It Has Been Ten Years

By Jeff Berger

Ten years ago, I woke up to find my right hand was asleep, but then it just would not wake up. This was the beginning of a walk-through hell. Doctors and tests and more tests. Words tossed around, like multiple sclerosis, cancer, amyotrophic lateral sclerosis (ALS) and prognoses that would send shivers through any poor soul. As each week passed, I would have another appendage affected: left hand, right foot, left foot, lower torso and then upper torso. The pain was 24/7 and a twelve on a ten-point scale. No sleep and no answers, just fear of the unknown.

On April 8th, my body in its weakened state finally gave up and I passed away. I was revived and taken to a hospital where they finally discovered by an MRI that I had a lesion at the level of C2, and I finally had a diagnosis, transverse myelitis (TM). But what the heck is that?

I spent the next five weeks in the hospital and rehab. Initially I heard that I might not be able to walk again, but I resolved to prove them wrong. I had to learn how to walk again with no feeling in my feet. I had to learn how to use my hands again by using my eyesight to replace the feeling that I had lost in my hands. I progressed from a wheelchair to a walker to a cane and finally independent walking… but this took place over years. I wore an attitude that I could not just accept the status quo, I had to fight with every fiber of my being to maximize my remaining skills and learn how to appreciate each day and find joy rather than sadness over the “what ifs.”

It is now ten years later, and there is not a day that has gone by that pain has not been my constant companion. But… I have a full life. I can work out in my shop creating tables, bird houses and other projects, (currently working on building a 5-level cat tree). I can do the grocery shopping and clean the house. My wife and I have driven cross country three times and traveled to Europe, Hawaii, Mexico and many other points on the map.

I consider myself to be the luckiest guy in the world. My point of writing is not to minimize the horrible after-effects of TM but to express to all who suffer that you can never give up, you have to stay positive and believe. It may not be perfect, it may not be how you envisioned life, but it is your life. Treasure life, and you may just surprise yourself, as well as the doctors. I send this message to all who are affected by these various neuroimmune diseases: I wish you peace, health and good miles before you.

The Way I See It

By Maleah Moskoff

April 19th was the 3rd anniversary of my rare myelitis diagnosis/spinal cord injury. I have heard others call it their “crappiversary”; I choose to see it so differently, and I’ll tell you why. If you knew me prior to April 19, 2017, let me re-introduce myself. My name is Maleah, and three years ago I walked into the University of Wisconsin (UW) emergency room (ER) in pain. After being dismissed by urgent care professionals twice and told I had a virus, I grew progressively worse. A spinal tap confirmed something was not right, and it was neurological. I was beyond scared. I was not familiar with emergency care, and my life up to this point was pretty average in the accident department. Flash forward three weeks—I was in a room somewhere in the UW and paralyzed from the chest down. My neurologist’s note read: “Our best diagnosis has been a monophasic viral infectious encephalomyelitis (brain and spinal cord) vs. a post-infectious encephalomyelitis (the result of the immune system’s reaction to a viral infection).” They told me, “You’re one in a million.” Around day 21, I was discharged to an inpatient rehabilitation hospital where I would live alone, working out three hours a day with Occupational Therapy (OT)/Physical Therapy (PT).

Ok, you’ve heard this story. But what I have to share today, that many more might relate to, is being in crisis. I was isolated for seven weeks from my home, my work, and my life as I knew it. Fortunately, family could visit me. I couldn’t do life for myself. I depended on others for getting me food, bathing me, toileting me, and transferring me from bed to wheelchair. I was vulnerable. My job was to give my all for three hours in the gym with OT/PT. I did my work, sometimes in tears, but I had goals—walk again, regain my independence, re-join my family and my home. It was sad, lonely, and hard. I came home in a wheelchair, adjusted to my surroundings, sometimes felt like I was Jimmy Stewart in “Rear Window”, and I am here today to tell my story. It did not last forever, but my life as I knew it would never be the same. I have chronic pain in my back, the “MS hug”, clonus and neuropathy in my feet, BUT I can walk, and I have hope and lots of love. I have an attitude of gratitude for my crisis. It shifted my perspective on time and what is important. Less FOMO (fear of missing out) and more JOMO (joy of missing out)!

Hope can take you to places you’ve only imagined and there is no “going back.” There is a new path, a new normal. There is adjusting, pivoting, and creative changes. Acceptance is difficult for humans, but the sooner you acknowledge your situation, grieve the old way/old life, the sooner you might see the miracles in the present moment. I have days where “I am over it,” and I am sure you do too, in this present crisis. Cry, scream into a pillow (not at your housemates), draw, write, make music… find your strength in the now. “No storm lasts forever.” I have taken a long pause once before, and I can tell you a thing or two about life after the play button is pressed again. Yes, it will be different, but so are you. Embrace the “Yahtzee shake.” Enjoy the slow-down. You didn’t choose it so maybe it’s hard to be “out of control.” Slowing down feels weird when we’re so used to “go, go, go.” Busy has been glorified for too long. I’ll leave you with this. I wouldn’t change a thing. All the heartache brought me to this place. I like who I am and who I am becoming. 

So next time you think you just can’t handle one more day, let me tell you something, you can and you will! Forward…It’s the way. “Not all storms come to disrupt your life, some come to clear your path.” We’re paving a new road, one that may be smoother and brighter.

NMOSD and COVID-19: Ankeen’s Story

By Ankeen Dajadian

No one expects to get sick, especially not a healthy 16-year-old who had never stepped foot into a hospital before the summer of 2017. A few weeks into that summer, I was involved in a minor car accident with my parents in the car. Besides some neck pain, we were actually okay, but the next day, I started having terrible migraines that persisted over the entire week. Towards the end of the week, I started noticing that my legs were feeling numb. Then one day, I fell on my knees from weakness in my legs, and when I looked down, I saw a small cut on my knee, yet I didn’t feel it. This incident was the defining moment when we decided to go to the hospital.

By the time we had reached the hospital’s emergency room, I couldn’t walk or feel my legs. I was transferred to Children’s Hospital Los Angeles and was finally admitted on June 19th of 2017 – my 17th birthday. I was in the hospital for a month, and in the first week, the doctors were just confused and trying to desperately find a diagnosis. By the second week, they had started me on a 5-day course of IV steroids. The third and fourth week I spent in rehabilitation trying to learn how to walk again. The doctors had given me a 30% chance of ever walking again, but when I was discharged, besides some balance issues, I was well. It was truly a miracle, and I thank God every day for it. I went through six months of outpatient physical therapy. My diagnosis was transverse myelitis. Nine months later, in March of 2018, I spent my Spring Break in the hospital yet again. This time, I had blurry vision and pain in my left eye. Another week of steroids and I was back to normal. My new diagnosis was something I had never heard of in my life, neuromyelitis optica. I was put on long-term medication, and everything was seemingly okay.

For the next almost two years, my health was good and managed, but in January of this year, I started having pain in my right eye. My medication had failed me. I didn’t imagine that it would come back. Another week of steroids and my eye was almost back to normal. My neurologist prescribed daily low dose steroid pills until we figured out a new plan. Fast forward to March, I started new infusions and was feeling more hopeful about my condition. However, in mid-March, I somehow contracted coronavirus (COVID-19). It started with loss of appetite and by Day 3, I had developed a cough. By Day 7, I started experiencing shortness of breath and I developed a fever. The next day, I went to the emergency room (ER), and as soon as I mentioned that I was immunocompromised, they admitted me. I took the COVID-19 test, and the next day they told me I tested positive.

Over the next few days, my breathing got worse and I was put on three liters of oxygen. They started me on Hydroxychloroquine, the drug used to treat malaria, and gave me antibiotics for my pneumonia. The worst part of all of it was that I was alone. Through only phone calls and Facetime, I could see my family. I was transferred to University of Southern California Keck Medicine, and my doctor told me that things didn’t look good. I kept a positive attitude and a smile on my face, and I prayed. In a couple of days, my doctor came and told me that my chest X-ray was getting worse but that my blood tests were getting slightly better. In the following days, my breathing improved, and they took me off the oxygen tank. My doctor said that sometimes a patient gets better faster than their lab results show it. This was true for me because by Day 8 of being in the hospital, I was discharged. My labs were still not normal, but I didn’t need oxygen and had had no fevers for the past couple of days.

Now, a little over a month after my hospitalization, I am still recovering, but I feel so much stronger. I haven’t started my new medication for NMO since it’s an immunosuppressant and right now I need my immune system to recover from the virus completely. This puts me in an uncertain position since I could possibly have a flare up of my disease, but I’m not focusing on the negative. Right now, I’m just happy I was accepted into the University of California, Los Angeles as a Biology major. Now, I can pursue my dream of becoming a doctor and helping others like me.

Join me for #GivingTuesdayNow

On May 5th, I am making up to a $10,000 donation to the Siegel Rare Neuroimmune Association as a matching gift for #GivingTuesdayNow, a new global day of giving and unity as a response to the unprecedented need caused by COVID-19.

I am making this contribution with a real sense of urgency but also with a deep sense of gratitude.

We are going through one of the most difficult, perilous, frustrating and frightening times in our lives. We are concerned for our loved ones, we are concerned for our futures, we are concerned for our society and our world. As a rare disease community, we share heightened concerns about our health and our well-being. We all share concerns about our physical health. And we share concerns about our emotional and mental health. Many of us are shut in and alone. Others are having to negotiate the complicated and challenging reality of having to allow caregivers into our homes to assist with all our quality of life issues. The physical and psychological difficulties are not going to disappear any time soon.

At the same time, the financial toll on all of us is incomprehensible and staggering. So many of us have been living on the smallest of or no reserves, struggling day to day to make ends meet. Millions of us have lost jobs. Many of us either work in or own small businesses that have been forced to close. Whether those jobs become available is uncertain. Whether all those businesses will be able to reopen is uncertain. The stock market tumbled with this economic uncertainty. So many of us who rely on pensions and investments for our retirements have been handed a massive dose of doubt about our futures.

During this public health and economic upheaval, I have concerns about funding continuing operations at the Siegel Rare Neuroimmune Association. We are a small business; a small business that has nothing to sell to generate revenues. We offer the most critical services to a very large community that includes people with rare neuroimmune disorders and their families, the medical professionals and medical and academic centers who care for our community and perform research, other non-profits and medical and pharma companies with whom we share goals, government agencies involved in research and public health issues, and international organizations who serve our members from more than 110 countries around the world. We serve a very large community, and the work we do is so critical because our community depends on our efforts and no other organization does what we do.

I am beyond grateful that we have been able to keep our six employees and our legion of volunteers working. We all work from home. Thus, being on lockdown at home has not impacted the work we do every day. We remain connected to our community offering support. Our education efforts continue. Our research programs are ongoing. How we are offering these opportunities has changed and will continue to change as we engage in physical distancing. Our support groups and education programs are going to be virtual. Our family camp this summer will be virtual. While we will miss all these face-to-face interactions with our community, we are hopeful that we will also get greater participation from people who have difficulty traveling to our events.

SRNA has always operated with very low overhead, and we are taking steps to even further reduce our costs. For the foreseeable future, we are going to curtail the printing and mailing of our publications. While you won’t be receiving our materials in the mail, we will continue to offer all of the educational information we’ve always provided, and in fact, we will be able to include even more content without the concern for printing and mailing costs. Please be sure our information is not going into your spam folders. We don’t want you to miss any of this important information. It is also a good time for you to find us on our social media sites and to spend more time reviewing the wealth of information offered on our website.

SRNA’s current and long-term survival depends on generous contributions from our community. With the economic concerns that face almost everyone, our donations have dwindled. We understand why this is happening. We have only the greatest compassion for the many struggles people face day to day. People want and need to return to work. People are being crushed by the financial stresses that impact their families.

It is a horrible time and a difficult situation to be asking people for money – but I must. The future of this organization is at stake.

I know many of you can’t. I am so sorry for this entire situation and the horrible predicament with which you are dealing.

If you can give, I implore you, please do. Now is the perfect time to contribute. If you can make a difference for this organization and for our community, this is the time to make that difference. Any donation you make to SRNA on May 5 will be matched dollar-for-dollar, up to $10,000.

On May 5 you can:

I am making my donation in memory of Pauline Habib Siegel – the person who has inspired me to do this work for the past twenty-five years. Her memory should be a blessing.

— Sandy Siegel, President of SRNA