Shan’s Story
Every journey with MS is unique. That, combined with how every life is unique, makes it almost impossible for any one person to relate completely to another person’s MS story. All I can do is describe my experiences, talk about what worked for me, and what I might have done differently.
In 1998, I was out sailboat racing when I became very dizzy and fell in the water. Soon after that, I was diagnosed with transverse myelitis (an inflammation of the spinal cord) and told that the weakness on one side of my body (hemiparesis) would pass. It did abate, but not without what I call “leftovers.” My left hand still tingled, and I had other sensory issues. Since it was considered a passing condition at that time, I went on living my life with few or no changes.
Over time, physical issues continued to crop up. By 2005 my diagnosis was confirmed as RRMS relapsing remitting multiple sclerosis (RRMS). My worst symptoms were dizziness and a slightly affected gait. At this point I decided it was time to face the situation and try to do something about it. Since I was afraid of needles and not enamored with the efficacy of the existing treatments, I decided to join research trials for new MS drugs. I enrolled in one trial after another. I told myself that I was avoiding painful treatments and helping to make new science. At the time, I felt this was the best plan. In retrospect, maybe I should have been less cavalier and should have taken one of the FDA approved medications, something with a higher chance of modifying the course of my disease. It was clear the illness was starting to impact my life.
Twenty fifteen was a watershed year for me and my MS. Somewhere around then, I “graduated” to a progressive form of MS (secondary progressive MS) as my symptoms, particularly my walking, continued to worsen. Choices for appropriate treatments for progressive MS were limited. Finally, I began taking FDA-approved medicines. More importantly, it was suggested that I try specialized physical therapy. Working with the therapists over these past few years has allowed me to learn more about my situation while doing my best to stave off further physical deterioration. The unforeseen “benefit” of the PT has been having access to the therapists’ knowledge of the disease and their advice about the practical aspects of living with MS. Their constant presence in my life gives me comfort because they know me, my MS, and my issues. If they see a change in my condition or a new issue surfacing, they provide immediate guidance. They keep me going by pushing me to acknowledge my disease, be safe and healthy, and fight back to the best extent possible.
In addition to finding the right physical therapist, I also found the right doctor. The physicians at The Elliot Lewis Center split their time between clinical and research work. They keep up with state-of-the-art treatment while still spending time with me. It’s an important balance. It does me no good if my doctor is too busy to take the time to listen and share their knowledge with me. The advice my physician and therapists have given me has allowed me to make a relatively smooth transition from a moderate to a more severe disability and without wrecking my home life. Nowadays my illness is obvious. A walker and braces on both legs make my situation clear, but with a more mature understanding of the disease I am better able to cope.
Overall, these are the lessons I have learned:
- MS is a journey not a destination. It’s going to take time to make progress in your BODY and in your HEAD.
- Acceptance happens a little at a time. The new stairlift in my home and the brace on my second leg are painful reminders of how MS is still marching forward, and that can get me upset all over again.
- Snake oil is out there. There are tons of “treatments,” “cures,” and ideas that all seem to involve me spending my money on something. It’s a wonderful notion, but the professionals are probably right — accepting medical advice from Facebook or the internet is not a good idea.
- I don’t know anything about MS, only my MS. Your journey is going to be different from mine. Seek the best advice and treatment and do what’s right for you.