are so high. I wanted to know why, how, what had happened to this, that, and the other. I tried to rush back too quickly, and it didn’t work. I wasn’t listening or asking for help enough.

I thought I could pick up where I left off, but I couldn’t. My brain needed time to click back into action. Those billions of neurons needed time. Time, I thought I didn’t have. Fortunately, my employers have been incredibly understanding. They’ve supported me so much, something for which I am eternally grateful.

This is where I know I’m so lucky. I’ve read so many stories of people that are struck with different forms of encephalitis and other life-changing illnesses where they haven’t recovered enough to be able to return to work, or their employers haven’t been as understanding. At times, I feel guilty reading their stories.

As I write this I now only see my specialist twice a year and my meds are being reduced every 10 days. I’m back into full-time work in my original role and physically fit again, running at least three times a week, with lots of sport and the gym. I seem to have a “small” gap in my memory of about 12-18 months, but it could have been a lot worse.

So, it is very possible to make a completely successful and long-lasting recovery from AE and other forms of the disease. I read so many stories of people who have suffered from this terrible illness and are still suffering, so I wanted to write this to let people know there are success stories and you can — with the correct treatment and support network around you — return to full health and look forward to living the rest of your life.

 

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Become an Advocate by sharing your story. It may result in someone receiving an accurate diagnosis who is suffering right now and is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

 

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International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

 

Be a part of the solution by supporting IAES with a donation today.

 

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Serious Illness Changes Course of Lawyer’s Life, Career, and Practice

Serious Illness Changes Course of Lawyer’s Life, Career, and Practice

April 15-2020 | Jackie M. Stebbins

Jackie M. Stebbins 1 300x234 - Serious Illness Changes Course of Lawyer’s Life, Career, and PracticeLawyers have two great fears in life: 1) missing a deadline and 2) getting sick. Missing a deadline is scary and keeps us awake at night, but getting sick is about the worst. A simple cold or the stomach flu can require us to reschedule a deposition which could possibly change the course of the case and other deadlines, and it feels like all the dominos then start to fall. We’re humans, so we’re going to get sick, but we’re also lawyers, so we can plan for everything. Or wait, can we? I am a lawyer and I fell deathly ill while in private practice. It was unexpected, there was no accordingly tailored action plan, and it was worse than I ever could have imagined. In late May 2018, I was diagnosed with autoimmune encephalitis (AE) and it has forever altered the course of my life. My disease is a sneaky assailant. It took my body and it took my mind before I, or anyone around me, could get a serious hold on what was going on.

I suffered from insomnia for quite a while before I decided to take it seriously, but only because I was afraid it would start affecting my work. All signs pointed towards depression and anxiety. Lawyers become depressed from their workload and stress, that’s a fact. Who was I to believe I was any different, especially because of the hours I was working and the nature of the cases I was handling as a family law and criminal defense attorney. I didn’t want to admit to any mental health issues, but the slow and serious deterioration of my health finally made me admit and accept it. I was prescribed antidepressants to sleep and continued to plow through work. I told myself I’d take time off in the summer, I just had to make it through my busy spring. By the end of April, I was still an insomniac, my jaws were clenched, my hands were shaking, and my ears rang. In early May, I left work for a week’s break. Earlier that day, I had what I now know was a serious anxiety attack at my desk, and I knew I couldn’t stay at work any longer. I believed I needed time for my medication to kick in, which would hopefully allow me to sleep. On the surface, I told myself I would return to work very soon, but a deep down dark thought told me I’d never return to my office as I nearly collapsed out the door that day. Only six days after I left work, I checked myself into the psychiatric ward. My decline was obvious. I wasn’t very communicative, I stared a lot, I couldn’t sleep during the day or night, I no longer believed I was fit to drive with my children, and my body stopped working while I tried to swim or bike. I suffered from paranoia and confusion and hallucinated with prescribed sleeping medication. During my 48-hours in the ward, my mind started to slip and things, like knowing the date and reading a clock, became a challenge. I struggled to read and write. I cried and exhibited serious tremors. Something told me I didn’t belong in the ward, but I was desperate for help to sleep and to feel better.

From the time I left work until my time in the ward, my memory isn’t great. Once I left the ward, I nearly ceased to exist as a person and my memory is bare. My life during that time has been pieced together through records and my family’s recollections. For six days after I left the ward, my husband of 10 years took care of me like a child and wondered if I had dementia or was possessed, because of my cognitive impairment and strange behavior. At a follow-up behavioral appointment, my nurse practitioner immediately believed I had a neurological condition and expedited my referral to a local neurologist. Her astute thinking absolutely saved my life. However, the word “neurological” led my husband and family to think the worst. They believed I had a brain tumor. My neurologist’s diagnosis the next day was also life-saving for me. He believed I had AE but ordered more testing to rule out other conditions. Over the course of three days, I failed a neurological examination with flying colors, had an MRI image of my brain that was of poor quality because I shook so badly and could not lie still, and I underwent a spinal tap. I have only a few memories of the testing the first day and I don’t remember much after. My family cried for days and I was oblivious to everything. I repeatedly asked the same questions about what was going on but was fairly easily reassured and was compliant. My mother repeated over and over, “Thank God she doesn’t understand what’s going on.” Just 20 days prior, I had successfully defended an order to show cause hearing, but could not draw the face of a clock during my neurological exam. During the early morning hours, the day after the spinal tap, I had a grand mal seizure in bed that broke and dislocated my right shoulder. I was taken to CHI-St. Alexius Hospital in Bismarck, where I spent the next five days. My memories from the hospital are almost nonexistent and the ones I have are skewed. My health was incredibly fragile and there was serious discussion of having the Mayo Clinic’s airplane fly to Bismarck to retrieve me. While I was sick and rendered incompetent, my husband, family, and a few close lawyer friends took over my life and made all of the decisions for my cases, my role in my own law firm, my health care, and whether my husband had to sell our home and move us closer to our family. I had no idea any of this was going on. They all went into crisis mode to fight for my health and so that no one missed a step at the law firm. The thankfulness I have for my Superman husband, my beloved family, and my friends can never be fully explained. My health started to stabilize, so I stayed in the Bismarck hospital. Upon my release, I began a week of IV steroids to treat the AE. By the second day of treatment, my mind rallied, and my family saw the signs of me again. I underwent a CT scan that same week, which revealed blood clots in my right lung and leg, and three broken vertebrae in my back. It was also during that week that I was able to understand I was never mentally ill, but that all my health problems were the AE at work.

I went to the Mayo Clinic in June and my diagnosis and treatment were all verified, which was good news; it was the devil we were coming to understand. But the recovery process was slow from there. I struggled with people diverting my attention, noise, anxiety, fear, personal interactions, any public outings, could not drive, felt broken physically and mentally, was limited in movement, and was shaky and unsteady. I was mostly confined to my home for a year. I had to repair my mind, body, and spirit, and the Superwoman efforts required of me to survive and recover were overwhelming. With the love and support of my husband and family, and my determination to recover for the sake of my children, I rose to the challenge.

I never returned to my law firm after the onset of the AE, and I elected to retire from private practice based upon my health conditions. Starting in fifth grade, I only wanted to be a lawyer and have sacrificed more than I can explain to get to where I was in my career when the AE hit. Feeling like I lost the career I loved and the law firm I was so proud of, felt like the end of me and everything I knew. Although I have lost in unexplainable ways, I have gained an incredible new perspective on life. I have a lot of hope for the future. I also believe I can use the same drive and skills I honed to be a respected lawyer to accomplish the same goal I had as a lawyer: to help others. How I can best do that, only time will tell. I am currently working on a book to describe my experience with AE and I hope it is out for readers to enjoy in 2020.

As I’ve gone through this journey, I believe I’ve learned a few things along the way and hope to offer a little advice. 1) Take your work-life balance seriously. Upon deep soul searching, I know I was working too hard and not enjoying enough around me. I will live with that guilt and lots of “what-ifs” for life. 2) Make sure you surround yourself with colleagues and friends you admire and trust because your professional life requires it if you are ever unexpectedly debilitated. 3) Purchase long-term disability insurance. It is a great investment and was a life-saver for me. But most importantly, understand and read your policy before disaster strikes.

 

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Become an Advocate by sharing your story. It may result in someone receiving an accurate diagnosis who is suffering right now and is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE to ensure that best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

Be a part of the solution by supporting IAES.

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Living in the Moment

Living in the Moment

February-12-2020| by: Kerry Jones
Kerry Jones WED2020 2 - Living in the Moment
I am one of the lucky ones. But, in a way, I think I inadvertently helped make my own luck by contacting the Mayo Clinic when I did.
A little over two and a half years ago, my wife and I flew from our home outside of Kansas City, MO to the San Francisco Bay Area to visit family. When we returned and got off the plane in late May, my memory was almost completely gone except for a few instances from my childhood which, since I was 68 at the time, was a long, long time ago.

I started having seizures. At first, just a couple of times a day, gradually increasing to 20 or more a day. I had frequent feelings of nausea and incredible weakness (I couldn’t walk even an 8th of a block without being completely exhausted.) I contacted my physician and he tried to schedule me with the neurology department. They subsequently referred me to another neurological testing group, but scheduling with them was delayed while they were awaiting insurance approval. In retrospect, this may have been another stroke of luck, because, with my symptoms getting worse, I finally contacted the Mayo Clinic in Rochester on a Thursday or Friday in July. Apparently I used the right buzz words because they responded right away and said, “Can you come in on Monday?” Even though they were an out of network provider on my insurance plan, my wife and I jumped in the car and drove up there.

After being run through a battery of tests and being seen by several doctors, I was diagnosed with LGI1 Autoimmune Encephalitis, and placed under the care of Dr. Eoan Flanagan who began treating me with high dosage prednisone – this was about the first of August. I had my last known seizure in late October, though most of the other symptoms have persisted. At this point, I’m certainly not cured, but am adjusting to a new reality.

My memory is still very spotty. For example, as I am writing this, we are once again in California visiting family. While talking to my daughter, who just recently moved back here from Kansas City, I mentioned that I hadn’t been back to California since this had happened and that I was leery about flying even though I knew intellectually that flying had nothing to do with causing the disease.
Kerry Jones WED2020 1 500x375 - Living in the Moment
My wife gently reminded me that yes, we had flown out here just last year. I have no memory of that. I lived in this area a large portion of my life, but as we drive around, it’s like I’m in a foreign country. I don’t recognize much of anything I see. The funny thing about my memory loss, though, is that I remember people, just not places or events. I’m currently in the process of being weaned off the prednisone and replacing it with Rituxan (I had my first Rituxan treatment last August.)

I have no idea what the future will hold, whether I’ll get my memory back or not. But I’ve determined to not let that impede my enjoyment of life while it happens. It’s hard sometimes when I’m with friends or family when the conversation turns to reminiscing about a past which I can’t remember, but I know there’s nothing I can do about that. My new motto is “Live in the Moment.”

Your generous Donations allow IAES to continue our important work and save lives!
Learn more about how you can raise awareness of Autoimmune encephalitis

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

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AE Awareness Month 2020

AE Awareness Month 2020

International Autoimmune Encephalitis Society founded AE Awareness Month in 2020 to shine a light on Autoimmune Encephalitis. AE Awareness Month is the biggest month of the year for the AE community.  It is a time when the entire community comes together to raise awareness of this treatable group of diseases.

Our main goal is to raise awareness among the public and medical community, especially first responders such as Psychiatrists and Emergency Room Clinicians, about AE and its impact on patient’s lives and the lives of the family members, loved ones and caregivers who support them.

Anyone can get involved in this International effort. Get involved today to shine a light of autoimmune encephalitis.

1.

Autoimmune Encephalitis Trivia Playing Cards

AE Trivia Playing Cards

IAES in collaboration with Dr. Josep Dalmau has created the first product in the world specifically addressing the needs of the AE Warrior™ and those impacted by AE.  ALL proceeds will support Dr. Dalmau’s research group. Stay tuned for the announcement of this exciting educational and rehabilitation tool.  It is destined to become the most vital product anyone touched by autoimmune encephalitis should purchase.  A true game changer in helping you to become a strong advocate, receive an outstanding educational foundation about AE doubles as a rehabilitation tool!

 

 

Trivia card ad 1 FB - AE Awareness Month 2020

2.

Become an IAES Angel and receive a facebook picture frame announcing that you have

The IAES Angel has lifted IAES upward by ensuring that comfort, guidance and improved health is brought into an AE patient’s life. IAES Angels are motivated by their Spirit of giving. They are Champions in raising AE awareness.

 

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you this badge and profile frame to place on your Facebook page or Website.  As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

 

 

 

 

 

become - AE Awareness Month 2020

3.

AE Warrior and AE Caregiver Royal Registry Certificates

Bestow these certificates on your AE Warrior™ or Loved ones

The Royal IAES Registry designates The AE Warrior™ and AE Sentinel with Royal Title. In recognition of their heroism under fire. The Royal IAES Registry is the highest honor to be bestowed upon those engaged in the mighty autoimmune encephalitis battle. Without warning and within an instant, these unprepared citizens were thrust unto a perilous fire raging battlefield. To fight demanded that they dig deep into the depths of their soul for the inner-strength they had to summon to save their life or the life of the one they loved. This act is so rare IAES sanctifies and affirms by sealed decry the bestowing of Royal Title into the IAES Registry.

 

 

 

 

AE Warrior 2020 Certificate watermark - AE Awareness Month 2020

4.

Watch and Share our Awareness video AE Warriors Stepping Forward

AE Warriors Stepping Forward

This inspiring video shows the wide age range and diversity of AE patients, it explains what AE is in simple terms and provides key RED FLAG warnings to any medical professional who views it. This is IAES’ 4th annual awareness video. Proceeding videos have had a powerful impact on raising AE awareness and has lead to many patients receiving an accurate diagnosis.

 

5.

Get your Story in your Local Newspaper or Television Station

Breaking News!

IAES has done the work for you. Download our press release and directions. Reports will use quotes from experts cited in the press release as well as contacting the doctor who diagnosed you. This raises awareness on a much larger scale and only involves a few simple steps.

 

 

 

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6.

Hold a FUNdraiser or Awareness Event at Work, School or Your Home

FUNdraiser - AE Awareness Month 2020

By going to our FUNdraiser Page, you will see several ideas for all ages that allows you to have FUN and raise awareness for AE at the same time.

7.

Assemble AE Survival Kits


Share your love and encouragement by purchasing a survival kit, (Goodies not included). IAES has created 11 different variations of these kits that are bound to bring smiles of pleasure to those who receive them. Create a kit for your AEWarrior™, AE Mom, Doctor, Psychiatrist, Nurse, Infusion day, Child or Caregiver. These kits are available year-round.

 

 

 

 

Survival Kit AE infusion - AE Awareness Month 2020

8.

Raise Awareness with IAES Candy Bar Wrappers

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IAES has created 14 unique candy bar wrappers you can raise some sweet awareness.  These free wrappers include sentiments for people in the AE community and public.  These wrappers can be given as your simple act of kindness or used as a fundraising vehicle. They are a wonderful way for children and siblings to get involved in fundraising and raising awareness as well.  Candy wrappers will be available throughout the year.

9.

Print and share this AE Infographic

infogram - AE Awareness Month 2020

Post this Infographic throughout the month on your social media platforms and also download it onto card stock paper and give it out at school, work, gym or your place of worship.

 

10.

The IAES Virtual Art Show

ae - AE Awareness Month 2020

Tour the IAES Virtual Art Show and share the link on your social media platforms. Showcased is art in a variety of forms done by patients, siblings and caregivers of all ages. Experience a special insight into AE through their eyes and experiences.

 

KETO Diet: What is it? Who is it for? And why?

KETO Diet: What is it? Who is it for? And why?

Keto Diet Blog FB post - KETO Diet: What is it? Who is it for? And why?January-28-2020 | Daria Muir, M.D.

It is important that we all stay well informed. When a person receives a diagnosis of autoimmune encephalitis, they want to do whatever they can to improve their health. Some will reach for what appears to them to be a positive action and decide to change their diet. This can have very negative unintended consequences. To ensure your safety, and in IAES’ commitment to providing accurate information to assist you in being well informed on your road to recovery, today I’m going to give you a simple explanation about the Keto Diet.

What is it?

 

KETO is a diet that excludes carbohydrates completely. Basically, you eat just proteins and fats. Carbohydrates are the main fuel generator for the body (and especially the brain). They transform into glucose (the fuel). By switching to the KETO diet, one leaves the body without the fuel source. So, the body learns to turn other stuff into fuel. In this case, mainly fat. But also, the muscles. That’s what we call “putting the body into a state ok Ketosis). Is this good? Is it bad? For some people it is good. For some it is bad. For some it is an unnecessary risk, meaning there is no proof whatsoever that it helps, but there is proof that it can do some damage.

Who is a candidate for the Keto Diet?

 

Keto diet is recommended in a small number of diseases:

– severe Epilepsy, irresponsive to golden standard medication (being more efficient in children);

– Glucose Transporter Type 1 Deficiency Syndrome (a genetical disease that does not allow the body to produce GluT1 , so the brain does not get glucose- fuel. The ONLY treatment in this situation is keto diet!);

– it is also used by some nutritionists with patients that need to lose weight.

!!!! It needs to be assessed, recommended and monitored by a doctor!!!

 

There is no proof that the KETO Diet works in Autoimmune Encephalitis. (It can be recommended in severe Epilepsy post-Acquired Brain Injury in AE, but it does not treat AE, it treats the Epilepsy resulted from a brain injury from AE. As you know by now, Epilepsy and Seizures are not the same things. In AE we may have seizures, due to brain swelling and antibodies attacking our healthy brain cell. This is why we need immunosuppressant/ immunomodulatory treatment to control the disease.

Epilepsy is a disease resulted from the brain being injured and scarred.

Epilepsy can happen in AE but having seizures does not mean you have Epilepsy! Your doctor needs to asses that and tell you that you acquired Epilepsy!

Why? And why not the KETO Diet?

 

Now that you understand who an appropriate candidate for the Keto Diet would be, let’s discuss what can happen if you try the diet on your own without discussing it with your doctor.

Why does the Keto Diet need to be recommended by your doctor and monitored all the time?

 

Because it can be dangerous! Yes, it can be.

For diabetics. Also, people with kidney disease or who take medication that increases the risk of Kidney disease. For example, It can lead to major weight loss, below the normal BMI, that can endanger hormonal balance. It can increase pressure on the liver and kidney and eventually eats up your muscles too. The body can enter into ketosis (dangerous for some people).

KETO Diet is not easy, not harmless, not for anybody and not proven effective in AE.

 

Your doctor needs to assess and recommend that for you or for your child because it can be dangerous and can cause harm. If you have the conditions stated at point 2, then you might benefit from a very well supervised KETO Diet. Always ask your doctor! And please, don’t recommend it to other people, because it can harm them! Our concern is your safety and sharing accurate information for your best overall health.

References:

Ketogenic Diet and Epilepsy: What We Know So Far

Ketogenic Diet in Patients with GLUT1 Deficiency Syndrome 

Ketogenic Diet 

 

Your generous Donations allow IAES to continue our important work and save lives!

 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

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When Your Brain is on Fire

When Your Brain is on Fire

brain on fire

January-22-2020 | Carolyn Keating, PennNeuroKnow

Imagine you’re a bright twenty-something with a new job and a new relationship.  Everything seems to be going your way until you start becoming paranoid and acting erratically.  Then come the hallucinations and seizures.  You’re admitted to a hospital where you’re (incorrectly) diagnosed with a psychiatric disorder.  You swing from violence into a state of immobility and stupor.  And perhaps even scarier?  You don’t remember any of it.  Sound like a nightmare?  Well, it actually happened to Susannah Calahan, who details her terrifying story first-hand in her 2012 book Brain on Fire: My Month of Madness.

What caused these frightening symptoms?  The answer was a disease that had only been discovered a few years earlier (right here at Penn!): NMDAR encephalitis.  There are four main phases of the disorder.  In the prodromal phase, many but not all patients experience a flu-like illness for up to 3 weeks.  The psychotic phase is accompanied by delusions, auditory and visual hallucinations, depression, paranoia, agitation, and insomnia.  At this stage, most patients are taken to the hospital, where around 40% are misdiagnosed as having a psychiatric disorder like schizophrenia.  As this phase progresses, seizures are very common (although they can occur at any time throughout the illness), as well as involuntary muscle movements like lip-smacking or grimacing, catatonia (muscular rigidity and mental stupor), impaired attention, and memory loss.  The next phase is unresponsiveness, which includes symptoms like the inability to speak, loss of voluntary movement, and sometimes abnormal muscle contractions that cause involuntary writhing movements.  The last phase is the hyperkinetic phase and is characterized by instability of involuntary bodily functions such as breathing, blood pressure, heartbeat, and temperature.  Many patients who breathe too slowly often need to be placed on a ventilator at this stage. The decline to ventilator support can progress very rapidly after several weeks in the psychotic stage, and ultimately patients can be hospitalized for several months with the disease1–3.

What does NMDAR encephalitis actually mean?  This disease is an autoimmune disorder, meaning the body’s immune system mistakenly attacks its own healthy cells.  Normally the body identifies foreign substances by making something called an antibody that recognizes a unique part of the invader, thus targeting it for attack and destruction.  In NMDA encephalitis though, the immune system attacks the brain (that’s where to term encephalitis comes from), specifically a type of neurotransmitter receptor called an NMDA receptor (NMDAR).  These receptors bind the neurotransmitter glutamate, and play an important role in learning, memory, cognition, and behavior.  In fact, the symptoms of NMDAR encephalitis resemble those caused by drugs such as ketamine or PCP that prevent the activation of NMDARs.  For instance, at low doses ketamine and PCP cause paranoia, false perceptions, and impaired attention (like the early stages of NMDAR encephalitis), and at higher doses these drugs cause psychosis, agitation, memory and motor disturbances, and eventually unresponsiveness, catatonia, and coma2.  Several mechanisms have been proposed to explain the symptoms caused by antibodies targeting the NMDAR, but most of the evidence seems to support the idea that the receptors get removed from the cell surface and internalized.  For instance, experiments in the laboratory demonstrate that when animal neurons grown in a dish are exposed to patients’ anti-NMDAR antibodies, the number of NMDARs on the cell surface decreases as the amount of antibodies increase.  When the antibodies are removed, the number of NMDAR receptors on the cell surface returns to baseline within 4 days1.

It’s easy to remove antibodies in a dish, but how do doctors get the body to stop producing antibodies against itself?  Step one is identifying what triggers antibody production in the first case.  Interestingly, NMDAR encephalitis predominantly affects women, and ovarian teratomas (a type of tumor made up of multiple types of tissues, which can include nervous system tissue) are responsible for 50% of cases in young women2.  In patients who have some sort of tumor, removal improves symptoms in 75% of cases.  Interestingly, herpes simplex virus can also cause encephalitis (inflammation of the brain), and about 20% of these patients also develop antibodies against NMDAR2.  Treatment consists of immunotherapy: corticosteroids, IV infusion of immunoglobulins, and/or plasma exchange1, however patients with a viral trigger tend to be less responsive to treatment than those with a teratoma trigger or the 50% of patients with an unknown trigger2.  Once treatments begin improvements in symptoms start within a few weeks, though return to baseline functioning can take up to three years.  Rehabilitation is required for many patients after they leave the hospital.  Deficits in attention, memory, and executive function may linger for years, but luckily over 75% of patients with the disease recover to at or near baseline neurological functioning1.

Doctors and scientists hope to develop new treatments involving immunotherapy combined with small molecules that are able to access the brain to directly combat the effects of anti-NMDAR antibodies, ideally leading to faster control of symptoms and shorter recovery time2.  A brand new animal model of the disease was just described last week that will hopefully lead to more discoveries about how the disease is triggered and potential new therapies4.  And with increased awareness of autoimmune disorders against the brain, doctors will be able to more quickly correctly diagnose patients with this illness and get them the treatment they need.

References:

  1. Venkatesan, A. & Adatia, K. Anti-NMDA-Receptor Encephalitis: From Bench to Clinic. ACS Chem. Neurosci. 8, 2586–2595 (2017).
  2. Dalmau, J. NMDA receptor encephalitis and other antibody-mediated disorders of the synapse: The 2016 Cotzias Lecture. Neurology 87, 2471–2482 (2016).
  3. Dalmau, J. et al. Anti-NMDA-receptor encephalitis: case series and analysis of the effects of antibodies. Lancet Neurol. 7, 1091–1098 (2008).
  4. Jones, B. E. et al. Anti-NMDA receptor encephalitis in mice induced by active immunization with conformationally-stabilized holoreceptors. bioRxiv 467902 (2018). doi:10.1101/467902

IAES PNK Partnership logo 300x251 - When Your Brain is on Fire

Your generous Donations allow IAES to continue our important work and save lives!

 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

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Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children’s Hospital

Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children’s Hospital

TCH AE Day 11 242x500 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's HospitalAugust-7-2019 | Sheila Sims

Hello all!

My daughter and I attended the July 27th ‘Day of Strength’ event at Texas Children’s Hospital.  I wanted to share our experience as I hope others will get the opportunity to attend events like this one in the future as well. We were informed about this convention by my daughter’s Neuroimmunologist (Dr. Rohini) as we had been in her office for my daughter’s first visit with her. She informed us that there would be information from experts attending and speaking on Autoimmune Encephalitis. I was intrigued so I immediately went online and booked our tickets.

A little back story about our personal experience with Anti-Nmda Receptor Encephalitis. It all began on February 7, 2019. My daughter had been feeling “not herself” for a couple of weeks. She informed me she could not think straight, she was confused, eye sight was not right (seeing double) and she was exhausted. I made her an appointment with her primary and she was diagnosed with a UTI.

I figured OK, maybe this is a bad one and after a round of antibiotics, she will feel much better. That was not the case. After a couple of trips to the ER after her appointment, things just started to get worse. I made her a second appointment with her primary, as I knew something was not right. The day of her second appointment is when we would witness the scariest times of our lives. As she was getting ready for her appointment, she started making no sense with her words and had no clue about what we were doing.  She didn’t even know where she was.  Then out of nowhere, she collapsed and started seizing.

This was all so completely out of the ordinary for her as she had been healthy her entire life. She was rushed to the hospital by ambulance as she seized again en-route by ambulance to the hospital. When we arrived, they immediately took her for scans and performed a lumbar puncture. They knew after the lumbar puncture, that she was in fact ill, just had no diagnosis just yet. It would be three weeks in the hospital before the diagnosis of Anti-NMDA autoimmune encephalitis was confirmed. She experienced psychosis, hallucinations, clonus, tonic clonic seizures, periods of comatose, and several other symptoms.

After two months hospitalization, needless to say, this is when I decided I will not stop until we have answers. I would not stop looking for information that could be beneficial to my daughter and I knew there were people out there going through this as well. Thankfully, my sister (Dianna Sims) was helping try to find information when she stumbled upon International Autoimmune Encephalitis Society. I will just say, it was God sent! OK, OK, enough about us and back to the day of strength.

TCH AE Day 2 500x243 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's HospitalWe went to this convention, it was our first time attending something like this. My main goal when going was to get better informed by experts and individuals that have walked this walk. We got there a tad early and I do not regret it. When we got there, we sat at a table alone feeling a little awkward and maybe a little out of place. Things soon lightened up as we started to meet more people. The first two people we met where a mother and her 18-year-old daughter from New York. They were just plain out beautiful people. The daughter, we discovered was also fighting anti-NMDAr AE.  My daughter instantly felt that she was not alone in this fight and that there were, in fact, people that could relate to her. That was a hug to my heart. The people we met and all those who attended, caregivers, parents and patients were all struggling in the same way. All of us were fighting for the same cause, walking the same journey and we felt for the first time that we not alone. This was the first time I experienced that we do not have to fight alone. Being in the company of others who we could talk with who related and understood our situation because it was a shared experience.

TCH AE Day 8 145x300 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's Hospital

Nesrin Shaheen

When the convention started, Dr. Muscal spoke first. He spoke about the history of encephalitis and all the new findings, treatments that are available and the hope of a cure one day. He was intriguing and brilliant. He had information that I was glad to receive as I had not seen some of it before. The next presenter was Nesrin Shaheen. She spoke of her daughters’ journey and how they fought for many years before a correct diagnosis was made. She also spoke of some ancient history around encephalitis and had some awesome slides of possible encephalitis in that ERA. If a mother ever wins “Mother of the Year Award”, she would be that mother! She fought, she involved herself and, in the end, her daughter is succeeding well! She is my new role model (next to God, of course! Lol)

TCH AE Day 7 145x300 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's Hospital

Dr. Saxena

Next, Dr. Saxena (Psychiatrist) spoke. She discussed the psychiatric symptoms of Encephalitis. She went over a list of medications to help as well. Not many Psychiatrists are well informed about symptoms and correct psychiatric supportive medications for autoimmune encephalitis but she was! She made perfect sense. The last session we were able to stay for was the “self-care” session. In this session, patients as well as care givers were given a breathing exercise to practice. They also went over a check list that was provided to everyone in the room of different activities that they may be willing to do as to take a minute or two of the day to self-care. Though the patient is the focus, caregivers must also maintain a level of self-care. I think that this was very important as many of us have lost ourselves as caregivers and have forgotten ourselves and what some of our basic needs may be.  This was a real eye opener.

I have to say, I was a little skeptical and nervous going into this whole convention thing but, it really opened my eyes to all the treatments, the people going through the same thing and the possibilities that patients actually have! This is something I absolutely do not regret and look forward to attending many more as we are able.

Your generous Donations allow IAES to continue our important work and saves lives!

Why the zebra 2 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's Hospital

When the judge has read the book…

When the judge has read the book…

May 22, 2019 | Julie Ann Fetch

ss 300x199 - When the judge has read the book...

Finally, some good news to share with everyone.

I just got a favorable ruling from Social Security Disability that I meet their criteria due to my having anti-NMDAr Encephalitis and other autoimmune conditions.I initially applied in 2015 and after a long battle with appeals and 2 hearings, I won!

Here are my take home messages:

1.     Apply for yourself, have someone do it for you, or apply for your loved one as soon as there is a diagnosis.

2.     Report all medical conditions, not just autoimmune encephalitis. Surprisingly, my case was approved more for my Crohn’s Disease and other autoimmune conditions than the anti-NMDAr, but all of these conditions were complicating each other.

3.     Don’t give up if you are at first denied. Appeal. Hire an attorney that only takes a small percentage and only if you win. I think mine only made $6000 from my case.

4.     Make sure your doctors write in the record the things you tell them about. Like fatigue, confusion, anxiety, depression, slurred speech, vision issues, etc. and give them exact examples of how it affects your everyday life. Better yet, write your list of symptoms out and ask/make them file it in your medical record. Or, track a “typical day” for a week or longer and show it your doctors. 

5.     Have others who live with you or observe you, tell the doctors what they see with their own eyes or ask them to write it down so the doctor can put it in your record.

6.     The biggest thing I learned in this process, is that they don’t award disability based on just a diagnosis. It has to be in your medical record how it is affecting you day to day to the point that you “couldn’t sort pencils” as my attorney always said. As we all know, before encephalitis is properly diagnosed and appropriately treated, “sorting pencils” is probably not even possible. (It still may not even be possible during recovery either for that matter!)

Keep up the good fight.

Oh, and my judge read the book “Brain in Fire”, so awareness is spreading everywhere!

j 223x300 - When the judge has read the book...


 International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.


You generous Donations allow IAES to continue our important work and saves lives!

Now I am a Strong Woman

Now I am a Strong Woman

March 13, 2019 | Hannah Leasure

Hannah Leasure’s Mother attempts to give her medication

On Christmas Eve 2013, I was admitted to hospital, where I stayed until April 2014. I had the RARE autoimmune disease called anti-NMDA receptor encephalitis. It took the doctors months to figure out what I had. I almost lost my life, BUT I lived through it. It was the hardest thing I have ever experienced. Surviving was the EASY part.

The hard part? Having to go day by day for months, just lying there pretty much dead. My pulse was 60/30. My body wouldn’t move but my brain was 100% irritated. Blood transfusions, donor blood plasma, feeding tubes, wires, spinal taps, being in the ICU, I can go on and on.

After coming back to it, I had to re-learn who my family was… including my parents. I had to re-learn how to say basic words like “hello”. I had to learn how to walk again. I couldn’t use my legs, I couldn’t use my arms. I was catatonic. It was like I was dead but there was still a pulse. I had to re-learn how to chew and swallow. I was stuck with a feeding tube for the longest.

Seeing my scar every day reminds me of how badass I am, and I will never forget that. I couldn’t do anything for myself.  While having to get through this, I was getting through it with my heart shattered because the one who I wanted there the most was never there. I cried every day. “I just want to go home!” “Why can’t I be normal?”

Not only am I a survivor but I am a fighter. I fought every day to be who I was before all of this… that normal 17-year-old senior high school girl, like the rest of my friends.

So, every day, I got up out of that hospital bed, wiped my tears away and said to myself “girl you got this”. I finished all of my therapy because I knew fighting was the only way to get this done.

After going through all of this, I got out out of hospital to realize that a huge rumor spread all around town saying that I got my disease from smoking K2 spice. Obviously THIS. IS. A. LIE. My medical records state that, and I still have them.

So, with all of this being said, I went through a lot from having to dealing with this, losing friends, having to start my life over but I would not trade any of it for the world because this made me who I am today. I was a teenage girl who went through an awful depression, who was paralyzed. Now I am a strong woman. I am walking, I can run, I can bend, I can eat, I have a great job, I have a wonderful boyfriend, I have my family and great friends.

We all have trials in life, it’s up to us how we control it.

 I can do all things in Christ who strengthens me. Praise God.  “Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.” 

72f61a 8beffa9113a64c94bb36a6f0c6a33a71 mv2 - Now I am a Strong Woman

 Hannah’s book, Glowing After the Darkness, was published in 2016 and is available on Amazon. 

Support our mission by becoming a card carrying member of International Autoimmune Encephalitis Society. For as little as $35 a year, you can become a ‘Sustaining’ member.  Your membership includes a small gift of an awareness wrist band as a special thank you from IAES along with your beautifully designed membership card.

72f61a 7b868bc54e914e28a369a47264807ba4 mv2 1 - Now I am a Strong Woman

International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

antiNMDAr

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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