A Cautionary Tale

By Allen Rucker

Allen Rucker grew up in Bartlesville, Oklahoma and has degrees from Washington University, St. Louis, the University of Michigan, and Stanford. In the 1970’s, he co-founded the pioneering video group, TVTV, winning the Columbia-duPont Journalism Award. In the ‘80s he wrote sketch comedy with Martin Mull, Harry Shearer, Fred Willard, and others, winning the WGA Annual Award for Comedy and two CableAce Awards. In 1996, he became paralyzed from the waist down from transverse myelitis (TM). Post-paralysis, he has written or co-written eleven books, including three books on “The Sopranos,” one of which was a #1 New York Times bestseller, and a memoir of life after TM, “The Best Seat in The House.” He is chair of the WGA Writers with Disabilities Committee and the annual Media Access Awards and writes regularly for New Mobility magazine and the Christopher and Dana Reeve Foundation website.

The following blog was originally published on the Christopher and Dana Reeve Foundation Blog and can be found here.

For one brief moment in the not-too-distant past – one bright, shining moment – I was convinced that I had this paralysis thing figured out. The paralysis itself was here to stay, of course, but I thought I had wrestled to the ground all the nasty ramifications of this scourge. I was just wrapping up an interminable regimen of wound care treatments and would soon be wound free. I had the right low air lost mattress to sleep on, no UTIs or nasty spills or chronic shoulder pain or prolonged spasms in ages, and all those late-night dashes to the ER were a hazy memory. All I had to do now was minimal routine maintenance — i.e., don’t get tipsy, fall over, and break my neck — and I’d be flying.

This was magical thinking. I had lulled myself, if even for just a moment, into a dangerous state of complacency.

Soon a new wound appeared on the outside of my small right toe, which was irritating, for sure, but nothing to fret over. Nineteen more trips to the wound doctor would take care of that. Then one Tuesday, a virulent new infection invaded the toe, seemingly out of the blue, and within hours I was back in surgery, this time to amputate that toe. The bacteria had entered the bone tissue, a first step toward the dreaded sepsis. I was lucky they had caught it so quickly.

Then the real trouble began. A CT scan of the same leg revealed a dangerous narrowing or stenosis of my femoral artery – the big one carrying blood to the whole leg – leading to a near total obstruction of blood flow. The vascular surgeon said it in clear English: “You are a prime candidate for losing your leg…” Before he could do anything about it, I had two weeks to ponder how I had ended up here.

It didn’t take a medical degree to realize the many missteps that had led up to this crisis. When I left the hospital after first becoming paralyzed twenty-three years before, no one sat me down and told me the brutal facts about living with paralysis. No doctor, nurse, or therapist explained the constant threat of problem wounds in my lower body. Nor did they mention the inevitability of contracture, or the permanent shortening of the knee muscles, meaning your knee is forever bent. Nor did anyone hammer home maybe the most vital lesson: unobstructed blood flow to all paralyzed regions is the greatest safeguard against wounds that won’t heal and infections invading your body.

Why did this happen? Why wasn’t I exercising my legs to avoid contracture or stimulating circulation from day one? Why wasn’t I getting CT scans to measure blood flow in my legs every six months? Was I dealing with incompetent doctors or second-rate medical facilities? Hardly. All of this took place at Cedars-Sinai Medical Center in Los Angeles, ranked by US News as the eighth best hospital in the country. The problem was not competence. It was communication.

If my internist had consulted with the neurologist who had consulted with the vascular specialist who had consulted with the infectious disease specialist who had consulted with a wound care specialist on a daily basis, in one long, unbroken conversation, even when no crisis was apparent, then none of this would have probably happened. Easy to see now; not easy to see over two plus decades.

No doctor, however skilled or experienced or caring, is thinking about your health full-time. Few internists are experts in foreseeing the problems of patients with paralysis. Specialists in, say, vascular surgery or infectious diseases don’t spend much time thinking about orthopedic problems like contracture or issues of wound care. In fact, twenty-three years ago, wound care itself was small potatoes, relegated to nurses who picked it up willy-nilly without formal training, and never the concern of plastic surgeons or other skin specialists who are very much involved today.

The best sources of what might happen to you and ways of dealing with it? Other people with paralysis. The best advice, and greatest amount of solace, I received about possibly losing my leg came from a friend who had in fact lost his leg under similar circumstances. He was living proof that there was life after amputation.

In the end, a procedure called an angioplasty worked and I didn’t lose my leg. That was a joyous day, believe me.

Even in the best of current circumstances in the U.S. – I can’t speak for Finland or Norway — you have only one principal medical adviser you can count on at all times, and that adviser is YOU. Or in my case, me. I knew experts at Johns Hopkins in dealing with contracture two years into my paralysis but hesitated to have surgery on my knees because I would be laid up for months and had no one pushing the issue. I’ve deluded myself for years in thinking I had wound care down but still struggle nightly with eliminating pressure. Of course, I never heard the words “arterial stenosis” until a month ago, but if I had done more research or asked more questions, I probably would have.

All of that is water under the bridge now. Fear of losing a leg is a great way of focusing the mind. Hopefully it is not too late to amend my own errors in self-treatment and to learn to anticipate problems long before they are manifest. Living with paralysis demands a boatload of self-discipline and mindfulness that I have yet to achieve. It is now at the top of my to-do list.

Trying to Behave for the Greater Good in Very Strange Times

By Sandy Siegel, President of SRNA

I’ve been through a lot of strange times in my life and experienced some monumental challenges. What is going on today is uncharted territory. I started paying attention to the COVID-19 stories in January. It felt like a tragic event that was taking place a world away. Over the past week, the story has become very real and personal. It is surreal. The events of the past few weeks make it feel as though life will be forever changed for my community, for our country and for the world. What happens in China will no longer feel a world away. This experience is the most profound lesson about just how interconnected and interdependent our world has become. Our world is smaller than many of us ever thought. This is a life-altering experience that will change our perceptions of the world and our place in it.

Just how serious the situation is really hit home over the weekend. I watch and read a lot of news. There was nothing about my family or friends that caused my epiphany; I don’t yet personally know anyone who has tested positive for the virus. It was the information that caused the epiphany. I live in Ohio. Our governor and our state health director have been aggressive in how they are handling the situation. My grandchildren were told that their schools were going to be closed for a while. Libraries and museums have closed. Gyms, bowling alleys, restaurants and bars have closed. Barber shops, salons, and spas have closed. We haven’t been told to shelter in place… yet. But we have been told to stay home unless we have somewhere we need to go, like to the bank or a grocery store or pharmacy. Our governor postponed our election. That was very weird and a bit scary, but probably a good thing since so many seniors volunteer at polling places, and we’re not supposed to congregate with more than ten people.

I can’t visit my mother who will be turning ninety-five this June. She is in an assisted living place that is not allowing visitors. I feel badly for her, because in addition to no visitors, they have curtailed a lot of their social activities. Social isolation is hard for everyone… it is more than hard for seniors.

My temple has restricted any activities involving face-to-face gatherings, including our services, Torah studies and education. Our rabbi and staff are being creative about conducting programs online. Our services are being live-streamed.

There are restaurants offering delivery services, and I’m considering ordering meals periodically so that I can support them. I am very concerned about how these small businesses are going to survive this episode, and I want to support them as much as possible without jeopardizing my health.

I peek at the stock market periodically, but I’m not fixating about it or worrying. I’m retired. I have a lot at stake in how well our economy does. We all do. I’m going to bet on America. This is going to be a difficult time, but I believe we are going to be okay. These are trying times, but it is not the apocalypse. Our economy will, in time, recover.

For some, these are going to be really trying times. I’m concerned for people – people I know who own small businesses or who work in jobs that are not considered essential. Applications for unemployment benefits in Ohio have skyrocketed. I’m concerned for people who do not have good benefits, such as sick leave. I am very concerned for people who do not have health care insurance. I am hoping that there will soon be state and federal government programs that will help people through these really difficult times.

I’m home. Alone. I communicate with my mom by phone. I facetime with my grandchildren. I have enough food in the house to last me for a while. I take walks outside to get some exercise, and if someone passes me on the sidewalk, I walk out into the street to give us distance and wave hello. My approach is cautious and friendly.

I wash my hands a lot. I use disinfectant wipes to clean surfaces in my home, and especially in the kitchen and bathroom. I’m really sensitized to all hygiene issues.

I’m keeping busy. I have a lot of SRNA work to do every day. I do a lot of writing. I stay in touch with my family and close friends. I have friends all over the world, and I’m constantly reminded that what I am experiencing in my neighborhood is also being experienced by my friends in the Netherlands, in Sweden, in France, in Germany, in Croatia, in Canada… everywhere. My friends are avoiding touching their faces all over the globe. I’m getting involved in so many different series that I never had the time to watch… how did we ever exist without Netflix, Amazon Video, HBO, and Showtime? I’m rereading every novel Kurt Vonnegut wrote. I’m doing a lot more cooking than I’ve done since my children moved out. And I get out to the parks near me and try as often as possible to take my camera. The virus hasn’t stopped spring and all the flowers and trees that will soon be blooming in central Ohio.

Yes. I’m keeping busy. And it is very lonely.

I have no idea how long this is going to last, but I am assuming that no one really knows, and it could be a long time.

While I go through this experience, I remain positive and I am grateful. I have sacrifices to make, but in the grand scheme of things, I have little to complain about.

There are a lot of words being spoken and written. We’re hearing and reading lots of words on television news, newspapers and social media. Lots of words; little information. I’ve concluded that for the foreseeable future, there aren’t going to be any great scientific discoveries happening, and I’m going to have to rely on the little information that is coming from reliable sources and good old common sense. Medical science needs to learn about this virus, and they need to develop vaccinations, as well as effective methods for treatment of the most difficult symptoms. As we know so well in our community, research takes time. Drug development takes time. Vaccination development takes time. Clinical trials take time.

For the foreseeable future, we’re going to be dealing with lots of uncertainty. Dealing with uncertainty is nothing new for our community.

The Siegel Rare Neuroimmune Association will provide you with the best information and support possible. Jeremy is working hard to offer virtual support group meetings and to expand our network. We are engaged with our medical community so that they can offer you informed guidance. Our core mission and programs will continue.

We are fortunate in that we have been working in a virtual space since our inception. All of us, including our staff, work from our homes. Our work has not been hindered in any way. We come to work every day and remain engaged with our community. We are answering our phones and responding to emails. We are regularly posting blogs and creating and producing podcasts. We continue to produce and distribute our publications. We continually update our website with the most current, relevant and important information. We have only curtailed our face-to-face interactions. We have a lot planned for the year in the way of education programs and our camp. We will keep you informed of these programs as we learn more about how community, state and national recommendations and directives develop.

I don’t have any great advice to offer, just my usual dose of common sense. Stay informed and make the most judicious decisions about your sources of information. Your state health departments, the CDC, and the NIH will provide you with the best information. Strictly adhere to their recommendations about hygiene and social distancing. Social isolation protects you, your children, your parents, and your community. If there was ever a case where your personal choices have a direct and profound impact on everyone around you – and I do mean everyone – this is it.

Please check in regularly on our website and read our blogs and sign up to listen to our podcasts. We will continue to offer our regular education opportunities, and we are focusing more of our attention on information about COVID-19 and how to keep yourself safe and as healthy as possible.

People with the rare neuroimmune disorders are at greater risk if they get COVID-19 than the general population. We are being warned that people with chronic conditions are at a higher risk. That is people from our community. Some of you with higher cord impact have issues with breathing. As COVID-19 is a respiratory disease, that creates a significant risk for people who have breathing issues.

The people from our community need to be even more vigilant than people around you who don’t have similar physical issues. You need to be smart and cautious about who comes anywhere near you, where you go, and your hygiene practices. And your caregivers need to be equally cautious and informed.

Now is a good time for you to contact your primary care physician and your neurologist to learn about what their protocol is should you start to run a fever and begin to develop the symptoms that could possibly be COVID-19. They all have systems in place. You need to know how your doctor wants to communicate with you.

My doctor sent me an email last week. If I start to run a fever and develop symptoms, she wants me to call her office and not just show up in her office or an emergency room. If I develop significant breathing issues, she does want me to go to the emergency room at my closest hospital, but the directive is to call the emergency room and let them know I’m on the way. They don’t want me just showing up in the emergency room.

My point is… know the protocol before you have an emergency. You don’t want to be figuring this out in the middle of the emergency.

You also need to touch base with your neurologist – hopefully, a neuroimmunologist. If you are having issues or concerns about your medications, they need to hear from you. They will provide you with the best information. They know your medical histories. Please depend on your physicians for the best advice.

If you don’t have a neurologist, this is a great time to find a good one. Please check our medical professional network. Many people from our community stop seeing a neurologist regularly after a period of time. This is particularly the case if they have one of the monophasic varieties of the rare neuroimmune disorders. If you have an emergency and need a neurologist, it often takes time to see one if you aren’t established. Please don’t wait for the emergency. Find a neurologist. You should probably be seeing one at least annually for a neurological examination.

Uncertainty causes stress. Stress will make you feel worse. Fear will increase your stress. Stress will make you feel worse. Feeling as though you have lost control of your life will cause you stress. Stress will make you feel worse.

You have not lost control over your life. You can make choices about staying safe and maintaining your health. Isolate yourself as best you can. Interview your caregivers and be sure they are doing all they can to protect themselves. If they need education, offer it to them. Ask them to wash their hands often. You can be diplomatic and kind while being resolute about what you need for them to do for you to keep you safe.

Sometimes the best medicine for the crappiest of situations is to offer help and kindness to others. Honest. It will make you feel good about yourself and will help you to find some peace in all this chaos. Engage with people on Smart Patients. Start a virtual support group in your community if you don’t have one. Get in touch with Jeremy at jbennett@wearesrna.org. He’ll help you get something started. Call your elderly neighbors and check in on them. Read our blogs, listen to our podcasts, check out our website. It would be a great time to participate in our registry, if you haven’t already done so.

I think about Pauline all the time. Going through this experience has me thinking about her even more. I think about how she would have handled all this mess. I know that worrying about Pauline would have made this a great deal more stressful for me. Whatever Pauline would have done for herself, I know it would have involved lots of great movies, many books downloaded to her kindle, and lots and lots of chocolate.

I will look forward to seeing you on the other side of this virus thing.

More than ever, please take care of yourselves and each other.

You can find resources and updates on COVID-19 and rare neuroimmune disorders here.

Fight for the Right to Accessibility

By Liv Bender

When I first got diagnosed with TM in 2009, I thought accessibility was a right, not a privilege. Growing up in a small New York suburban town, everything was simple. Buildings all had ramps, doorways were wide enough, elevators were everywhere. Accessibility was easy. Then I grew up, traveled around a bit…I quickly realized that I was spoiled. Accessibility was not easy. Accessibility was a privilege. ⠀

Here I am, 10 years later, 10 years wiser, and all I want more than anything is to live in Manhattan. Why would I choose a city where accessibility is an afterthought? Where public transportation is almost impossible? Where buildings claim they are wheelchair accessible while there’s a flight of stairs and no elevator in sight? Because I want to. Why should I have to give up a dream of living in NYC because accessibility sucks?

Only 36 subway stations in Manhattan are accessible for wheelchair users. Out of 147, that’s basically 25%. In one of the most expensive cities in the country — one of the most densely populated. How is this even possible? Because accessibility is viewed as a privilege when it should be a right. Money doesn’t want to be spent and modifications don’t want to be made unless we fight for them. Fight for the right to accessibility.

So I’ll move to NYC. I’ll find an accessible apartment that’s probably more expensive than a 5-floor walk-up. I’ll pay extra money for Ubers when I want to go to Brooklyn. I’ll struggle to get into bars and small boutiques. I’ll do this in hopes that Manhattan will make changes. Changes to make life just a little bit easier for those living with disabilities. Because it’s our right…am I right?

Disability is Not a Bad Word

By Sherri Inscho, mother of Gabby, diagnosed with TM at the age of 2

Disability is not a bad word. For my daughter, Gabby, it meant the ability to do something her way, or as I now call it “the Gabby way.”

Let me tell you a little background on me so you can understand my daughter, Gabby. As a child and into adulthood, I have always been drawn to children with disabilities. I saw their strength in functioning in their lives and was in awe of how they saw their world. I was blessed to experience being a mother of a daughter who became a quadriplegic at the age of two. My husband and I decided to not disable her but continue to parent her as who she is. We saw that her mind was sound. It was just her body that changed. Because of that, Gabby was strong and never let her disability stop her. She taught others the same.

I have many stories of Gabby from her friends and other people who knew her. One of them is about how I would have to call the parents of Gabby’s friends when she would be invited to a party to ask about their house and how it was set up. One parent was very confused by this and finally asked me why I was asking these questions about her house, She didn’t know about Gabby’s disability. I replied that Gabby was in a wheelchair. She was shocked, as she said her son never mentioned anything. That is who Gabby was. Children did not see her wheelchair; they only saw Gabby. And that is what all people in the disability community want —to be seen for themselves and not their differences. To be treated as a person.

Gabby passed away in 2017 at the age of 10. As she lived, she taught that disability is not bad, it is the ability to try something differently. After her passing, and as I grieved her loss, I wrote and published a book on Gabby’s strength and determination to not let her disability stop her from having a life. I share this book with others and let them know it is okay to be who you are and to achieve your objectives your way.

If I can help one person understand that having a disability is a strength and that you can do whatever you want just like any other person, then Gabby’s teaching will live on. If I can teach one person to see a person with a disability as just a person with creative ways to live, then Gabby’s teaching will live on.

You can purchase Sherri’s book, This is Gabby: a person like you, on Amazon here.

Being Rare Does Not Mean Being Alone

By Cynthia Wang, SRNA’s 2016 James T. Lubin Fellowship Recipient.
To learn more about our fellowship, go to http://srna.ngo/fellowship.

I’ve always had a fondness for the quotation by Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” When I applied for the James T. Lubin Clinician Scientist Fellowship award, I had decided that my role in bringing change into the world was to dedicate my career to improving the lives of children and adults with rare neuroimmune conditions. It united my love for learning about people and hearing their stories, my interest in the complex interplay between the brain and the immune system, and my desire to provide comfort and expertise to those struck with these frightening and unexpected conditions.

During the two years of my fellowship, and over the last year and a half of my clinical practice, I have crossed paths with countless families who have experienced the grief and elation that accompanies this journey. First, the complete shock that you or your loved one has developed a rare, never before heard of condition. Next, the anxious waiting period in which small victories are celebrated with bated breath. When things go well, the ecstasy of regaining sight, the ability to walk, and clarity in thought. For some the roller coaster ride would seem to end here, but for many there are reminders that their life has been forever changed- the nagging pain, the unrelenting fatigue, the anxiety that the disease could come back and strip away more of one’s self.

For all these reasons, these conditions demand that we care. Rare or not, they have led to profound changes in the lives of many, and while we have learned much, so many fundamental questions remain. Why do people get these diseases? What can we do better to treat them? How can we improve quality of life even if we can’t erase the symptoms? I am grateful to be part of this small but committed community of citizens tackling these issues. By increasing awareness through education, advocacy, and research, we demand that others care as well, and let those affected know that being rare does not mean being alone.

MOG-Ab Disease May Be Invisible, But I’m Not

By Craig Dickson

Every morning when I open my eyes, the world looks different. I don’t mean that metaphorically or philosophically, I mean that literally.

When I go to sleep at night, I don’t know what the morning will look like. Will the colours be the same? Will my distance or close vision be fuzzier? Will there be black flashes, translucent strings or places where my vision seems to fold in on itself?

I don’t know how I will feel when I wake up, or what I will feel. Will my back be ‘buzzing’? Will my feet burn? Will my ears start squealing and squeaking? Will today be the day that everything goes bad and my illness does even more severe damage? It’s exhausting, and this is before I have moved from the bed.

If I woke up with any of these things happening eighteen months ago, I would be calling in sick and going to the hospital. Instead, like many others with chronic diseases, I get up and get on with the day.

I work and I play. I smile, laugh, cry and fret. I break through personal mental and physical barriers. I’ve ridden bigger and heavier waves in the past eighteen months with my illness than before it all started. I have pushed my body to heal and manage, and my outlook and approach to life has been forced to shift. I am stronger and more capable than I ever imagined I could be or would have to be.

Every day isn’t just a matter of waking and getting up. Each morning requires a form of effort and energy expenditure unknown to me before this illness started. Each action of each day is a form of depletion, and life is now a balancing act of knowing I want to do something in three days’ time, so I have to ‘save up’ for that by missing out on other things.

Some people can see the challenges, some cannot. I try to manage without showing too much, which has been both to my benefit and detriment. I haven’t found a balance.

Those with my illness and similar autoimmune diseases are fighting a daily battle that many don’t know about and will never see or understand. Others are too. There are many chronic diseases, and mental health challenges are often invisible as well. Some people see my physical wellness and wonder how I can be sick.

The saying that goes something like “be kind, because you will meet people fighting battles you know nothing about” has never been more accurate. I am now one of those fighting a daily battle most will know nothing about.

Jonathan Narducci – the Onset of TM

The following is an excerpt from “The Patient Experience with Transverse Myelitis: An Anthropological Perspective” by Sanford J. Siegel, PhD, President of SRNA. You can purchase a copy of Sandy’s book on Amazon.

By Paul Narducci

Jonathan was born in October 2002. This was the happiest day of our lives. After trying for years to have a child, God finally blessed us with a healthy baby boy. For me this was a dream come true. I always wanted a boy and since we thought this could possibly be our only child, I was very happy. We didn’t know what we were having until Jonny entered the world and I was a proud father. All of my thoughts about going fishing, playing football and hiking were all going to come true. This is likely what most dads dream about with their sons. Seven months later everything crashed and burned and our lives would never be the same. As for dreams, that’s exactly what they are… dreams.

The day care called and said something was wrong with Jonathan; his body was limp and he was crying. To make a long story short, we brought Jonathan to Yale Hospital and that’s when we realized things would never be the same again. They didn’t know what was wrong with Jonathan but quarantined us. We had to wear gowns and masks. He was hooked up to machines and we were really scared. In the back of your mind, you think maybe a day or two and we’ll be home; things will be normal again. It is amazing how your body copes with things; lying to yourself isn’t always a bad thing. Weeks went by and Jonathan was finally diagnosed with transverse myelitis. What the hell is that and how come nobody here knows what this is. I remember saying, “I’m at Yale and you guys don’t know what my son has.”

We spent three months at Yale and watched our son die in front of us; it was one of the most insane experiences I have ever gone through. It has been years since this happened and I’m writing this through my tears, the words are difficult and I remain in deep anger and pain. Living your life in fear is the worst thing ever. After Jonathan left Yale, we spent another nine months in The Hospital for Special Care. Through that year, Bonnie and I never left Jonny’s side. We slept on cots and in chairs. Our family stayed with Jonny when we eventually went back to work. Either his parents, his grandparents or his great grandmother was always with him. People always ask me how could you do it, and my response is always, how could we not. I believe that he is with us today because of all the prayers and because we are always with him.

There have been many times when it looked like he wasn’t going to live. It seemed like I was always alone with Jonny when this would happen. After spending about a year in both hospitals, we were finally able to go home. We were going to be a family.

Jonathan is 13 years old and in the 7th grade. He goes to public school. He is a wonderful young man. He loves watching movies, fishing and taking walks with his mother. Bonnie and I made it very clear that a wheelchair and ventilator would never change what we do, just how we would do it. I have taken my son fishing, hiking and we play sports; we just do it our way. I’m just fine with that. I thank God every day for not taking my son, because he is truly my life, my world, my everything. Jonny recently made the honor roll and was student of the month. He is truly an amazing young man with his mom’s looks and his dad’s personality. Jonathan has touched many people’s lives and has inspired all of us to be better. My son is a quadriplegic, vent dependent and fed through a stomach tube. I wouldn’t change a thing. I thank God every day for allowing me to have my son in my life.

A Fathers Love

Paul D. Narducci

Wanting to die seeing you this way. If I could only take your place and throw it all away. I want things back the way it was, if I could only find a way. Seeing you lying there fighting to stay with thoughts in my head drifting away. Wanting to die if you were taken away; telling myself this wasn’t the way. Taking life for granted, you see, in my own despair you’ll be. Hoping for life because death seemed to be so near for you and me. I’m confused and wanting to take your place asking why this happened. I don’t understand, this wasn’t our plan. I just want it all to go away. If you were to go, I’d be with you soon forever together and that’s the way it should be. I go, you go, we go!

We Have Lost a Dear Friend

Remembering Michael Capen

The Siegel Rare Neuroimmune Association (SRNA) has lost a dear friend. We are saddened to announce that Michael Capen passed away last week. As many of you know, Michael was Debbie Capen’s husband. Debbie is a member of the Board of Directors of SRNA, the Secretary of the Board, and Executive Committee member of SRNA and has been with the organization from the beginning. Michael had also been involved with our work from the beginning, and many of our community members have met Michael at SRNA events like camp and our symposia.

As Debbie describes in her Hope Ambassador story, prior to her life with transverse myelitis (TM), she and Michael led a very active and hectic lifestyle. They traveled often for their flooring business and enjoyed adventuring, including even riding around on motorcycles. In December 1996, during one of their cross-country travels, Debbie suddenly lost the ability to stand and walk while waiting for a flight at the airport in Minneapolis. Michael’s goal was to get her to the emergency room as quickly as possible. Debbie was eventually diagnosed with TM. After her diagnosis, she typed the words “transverse myelitis” into her new computer and met Jim Lubin and the transverse myelitis internet club. She then flew to Seattle to meet Deanne Gilmur and, later that year, met Sandy and Pauline. This then led to her appointment as Secretary of The Transverse Myelitis Association (now SRNA) in 1997. Throughout all of this, Michael has been by Debbie’s side. They always attended our yearly summer camp for children with these disorders, and often drove families to and from the airport. Debbie and Michael were also at our most recent symposium in Columbus, Ohio.

Michael was an anchor for Debbie. Through his support and love for Debbie, he became a foundational member of our community. Michael was a soft-spoken, kind, and caring person. The families loved their time with him at camp. He loved spending time with the children at the fishing pond. He is going to be so missed by all of us.

Our thoughts are with Debbie and their family as they mourn the loss of Michael. In honor of his memory, the Capen family is asking for donations to be made to SRNA.

His memory should be a blessing.

MOG-Ab Disease Sucks, But It Doesn’t Mean Life Stops

By Craig Dickson

In the past couple of weeks, I have caught waves, trained hard at the gym, been part of a podcast, worked my job, looked after my family, been out to a show, attended a live sporting event, read books and watched TV.

I have MOG antibody-associated disease (MOG-Ab disease), so I’ve also used a ton of hand sanitizer as I have a compromised immune system, felt like I have never slept (whether I do or not, it feels almost the same), supported multiple people through issues with their illness, and experienced more visual and nerve symptoms each day than I can even list (currently I have weird black smudges flashing in my lower vision, pain in a finger, tingling lips, a slightly numb shin and a buzzing in my temples like someone has shaken up a bottle of fizzy drink – good times).

MOG-Ab is Myelin Oligodendrocyte Glycoprotein Antibody. It’s kind of like Multiple Sclerosis, but the damage happens via a different mechanism. Essentially, we all have this protein that is located on the surface of myelin sheaths in the central nervous system, and my clever body has decided to create an antibody to destroy this glycoprotein.

MOG-Ab disease can present similarly to other better-known brain and spinal autoimmune diseases and, until recently, has often presented neurologists with a subset of patients who don’t respond to regular treatments and/or have unusual brain scans (MOG-Ab disease patients often have irregularly shaped lesions).

In 2015, a blood test was developed to reliably screen for MOG-Ab disease. MOG-Ab disease is currently considered very rare, but with the blood test becoming more available and neurologists more aware, it is expected MOG-Ab disease numbers will increase.

There are no medications specifically for MOG-Ab disease. Everything we do is an educated guess, and studies are still in their infancy. It’s both scary and exciting being in the vanguard of a medical and treatment conundrum knowing that what is learnt about me will shape medicine in some small way. It makes the general disease crappiness slightly less so.

I want to acknowledge that like other demyelinating diseases, MOG-Ab disease impacts everyone in a different way. Some have partial or full paralysis, hearing loss, are blind, have limited bladder control, and a myriad of nervous system sensations. Not all of those things are my story at the moment, and I want to send a shout out to all those who have been hit worse than I have.

For me, this disease is trying to take my eyesight and my balance and is causing many other things that make life really hard on a daily basis. I don’t know what my life will look like in one year, five years, or ten years. How much vision will I lose? When will I have to stop working? When will I be unable to bodyboard? Will I always be able to walk? Every night when I close my eyes, I don’t know what the world will look like in the morning, my vision is that fluid.

At the end of the day, this disease sucks, but I am lucky. I still live an active and enjoyable life. I bodyboard, I train, I work part time, I have a five-year-old to keep up with. I haven’t experienced paralysis, and for now, the damage done to my brain and nerves can be worked around in many respects. My work for the past eleven years gave me substantial knowledge of the brain and nervous system, so I have been able to take my own steps to promote healing: single leg exercises for balance repair; strength training for muscle weakness and to counteract the medication side effects on bones, muscles and body weight; adding Vitamin D supplements (it is used for patients with multiple sclerosis) and making sure I have plenty of Omega 3 and 6 (supports brain development) from salmon, tuna, walnuts etc.

Unlike many with MOG-Ab disease, I was diagnosed early because I had a good general practitioner, a good neurologist with an extended neurology network, and access to free and high-quality health care (being in Australia). My ‘overarching’ medication, Rituximab, seems to be working, hopefully for the long term, and I still use high dose steroids daily. All things considered, I have experienced a significant improvement from where I started – almost unable to see entirely and being unable to lie down on a bodyboard in the water without falling off.

I guess I want people to know that you can keep living, you can keep pushing. You do have a choice in how you respond to this crap and the little things you do positively can make a big difference in your journey. Learn all you can about your illness, your medications, and discuss everything with your treating doctors. Go into appointments with a list of topics or questions and don’t leave until you understand. Get a psychologist on your team and also find your areas of focus (a sport, family, hobby, work, journaling).

My challenge is letting my body rest; the constant battle of not letting the disease control me, but also having to let it control me so my body can function.

It’s ok to struggle, it’s ok to have bad days with this, we all do. The difference is in how you approach your next day.

I was interviewed about my lifestyle, illness and love of the ocean on the podcast Chasing Clarity, Episode 26. People new to the disease have told me they found it useful for themselves and to help their family and friends understand what it all feels like.

I am more than happy for people to contact me about anything, and am happy to assist if I can.

If you’d like to contact Craig, please email us at info@wearesrna.org.

Instagram – @craigben84

Also check out the awesome MOG-Ab resources here on the SRNA website. It was the best I found when I was diagnosed. You can also find an online support group by searching “MOG Antibody” on Facebook.

Some Dates are Hard to Forget

By Cindy Quense

December 7th, “a day that will live in infamy,” has taken on an additional meaning for me and my family as it marks the onset of my transverse myelitis. Thursday, December 6th was normal. I went to work at the Massachusetts Institute of Technology (MIT), but the morning of the 7th my right leg was “buzzing” and felt odd. I didn’t have work and we were going to help out at our son’s new house. I did normal activities, but all day I felt that my leg was off. That evening, I mentioned to my husband, Tim, that I noticed a strange sensation in the shower – I knew water was touching my right calf but had no sensation of temperature. I was thinking it might be an outbreak of shingles, which I had had about five years earlier on my right side. The nerve sensation felt similar.

On Saturday morning, I called my primary care provider (PCP) and asked if I should get a prescription for an anti-viral medication. As I described the issue and sensation, which was now also moving across my torso, she told me that’s not how shingles presents and told me to go to the emergency room (ER). We went and spent most of the day getting exams and several MRIs. They concluded that it was a pinched nerve and that I should have an additional lumbar MRI and see a surgeon on Monday. The next day, it was spreading into my left leg and I was having trouble walking. Knowing what the ER looks like on a Sunday afternoon, I called the doctor’s office to see if they could schedule the MRI. I was told it could only happen through the ER and if I felt worse, I should head there. Assuming I had a pinched nerve and it was late on a Sunday, I thought it best to wait until the next day. I felt like I was stumbling around that house that evening and slept in the extra bedroom closest to the bathroom. Around 3:00am, I told Tim I thought it was time to go back to the ER, but first I would take a shower. No such luck – I could not get in the shower at all because I was having problems standing.

Tim took me to the ER and walked me to a wheelchair, and then after more tests and MRIs, I was admitted; at first to a regular room, but I was then moved to a step-down unit since I was paralyzed from my bra line down.

The next 36 hours were the most frightening. Working at MIT, with doctors, I made a call to one and received the best input possible. He spoke with the neurologist at the hospital and agreed it was one of two things, but treatment paths were different. I had to wait for an EMG before the correct path was chosen. I had no idea what that was, but as they came hourly to test my breathing, and as I felt tingling moving down my arms, it felt like things could not move fast enough.

Being in Boston means that you are in one of the best medical cities anywhere. And, even in smaller hospitals, there is excellent care. Thinking I was going in for a pinched nerve, we went to our local hospital, which is excellent in many ways and the care I got there was wonderful. However, I had to wait for testing until Tuesday afternoon when the specialist was available.

I can’t really explain the frame of mind I was put into by the situation, but I will try. I was paralyzed and could not sit up or move. They used a board to transport me between my bed and a traveling gurney, and off we went through the halls of the hospital wing into the doctor’s wing. This was very familiar to me from past medical appointments, including those with our children’s pediatrician. The exam rooms are small, and this one was no different. The turn into the doctor’s suite was like going into another dimension. On the left was a long working station with two people answering phones, to the right was the tiny exam room I was meant to go in and straight ahead looked like two bedrooms. (It ends up that the suite was shared with the sleep lab!) As the attendant went to present me to the doctor on the right, he looked at me and said, “You can’t get on the table here?” There was a tiny exam table across the room. A room that was filled with a computer cart with a computer that looked like it was from the 1980s, with a lot of wires hanging off.

After the doctor realized I was not going to walk into the room and get on the exam table, he told the gentleman pushing me to wheel me into the room head-first because the room was so small that only half of the gurney would fit in. While I was there, the ancient computer shut down and had to be rebooted, something I had not heard of for ages. Then the doctor, who was on my right side, asked his assistant, who was on my left side, to turn down the light. If I could have moved, I could have done this as the wall switch was only a foot away from me. As it turned out, the assistant had to crawl under the gurney! And the bizarreness continued. After completing the upper body electrical testing, he told his assistant to push me out and turn me around. She tried, and then the doctor called out to the staff answering phones, “Igor, come and move this.” They all forgot to note that the attendant had locked the bed – which I’m sure is according to protocol.  I was the one to point this out and then proceeded to basically explain to them how to do a K-Turn in one of the bedrooms to get my bottom half back into the tiny exam room. After testing the bottom half, they called to get transport back up to my floor. The assistant hung up the phone with a huff and said, “can you believe it, they want me to use a computer to put in a request – we don’t use computers!” Instead they used a pager to get another assistant. He had no idea how to get me where I needed to go, and at one point I was left in a hallway as he went to get help. Finally, a nurse came along and brought us through a locked unit to an elevator which would get me where I belonged. As the elevator opened, there was my original attendant – he knew where to take me.

Results from the EMG meant I did not have Guillain-Barré syndrome, so by default treatment was started for transverse myelitis. By Tuesday evening, I was given IV steroids. After one day I could wiggle two toes on my left foot, after four days I could sit up (if I held on), and after five days they could transfer me to a wheelchair using a standing pivot device. That also got me into the shower – an amazing delight!

During the week in the hospital, our challenge was to keep up our humor and to test that of the residents and neurologists. What I was going through was not linked to a clear cause. Having worked with a research group for the past twelve years, we knew how to try and find out information. This was a nightly challenge for us and our relatives. My sister said it was leprosy – based on a good Catholic school education and memorizing the lives of the saints. And, for me, especially after the steroids kicked in, I had plenty of time to look up what may be going on. The team showed up each morning and I gave them my list. Tests continued and no clear cause was identified, and it was classified as Idiopathic Transverse Myelitis. When I spoke to my MIT connection, he said the “best outcome” may be a single episode, but you have to be comfortable with no conclusive reason and know that you cannot live with the stress you were under before – he was the first one to suggest that there would be a life change ahead.

Finishing up the IV treatment, I was transported next to Spaulding Rehabilitation Hospital in Charlestown, MA. Given a tour my first day there, Tim ran into an acquaintance from our kid’s years in school. He was recovering from a bicycle accident and was finishing his rehab that day. He told us – this is like Space camp and you should do everything they say. He was right. I was amazed when they showed up the next morning to take me to the gym. Physical therapy (PT), occupational therapy (OT), therapy of every kind was given and, even though I spent the holidays there, by the end of it, I was walking out! I was using a walker, but I could move in a very stilted fashion and that felt like a huge achievement!

I started outpatient PT the following week on a Tuesday but by Thursday I had marked weakness and was strongly advised to get back to the hospital. Our local hospital, and the neurologist there, did not know what more to do for me. Again, we reached out to my MIT connection and again he came to the rescue. He made arrangements to link me with the neurology team at Beth Israel Deaconess Medical Center (BIDMC), and off we went to another ER and admittance. Again, lots of tests, and the decision to rerun the IV steroids but this time with an oral taper to ensure that the acute phase was over. After two nights in the hospital and very little sleep, we convinced the team to allow me to do outpatient IV treatments. Having experienced two attacks, the fear of going off the steroids existed, but I finished treatment after twenty-three days and got back in the rhythm of outpatient PT two times a week.

So many things have changed in our lives. The house has been retrofitted with handrails and bars; a shower bench sits in the tub; a closet that used to hold sweaters is filled with medical supplies; fashionable clothes have been swapped out for loose fitting ones – I’m still hoping to find a magic fabric that doesn’t hurt; sneakers replace boots and heels; work is over and a social life has not started up again. It’s just too overwhelming and getting through the pain, exhaustion, and anxiety that each day brings with it takes all of my focus and energy.

We attended the 2019 Rare Neuroimmune Disorders Symposium (RNDS) to learn as much as we can about TM: How do you manage the many aspects that impact your life? How do you live with uncertainty about recurrence? What is the research community learning and what do they recommend? How do you maneuver through the insurance minefield? (Blue Cross Blue Shield recently cut off my PT after thirty-four sessions citing insufficient progress. Subsequently, two grievance appeals have been denied.)

Attending the 2019 Rare Neuroimmune Disorders Symposium (RNDS) was a worthwhile and enlightening experience for both me and Tim. Being new to this world, it was comforting to know that such an organization existed. The ability to meet others dealing with rare neuroimmune disorders, specialists at the forefront of the research, and people dedicated to making a difference gave us a sense of community and of hope, and for that we are grateful.