rehabilitation Archives

Rehabilitation Strategies

by Alanna | Dec 7, 2021 | Hot Topics

December 8, 2021 | By Mari Wagner Davis, RN ACM

The staff at IAES is proud to present an informational blog written by our wonderful Support Services Coordinator, Mari Wagner Davis. Mari is instrumental in helping AE Warriors, their families and caregivers receive the information and services necessary to optimize their diagnosis, care, and recovery. She is a mighty warrior herself and developed strategies that have not only greatly helped her but have also aided hundreds of others on their AE path forward. We hope you find the information and story to follow, helpful!

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My name is Mari Davis, and I am the Support Services Coordinator with the International Autoimmune Encephalitis Society. I was diagnosed with limbic encephalitis almost 5 years ago after having seizures at work. After being diagnosed with AE, I received plasmapheresis, IVIG and steroids. Due to ongoing seizure issues, I remain on seizure medications, and I continue to have memory issues.

After my initial diagnosis and treatment, I had a brief inpatient rehabilitation stay and then was able to move back to our home and transition to a day rehabilitation program. I was, also, able to complete a cognitive rehabilitation computer program. As time went on, it became apparent to me that there was little known about what rehabilitation services may be best for AE patients like me and those with other forms of AE. We all differ greatly in our AE recovery and rehabilitation but many of us have similar issues. I began to question and investigate what services could help to provide the best possible outcomes and help those with AE reach their maximum potential over time. For example, I have noticed that I have improved greatly in some areas and not so much in other areas. I have memory issues and have issues with divided attention. I find it difficult to multi-task. Although inpatient and outpatient rehabilitation services ended, I have continued to work on making progress in the areas that I struggle with. With my background and work as a nurse case manager coupled with my own diagnosis of AE, I have been on a quest to find ways to better outcomes not only for myself but all those with AE. Although inpatient and outpatient rehab is wonderful, for me, it has not been AE specific enough.

Many of the areas that I have made the greatest amount of progress on are by developing methods and strategies that I have come up with myself and with the help of others and may be beneficial for those with AE. Realizing and accepting that I have a memory issue has made me become more organized. I have had to develop adaptive strategies for myself. Many of these ideas were not taught during rehab. In the following paragraphs, I will outline strategies that have greatly helped me.

When I plan meals and go food shopping, I save and write my grocery list and organize it by meal versus simply making a list of random items needed at home. Before I started doing this, I would forget what I had planned on making and because of this I became confused and frustrated. When I plan to make a meal, I will leave something out on the counter to remind myself of what I planned to make. It is a visual reminder of the meal I plan for that day. Another visual reminder strategy I use is to leave the light on that goes to the laundry area in our home. This visual cue helps me to remember that ‘light on’ means laundry being done. I then remember to go and check on the laundry’s progress. Another visual reminder cue I find useful is to leave my medication bottles on the counter and use a pill organizer. This makes it easier and ensures that I take my medications and keep track of when a med refill is needed. I feel what is out of sight is out of mind. Visual cues have been a very big help for me in overcoming memory issues.

Another way this strategy has been useful is to keep a calendar on my refrigerator. I note events on the calendar and keep this same event calendar on my cell phone. I then utilize the various alarm features and different sounds on my phone for specific events. Having the calendar on the fridge is a visual reminder for me but also lets my husband know what I have planned for certain days. One small thing I do is to call him when I leave the house and call him when I arrive where I am going. This gives him a sense of comfort knowing that I remembered the planned event, have arrived on time, and once home, have gotten there safely. I, also, use phone alarms for my medications. I find this especially useful in the evenings when I may have other activities going on or am tired. My phone can be useful for directions, typing notes regarding things that I want to accomplish both routine and nonroutine. List making has become paramount for me. For many without AE remembering what needs to be done daily, weekly, and monthly may be easy. For me making a list either on paper or on my phone and then checking off the items once they are done has been a great strategy. For many of us it can be easy to become frustrated or depressed when we acknowledge or need to deal with memory issues. It can be exhausting. Making lists and checking items off not only assures that things get done but it also gives us a sense of accomplishment and we can then see progress being made. For me, I feel more positive and successful in my rehabilitation.

When I was discharged from rehab to home, I had no schedule. I slept quite a bit, which is necessary for our recuperation and recovery. And many of us still need to sleep, nap and rest more than we previously did. But I was left with no structure or schedule. I had previously been very busy with work, family, and friends. I felt at a loss. I no longer had the daily structure I had loved and thrived on before. Trying to develop a new routine can be helpful. It provides structure and can help an individual by giving purpose. For those wanting to and able to return to work this provides a good transition strategy between recovery and returning to work. Simply giving yourself a daily timetable of things to get accomplished can be a mental boost. Of course, at times we need to recognize and pay attention to our brains and bodies and know the daily routines may need to change due to treatments, etc.

Another issue I have realized is that after acquired brain injury, rest is important. It is as important as working on the issues or deficits that remain difficult for us. Most of us need additional rest. At the end of a day, I will find that if I lay down on the couch watching TV, I will fall asleep. If I get up early, I may need a nap during the day. I may need breaks if I am working on something that is cognitively challenging. Giving myself the time to rest, will allow me to be more successful in the things that I am working on.

Exercise can also help in recovery. But it needs to be added to one’s schedule carefully and as tolerated. Exercise can be scheduled into the day at a time that will work with other planned activities. It may take time to come up with a daily routine and individuals with acquired brain injury may need help in initially making a schedule. But developing daily routines for those of us with AE can help our recovery both mentally and physically.

Many of us diagnosed with AE are not able to drive a car or any vehicle for many reasons but the main one being we have had seizures. In many countries we must prove we are seizure free for a certain period of time before our driver’s license can be reinstated or we may need to take a special type of drivers test or class to be able to drive. In my case, I took a special driver’s test with the DMV (Department of Motor Vehicles). The instructor was trained to work with individuals with disabilities and taught me a lot about safe driving. Although I did not pass the driving test the first time, I did the second time, by utilizing what he taught me. I am probably a safer driver now than I was before AE. One of the things the instructor taught me included waiting a bit once the light turns green in case someone is running the red light. This simple act would allow me to avoid getting hit by a car going through the light. I now leave more space between my car and the car in front of me. If there is a reason the car in front of me stops or is stuck in traffic, leaving additional space allows me a way to move into the next lane. I am cautious about my speed and leave additional time to get to where I am going. Prior to AE I used landmarks such as buildings to help when going someplace. Due to my memory issues and the fact that places change, landmarks are moved, etc., I now utilize my phone’s navigation apps versus trying to remember directions. And I check directions prior to leaving home so I am more confident in how to get to a location. Being able to drive once again and utilizing different direction strategies has allowed me some independence and given me confidence in what I can accomplish.

Having a new disability can be difficult to accept. I am not the same person I was before AE. I have seen a psychologist since I was discharged home. I have struggled with grieving the loss of the old me and accepting who I am today. With time and work I can say I have made progress; I now have much more appreciation for other people, I am not in such a hurry that I do not see what may be going on with others around me. I realize that some of my relationships where those of convenience, and I know how much it can mean to people to take a small amount of time to acknowledge them and spend some time with them. I can say that working with a professional around the issues of grief and adaptation can be helpful. I will say recovery after autoimmune encephalitis is a marathon not a sprint. Additional research about the stages of recovery after a diagnosis of autoimmune encephalitis is needed to help provide the services that can help both the individual and the family.

Utilizing some of the strategies I came up with has helped ensure progress in my recovery. It has helped boost my moral. Developing visual cues, trying to schedule my day, exercising when I can, getting adequate rest, learning new driving strategies, and seeing a psychologist have been extremely useful in allowing me to become the new me!

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AE Warrior Dominic Interviews Dr. Rob Perna

by Alanna | Feb 22, 2021 | AE Warrior Personal Stories

February 23, 2021 | By Dominic McDonald

Message from the IAES blog staff: As the 4th and final of the IAES blog series for AE Awareness Month 2021, we are honored to present and hope you enjoy the compelling story of the AE journey, thus far, of one of our AE Warrior members, Dominic McDonald and his guide dog Captain! This includes an interview Dominic had with one of his doctors regarding his thoughts about AE and rehabilitation.

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Hi, my name is Dominic McDonald and a Sydney, Australia based Autoimmune Encephalitis Warrior. I was first diagnosed with AE in 2012. Prior to my first acute episode I lived a very full life studying economics and I was a competitive rower. Nearly nine years later, I have discovered just how difficult life as an AE Warrior can be.

I have had six acute relapses. Four of the relapses occurred between 2017-2018. I have endured the fluctuations of this horrible illness and the evolving nature of rehabilitation. I have learned to adjust and live with different expectations and contentment. Recovering from a chronic autoimmune illness that is still not yet very well understood requires more than just individual willpower (although it certainly helps) but the AE Warrior has a much greater success rate when the outpatient rehabilitation care can be well defined.

The past two years of my rehab have been the most successful of my journey. I feel as though this is because I have been able to thrive under a well-structured and defined rehab program. As part of my recovery and rehab I now have a trained guide/service dog named Captain. Captain is a 3-year-old black lab that is a trained guide dog and now my therapy dog. Captain accompanies me everywhere including all of my doctor and infusion appointments. He has made an incredibly positive difference in my life and recovery.

I was introduced to Dr. Robert Perna by some very helpful people within IAES. Dr. Perna is both a neuropsychologist and nurse. He graciously agreed to be interviewed by me and answer several questions regarding both AE and rehab. It is my sincerest hope that you enjoy the interview that follows.

Early Stage Diagnostics and the Relationship to Outcome:

1) Your research has identified four distinct stages of autoimmune encephalitis; how do you expect this evidence to impact clinicians and the accuracy of their decision making? Will this improve the speed of proper diagnosis for AE patients?

Dr. Perna: AE can be divided into phases and the symptoms in each phase may vary significantly. Phase one, often does not cause a constellation of clearly diagnostic symptoms and it may be difficult for a definitive diagnosis at that time. Ideally, a definitive diagnosis is made early in the next phases.

2) Case studies have also illustrated permanent modification to synapses (working memory, cognition, dual tasking etc). What improvements can a patient expect recovering from an acute phase encephalitis? Will these outcomes vary for known and unknown antibodies?

Dr. Perna: Synapses are malleable and plastic, but some people have long lasting symptoms tied to AE/LE related to brain inflammation and resultant atrophy. This is a disorder which has highly variable outcomes, so its hard and potentially highly inaccurate to make generalizations about recovery during the acute phase. That said, most people exhibit less emotionality, better self control, and more ability to complete self-care as they recover from the acute stage. This clearly doesn’t mean people are nearly back to their baseline though they are much more manageable.

3) Importantly, the evidence of these studies has demonstrated the critical need for early detection and proper diagnosis, for long term patient outlook. Do you see this as the significant discrepancy in the divergence of recovery and rehabilitation of autoimmune encephalitis patients, particularly for patients with lingering synaptic modifications and hippocampus impairments?

Dr. Perna: I’m not sure I fully understand the question, but earlier diagnosis usually means earlier and appropriate focused treatment and that usually is associated with more positive outcomes. One plausible reason for this is that the brain inflammation will be reduced sooner, and this will decrease the likelihood that the inflammation will lead to atrophy. The cases I have worked with, in general, have shown a clear pattern of early diagnosis being associated with more positive outcomes. Interestingly, even when diagnosed early, the course of recovery is often not linear and simple.

4) The results from your research have shown a mean age of 23, however there is quite a dispersion in the age of cases outside this median. How does detection protocol change between age groups to ensure proper hospitalization at the critical A/B stage ? Do you expect significantly varied rates of recovery between age groups?

Dr. Perna: Age is a potentially important variable when considering recovery from all types of brain injury. We have something called cerebral/cognitive reserve and this is the brains ability to resume functioning or recovery following neuronal loss or injury. More reserve is strongly associated with more recovery, though is just one of many important variables. In terms of age, young adults have the most reserve and this declines over time. Prior brain health and how well someone functioned before the AE/LE is also associated with reserve, so it’s not just age. Anyway, early diagnosis, appropriate treatment, and ongoing rehabilitation until someone is very functional again is the gold standard.

5) Typical detection of autoimmune encephalitis is done through the CSF fluid with up to 80% patients presenting abnormal levels of an antibody, often when MRI and EEG can be inconclusive. If this is the critical diagnostic marker, what is the correlation between a positive prognosis and a seropositive test result?

Dr. Perna: If CSF testing is done early, is positive for specific antibodies, and the treatment is early and focused then that should be associated with a positive prognosis. However, its not often that simple. The treatment regimes are complicated by medications with various side effects. People often need multiple rounds of treatment.

6) Furthermore, “Rapid diagnosis and Prompt treatment” are considered essential for long term outlook. How does a patient with a known antibody (NMDA for instance) and a tumor compare with a patient with an unknown anti body and without a tumor in long term recovery? If both patients are detected at the early stage in the disease phase would you expect similar outcomes?

Dr. Perna: Great question. I think its not likely they would both be diagnosed as early, but the person with the known tumor (which would be resected) would most likely recover better because of the specific known cause (the tumor) of autoantibodies and perhaps less of a need for immune response. The whole issue of a lesser known or unknown antibody raises the risk of diagnostic and treatment delays, trial and error treatment strategies, and a much less clear expected course of recovery.

Recovery and Relapse:

1) As discussed, there is an increasing number of AE cases, a growing number of antibodies types, and seronegative antibodies. Considering these growing health trends, what is your view on the likelihood and frequency of an AE relapse? Dependent upon antibody (both seropositive and seronegative), timing of diagnosis, promptness of treatment, and ongoing preventive treatment?

Dr. Perna: I believe the research suggests that there is a 10 to 25% relapse rate during the first two years. Relapse may occur from months to years post initial episode for cases of anti-LGI1 or anti-NMDAR encephalitis. Relapses often occur when immunotherapy is reduced or discontinued so the person should be closely monitored at those times.

2) The Hippocampus is often referenced as having lingering impairments, what improvements will a patient see after a strategic rehabilitation plan? Will these outcomes vary for known and unknown antibodies?

Dr. Perna: The hippocampi are often areas of acute brain inflammation in AE/LE. For some people to get reasonably quick treatment they may not develop atrophy/damage to these structures, but other people may develop damage here and this will likely measurably affect their short-term memory. The hippocampi are structures in the brain that have significant neurogenesis, but recovery from an injury to these areas is difficult. Those individuals who have been found to have specific antibodies often do better, but to be honest the empirical research on outcomes is very limited. Even when talking about outcomes, not all outcomes have been well researched for these individuals.

3) Describe your ideal professional expectations, of what patients require to become independent? 85% of patients continue to experience cognitive and behavioral abnormalities at discharge, what is your recommended outpatient support and care?

Dr. Perna: I think every patient with this disorder has a unique recovery course that is much less predictable than other causes of brain injury. As a result, I think care for people with LE/AE needs to be very individualized. Many people are not fully functional after acute care and appear to need some post-acute rehabilitation. This care can be very beneficial but is often prematurely discontinued for a variety of reasons. This fact causes me a lot of concern about the long-term recovery of people with this disorder. Some people clearly need several months or post-acute rehabilitation.

4) A two-year recovery period is often referenced as a guideline for recovering patients, however, it can be very difficult to know the long-term outlook for an autoimmune encephalitis warrior and gauge their ability to return to normal activities. For example: work, study, social, sport. For a patient in the midst of the 2-year recovery, what do you consider to be most productive and beneficial for rehabilitation? How do you suggest patients who have reached the two-year guideline begin to commence a return to normal life activities and still be mindful of their underlying condition?

Dr. Perna: This is a great question. There is good empirical evidence of what can be done to help our brain functioning though many people with AE/LE and many other people are also not doing what’s needed to maximize brain functioning. There is great evidence that physical and cognitive exercise produces measurable benefits to brain health and functioning in a dose-response manner (in general, the more the better). Stress management is also good for brain health and eating a healthy diet has many health benefits as well. So, these should all be part of the persons daily/weekly like, but additionally, they will likely need focused treatment program based on what their specific symptoms are. There are specific rehabilitation exercises for specific impairments. For example, if someone has short—term memory loss, there are internal and external memory strategies that can be practiced and utilized to help the person maximize their recovery. When people leave rehabilitation, they frequently still have symptoms, but often don’t have a good understanding of the exercises they can independently do to further their recovery.

5) What therapies should a patient be targeting in outpatient recovery? Evidence suggests improved results in multi-therapy rehabilitation. Should this be included in all outpatient plans? Typical side effects of AE may include weight gain, working memory difficulties, cognitive deficits etc. How does a patient best strategize a rehab plan, under an individualized symptomatic approach?

Dr. Perna: Multidisciplinary or interdisciplinary treatment involves each therapist working or communicating together to help the patient recovery. That’s the ideal when someone needs multiple disciplines to provide their treatment. Not all outpatient care is that well coordinated. What’s likely most important in outpatient care is that the therapists are working on the goals that are most important to the patient. Also, its important that there be good communication between therapist and patient and whoever the patient lives with or is involved in their care outside of treatment. The most important outcomes concern how well someone is functioning in their home or community, which is not the same as how well they are doing in the treatment facility.

6) AE patients in the last 10 years have benefited significantly, from the growth and acceptance of immunotherapies, importantly rituximab and IVIG. From your research and professional experience, where is the main growth area to further developments in AE therapies?

Dr. Perna: I’m a clinical neuropsychologist and nurse, not a neurologist so I think I will defer on this question to people who have more expertise in this area.

7) At present treatment protocols (rituximab and IVIG) may not be a cure for some, but an effective management tool to stabilize their condition and minimize any exacerbation of symptoms. What do you recommend as effective ways to support these treatments? – specifically patients looking for daily activities to better manage the fluctuations of their condition.

Examples:

Regular exercise (healthy weight)
Set sleep and rests
Set Routine
Cognitive challenges
Diet
Meditation/relaxation therapies

Dr. Perna: I will provide a brief response to this question though I believe the aforementioned issues are very important in promoting brain, immune, and overall health. Considerable empirical research suggests that exercise benefits many aspects of our health including the brain and that about four or more hours of exercise per week can often produce measureable benefits to brain functioning and mood management. Adequate sleep and an adequate and balanced diet have also been shown to be very important though these are things that often are not well managed. Having relaxation time or medication can also bestow various health benefits, but unfortunately people don’t always allow themselves time for these activities. Many people mistakenly assume sleep and these other activities are the same and they are not. Your list also includes having routines and structure. These can be very helpful and not only allow people to more efficiently use their time and feels a greater sense of control, but make life feel less chaotic and less stressful. The list also mentions diet and a diet high in certain things may increase risks, for example heavy alcohol or caffeine may since the risk of seizures and a diet heavy is salt and sugar may have a negative effect on the immune system. So, my short answer is that someone trying to recover from AE should take control of all these to optimize their health and give them the best chance to overcome AE.

8) Are you aware of common triggers that may have a negative effect on rehab within AE patients? Should patients actively avoid any activities that can trigger symptoms? Or should they be creating adaptive strategies to manage these potential triggers? – examples: noise, light, screen time, driving, physically exhausting activities etc.

Dr. Perna: This is a complex question in that there are some common triggers for seizures in people with an altered seizure threshold (like many people with AE/LE) and there are some common factors that are associated with relapses and there are factors that negatively affect the bodies immune system and obviously that may affect AE. As for the seizures, some significant triggers are lack of sleep, fatigue, significant stress, alcohol use, heavy caffeine use, and flashing lights. Potential triggers for AE relapses are reducing or discontinuing medications for it.

9) Autoimmune Encephalitis remains a relatively unknown illness amongst the general population, even throughout the medical community. Despite the relative unknowns, do you see rehabilitative connections between AE and other brain injuries as these patients may often encounter similar problems?

Dr. Perna: This is a good question in that AE/LE often causes a brain injury that is (after the acute stage) treatable by many of the same strategies/interventions. However, the onset, initial presentation, waxing and waning of symptoms, exacerbations, and range of psychiatric symptoms make this a much more complex disorder to treat than many of the more common types of brain injury.

10) What therapies used in other neurological conditions and brain injury patients do you consider relevant for autoimmune encephalitis rehabilitation?

Dr. Perna: Once someone has recovered from the acute phase of this disorder, many of the evidence-based rehabilitation strategies used to treat other kinds of brain injury can be very effective. Multidisciplinary rehabilitation involving many hours of cognitive rehabilitation may be necessary. A home safety evaluation, therapeutic driving evaluation, ongoing psychology and psychiatry consultationsand ongoing follow up with the person writing prescriptions

Caregiver Education and Ongoing Support:

1) What would you consider necessary support to family and carers of AE?

Dr. Perna: This is a very important question that I think more people should talk about. What’s tricky about this is that early on many caregivers don’t really understand what they may be in for. I always try to educate the caregivers as much as possible about AE and also about caregiver burden and self-care. I think caregivers often need ongoing support and assistance and I often try to respectfully suggest this.

2) Is there a need for further education, resources and support for families and caregivers?

Dr. Perna: This is a disorder that requires that family receive a significant amount of education. Early appropriate education will allow the person and their caregiver family know what to expect and how to plan.

3) Ideally what would you like to see as the rehabilitative and therapeutic medical standards and expectations for patients when recovering from encephalitis?

Dr. Perna: I think the rehabilitation for these individuals should be more comprehensive and include AE/LE education, counseling, cognitive rehabilitation, and the development of a plan for rehab and also a home exercise and recovery plan.

4) Scientific development over the last decade has made significant progress in terms of identifying and understanding autoimmune encephalitis, as a patient first diagnosed in 2012, I have experienced these remarkable improvements firsthand. There are obviously still a lot of unknowns about the illness, what path does research seem to be following at the moment?

Dr. Perna: It’s hard to talk about the research in a cohesive manner because there are different bodies of research on this condition. Moreover, it takes a long time to collect enough data to have reliable outcomes and this delays publication of findings that may be helpful to people. I am a clinician, and most interested in rehabilitation and trying to get people back to their life activities. There is very limited research concerning these issues since many people run out of insurance funding or stop attending treatment before they fully resume all their instrumental activities of daily living. It looks to me like there is some interesting research on diagnostics and acute treatment strategies and very limited research on rehab and long-term outcome.

5) How do you envision treatment options changing over the next decade?

Dr. Perna: My hope is that the CSF and serum testing will get more specific and efficient at finding autoantibodies and that the medications used for immunotherapy will evolve. For example, B cell depletion therapy sounds like it may have some promise.

Thank you Dr. Perna and Dominic ( + Captain)!

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A Day of Living with Autoimmune Encephalitis

by Alanna | Nov 6, 2020 | AE Warrior Personal Stories

November 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.

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.

This 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!

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

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

by Alanna | Oct 30, 2020 | AE Warrior Personal Stories

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

Read Part 1 here.

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:

He could be discharged to me and go home.
I could transport him to Georgetown ER.
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!

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

by Alanna | Oct 28, 2020 | AE Warrior Personal Stories

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

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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Prithima’s Story

by Alanna | Sep 29, 2020 | AE Warrior Personal Stories

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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Life Lessons from Eating an Acquired Mussel

by Alanna | Sep 15, 2020 | AE Warrior Personal Stories

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.

Since 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.

I 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.

Rehabilitation Strategies

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AE Warrior Dominic Interviews Dr. Rob Perna

Early Stage Diagnostics and the Relationship to Outcome:

Recovery and Relapse:

Caregiver Education and Ongoing Support:

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A Day of Living with Autoimmune Encephalitis

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

Read Part 1 here.

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

Read Part 2 here.

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Prithima’s Story

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Life Lessons from Eating an Acquired Mussel

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

Smile.

Learn to Sail.

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