Blogae wARRIOR pERSONAL sTORIES
AND TOPICS OF INTEREST
The plane lifts. Like many traveling for the first time since the pandemic began, anxious feelings churn beneath my calm exterior.
Is it safe to fly? Will I regret this later?
At the very least, the destination promises to deliver on novelty, excitement, and energy—qualities that had been missing from much of the past year. As we reach cruising altitude, my nerves are gradually dampened by daydreams of stepping inside iconic landmarks, taking in a show, and sating my photographer heart with vistas of an expansive skyline. Soon, my imagination is running wild with all the things to experience as a first-time visitor to the City That Never Sleeps.
How this piece by Erma Bombeck came to me will always be fresh in my memory. There was a synchronicity to it that touched my heart. Our son Matthew is now 30 years old. When he was four, I was fortunate enough to be accepted into a very elite advocacy training program for people with disabilities called Partner in Policymaking. Raising a child with autism is hard. Attending a yearlong program that met for a 3-day weekend each month was challenging for Jim and me as Matthew required 24/7 care and without back-up, that meant Jim would only get a few hours of sleep a night during those periods.
I am an Autoimmune Encephalitis (AE) survivor. I’m also a life coach.
Meaning matters and it’s taken me years to ascribe my AE journey any meaning beyond “Why me!?” My story may be just like yours or infinitely different, but one thing I’m sure of is that you’re not nuts.
This is not game over. You will feel okay again and I look forward to one day reading your resilience story.
Major depressive disorder, commonly called depression, is a disorder that affects more than 168 million people worldwide1,2. Symptoms include depressed mood, lack of energy, loss of interest/pleasure, sleep disturbances, significant weight changes, and thoughts of suicide3. While depression can occur on its own, which is known as primary depression, it can also be caused by other diseases or medical conditions. This form of depression, called secondary depression, is relatively common in patients diagnosed with chronic illnesses, and is one of the key factors resulting in an impaired quality of life experienced by patients with chronic diseases.
It’s been a rough 10 days. That family member with the huge personality that everyone tries to avoid, moved in again…the one that takes over your household, no matter how hard you try to keep control. The one that makes everyone run around like crazy, makes everything spin out of control and for which you can do everything to the best of your knowledge and capability, but it just isn’t good enough!
I sit here and think about how to begin and write the third part or story or chapter in my AE journey. It is difficult because many days I am confused, tired and lose focus.
I have AE GAD65 Stiff Person Syndrome. My ongoing symptoms include many things one of which is the inability, at times, to be able to focus.
My AE journey began quite unexpectedly in 2015! I was attempting to see a doctor for a consultation for spine issues at the Cleveland Clinic. All scans, x-rays, MRIs etc. were sent there for the consult from Ohio State’s Wexner Medical Center.
When it comes to responses by the body, the immune response is usually a good thing. Your body recognizes an invading pathogen that does not belong there: bacteria, a virus, and other substances. In response to these pathogens, the immune system must react in a regulated manner and then shut off when it has solved the problem. But sometimes this goes awry, creating an overactive reaction that does not turn off and can end up harming the body it is trying to protect.
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.
On the first day of April 2020 my life was to change forever. I just didn’t realize the depth of which I would fall into this dark world.
I woke in the morning of the first of April to vertigo, something, I had never experienced before, but knew all too well through my nursing training that something was amiss.
I cried with relief and joy over having learned from my Doctor that the testing for the antiLGI1 autoimmune encephalitis antibodies which attacked my brain a little over two years ago were no longer present in my bloodstream or spinal fluid. Sure, I am likely to have residual difficulties with cognitive function and memory, but I at least feel I’m finally on the road to recovery. I cried because I know I’m one of the lucky ones.
“Princesses, they’re just like us.”
My friend Christina once commented that on Facebook, under a picture of Princess Kate. You know, the most beautiful woman in the world. The one whose three children always look clean and like angels. The one who stepped out of the hospital in a slim fitting dress and heels the day after giving birth to her first child. I remember slowly walking out of the hospital in sweats, days after I had my first born, wondering if I’d ever be able to sit down again. Yeah, princesses, they’re just like us.
I recently lost a beloved parent to anti-NMDA encephalitis. It is still hard to talk about it as my sister and I went through many challenges to get her diagnosed. I understand the pain and difficulties that many of you go through with this disease and having physicians or other health care professionals who are unfamiliar with this disease and its treatments.
Autoimmune Encephalitis Awareness Month February 2021. Learn all the activities planned for this year’s awareness month and how you can get involved. Raise awareness for AE to help us save lives.
My name is Catherine Cloutier, and I’m currently 28 years old. My journey with anti-NMDAr autoimmune encephalitis started in April 2015, at the age of 23.
I had previously completed a human nutrition degree at Université de Montréal and I am still practicing as a Registered Dietitian in Québec, and I am a member of my professional order (Ordre professionnel des diététistes du Québec).
Diagnosing a problem in the brain can be a major challenge. Unlike a broken bone,
many neurological problems are extremely hard to see. A computer tomography (CT) scan of
the brain, which is similar to an x-ray, can usually only detect obvious damage, such as bleeding in the brain.
Telemedicine allows patients to have a remote, non-emergency office visit with their health care provider by using a smartphone, computer or tablet. Research shows most patients are highly satisfied with telemedicine visits, and in most instances these visits are as good as in-person visits.
By definition, guilt is like shame. Or pride or embarrassment. It has been described as a self-conscious emotion, one that involves reflection on oneself and sometimes on others.
This is a subject that is difficult for AE Warriors, caregivers and medical personnel on so many levels. As 2020 turns into 2021, I believe this is worth taking a look at, talking about, facing head-on — and putting to rest — in a kind and loving way. Turning over a new leaf, so to speak, as we head into a joyous, healthy and prosperous 2021.
December 24, 2020 | Tabitha Andrews Orth My letter to Santa. ATTENTION: YULETIDE BUREAU WISH DEPARTMENT Dear Santa, As you know, I have given great thought to my Christmas wish this year. I hope I have made your 'NICE LIST", as my wish is in the form of a favor....
December 19, 2020 | By WhereAreMyPillows.com
The classic story arc of autoimmune encephalitis goes something like this: a patient presents to the hospital emergency room with an abrupt onset of psychotic features that include hallucinations, paranoia, anxiety, and strange behavioural changes.
December 9, 2020 | By Sherree Bargo
Larissa was born after a normal, healthy pregnancy on May 29, 2007. The next 5 years were seemingly “normal” as she hit all of her milestones on time and ahead of most of them. She was potty trained by 2, reading Dr. Seuss books by memory at 19 months! She was classic first child doing everything early.
November 26, 2020 | By Jeri Gore
I have often pondered over this day throughout my life. From being with loads of family laughing over a huge turkey dinner and all the talk and smiles and analyzing whose stuffing is best and simply being together. To being away at college or jobs that have carried us off and unable to return home for Turkey day.
IAES wishes to honor all those caregivers that have not only loved, helped and never given up on all those with any form of AE but who have also helped all those suffering or have suffered from all forms of illness! Below are some thoughts and writings from both caregivers and those who wish to thank the many caregivers who have helped them.
We honor all of you….
Dysautonomia is a collection of disorders that involve dysfunction or impairment of the autonomic nervous system (ANS). It affects more than 70 million people worldwide, and can be caused by a number of disorders, including autoimmune encephalitis (AE)1. To better understand dysautonomia as a symptom of AE and other disorders, it is helpful to first know how the healthy ANS works.
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.
October 30, 2020 | Reggie’s Story: A Yearlong Roller Coaster of his “Brain on Fire” Saga by Dr. Robert Larry Reese-Johnson. 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.
October 28, 2020 | Reggie’s Story: A Yearlong Roller Coaster of his “Brain on Fire” Saga 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.
October 14, 2020 | By wherearemypillows.com for IAES.
It’s a lovely day in the neighbourhood. The sun is blooming, birds are shining, flowers are sing—wait; that’s not quite how it goes.Then it hits you: oh yeah, your brain is injured.
Every parent or caring adult knows all kids have gone through enough this year that they deserve to have a fun and memorable Halloween celebration, keeping in mind the Covid-19 rules of necessary social distancing.
Trick-or-treating will certainly look and feel different this year (the masks alone will change costumes – maybe with a little creativity for the better!), and you can make sure every child gets to experience the candy, the costumes, and the fun of this truly kid-friendly event. Here are some tricks you can use to make this Halloween a treat for most families.
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.