Approximately 200 people are diagnosed with Multiple Sclerosis (MS) each week–that’s about one person every hour of every day. In 2001, one of those people was my father-in-law, Dave (pictured here with his wife, my mother-in-law, Patty, and their four grandchildren). After 11 years of on-again, off-again symptoms (very typical for his “course” or type of MS–the most common–Relapsing-Remitting) and visits to many different doctors, he was finally diagnosed, but only after irreparable damage had been done to his nervous system.

Life expectancy is not necessarily affected by an MS diagnosis, but quality of life certainly is. That’s why Matt & I have created Team Dave with a few friends and are planning to ride the MS150 in late June: we want to raise awareness and hopefully help fund research that will find a cure. This week is MS Awareness week, so it seemed like a good time to announce our plans and tell you a little bit more about the disease.

What is MS?
MS is a neurological disease in which the immune system attacks the myelin sheath–a fatty coating around each nerve in the body. Once the myelin sheath is damaged, it forms scar tissue or “sclerosis.” That scar tissue interrupts the nerve impulses that should be transmitted through the nerve, causing a variety of symptoms from numbness to tingling to complete loss of function.

Dave describes his symptoms as follows:

I walk slower with a slight limp now, sometimes with “an old man shuffle” as a paramedic friend of mine termed it. I’m happy if I can go a mile with my cane, which I use if I know I’ll be going very far. An hour on my feet is about it before I need to sit down for a while. I no longer windsurf, snowboard, mountain bike or hike. I still like fly fishing, though most of it is now from a pontoon boat. I found my legs wouldn’t kick me around in my old float tube anymore. And I can still wade a bit, though am careful to use a staff, not get deeper than my knees and avoid moving water as much as possible.

Treatments, but no cure
Huge strides have been made in treating MS, but so far, the damage done during an attack or relapse of the disease is incurable. The drugs either slow down the disease progression or reduce or eliminate attacks, but once the scar tissue is there, there’s not much that can (currently) be done. Dave’s first attack was nearly 10 years before his second, and the damage done during that time, and during the year that it took to diagnose the problem in 2001, is permanent. Dave writes:

It took nearly a year to get through my local GP work-up, X-rays, a first neurologist, a neurosurgeon, a second neurologist, a spinal tap and two MRIs before I was finally diagnosed with MS [in 2001]. By that time I had a couple of identifiable MS scars on my cervical spine and several in my brain. I’d had a few days when it was hard to even walk down the hall in my house and several months when getting around the block was all I could do. With relapsing-remitting MS like I have you partially recover function after an episode, but nerve damage remains, so there’s never a full recovery.

This hits home for us
You can see how much this disease has affected Dave–a guy who spent his early adult years building surf boards and living a very active life, but who now, in his fifties, struggles to walk more than a mile and has had to give up many of the activities that he loves. But it could also affect Matt, Gabriel & Lily in the future. Although MS is not directly inherited, there are genetic predispositions that cause children or siblings of MS patients to have a much greater risk of contracting the disease than the rest of the population.

There is hope
The advances in diagnosis and treatment of MS have been huge, but there is still a long way to go. Still, I have hope that as more people learn about MS, more people will participate in one of the 600 walks and 100 cycling events that take place all over the country each year to raise money to find a cure.

Before Dave was diagnosed, I had never met anyone with MS. Now, it seems everyone I talk to knows someone with this disease (admittedly, there is a higher concentration of MS cases in Colorado than in other parts of the country). A mom-friend from preschool, a co-worker, a relative: many people are affected by this disease, but that means many people are working for a cure. Dave, Patty, Matt, myself, and our whole family appreciate everything that’s being done, and want to take an active role in doing a bit more to help. One more quote, in closing:

I’ve been on medication for over 6 years now, requiring a daily injection. It must be working, because my MRIs have shown no additional MS scaring in that time. But taking perishable meds with me, sharps containers and the rest when we travel is a hassle and the shots are a pain, literally and figuratively. I had a pretty significant “heat sensitivity” before I started on the meds, if I broke out in a sweat my legs pretty much shut down. The meds have helped that too. An oral med is now on the horizon, something I much looking forward to, as long as it isn’t more expensive than what I use now (over $1,000/mo.), my neurologist will prescribe it and my insurance will cover it. I thank all of you who participate in raising both awareness of MS and funds for research that improves the lives of people living with it.

We are still looking for virtual members for Team Dave and of course, we’d love it if you’d consider sponsoring us. But even if you’d just be willing to spread the word during MS Awareness Week (March 2-9), you’ll be helping people like Dave, people like us. Thank you.

Posted: 03|2|09 at 9:04 pm. Filed under: Family, Multiple Sclerosis.
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