Saturday morning I attended a talk about Multiple Sclerosis with my parents. The topic is germane to us because my mom has it (finally diagnosed 3 1/2 years ago). Her brother was diagnosed about a year and a half ago too. It’s a wicked disease, that presents in different ways with different people, and can be difficult to diagnose.
Mom’s progression has been kind of slow. She’s able to walk, although not nearly as far as several years ago. Treatment seems to help her, essentially holding her MS more or less at a stalemate recently.
The last few years have been a real education for us. Having a chronic incurable condition really stinks, but I admire the courage mom has shown in dealing with it. That’s not to say she’s not scared about what lies ahead, and that she doesn’t get frustrated. But she seems to focus on the things she can control (securing the best treatment, engaging a support system of doctors, and other patients) rather than dwell on what she can’t control.
I am embarrassed at how little I know about MS. I should be devouring every bit of knowledge that I can, since I may be at higher risk (two close family members diagnosed!). The sum of my knowledge distills down to the following :
- It is an autoimmune condition in which the t cells attack the myelin sheathing on your nerves. There appear to be several distinct types of autoimmune activity that happen in different cases. Sometimes the t cells appear to go haywire and attack the myelin. Sometimes something bad in the myelin appears to trigger the autoimmune response. In either event, the end result is demyelination.
- There are apparently two distinct phases to the disease : inflammation and degeneration, although I can’t find these phases detailed online now. Early treatment (during the inflammatory phase) seems to have positive bearing on staving off disability. This may be because actual nerve damage (axon death) has not yet occurred, and because it is possible to "remylinate" (regenerate the myelin sheath around nerves).
- People who live farther from the equator have a higher incidence of MS. This may indicate a correlation with Vitamin D deficiency. There are more cases concentrated in the Seattle area than in any other city in the US. Seattle sits at an oblique angle from the sun, and has more cloudy days than many other places. Apparently the disease prevalent in sunnier climes is pretty different in profile than it is where we live.
- It is unclear whether the origin is genetic, environmental, or a combination of both. The disease may be triggered by environmental factors (such as a Vitamin D deficiency), but you may be at increased risk if you’ve had certain viruses in the past.
- There is apparently a 10:1 ratio of nerve lesions to "exacerbations". This means that nine of ten lesions go clinically undetected. Rather than effecting one’s ambulatory abilities, they most likely hit the cognitive or emotional capabilities. There is about a 40% incidence of depression in MS patients. Wow.
Several months back, mom told me that she’d met someone I know from work in an MS support group. I hadn’t seen this guy in about ten years, and from time to time had wondered what happened to him. I knew him as a very good engineer (I know folks who have worked with him), and remembered that he was very active too. He told me that the week he was diagnosed, he’d ridden his bike 150 miles. In six weeks, he progressed to the point that it was difficult for him to walk 50 yards. We had lunch together and he told me a bit about his experiences living with MS – dealing with some of the physical and cognitive issues.
This second-hand life experience has been a real education. Beyond understanding the physical consequences of MS, I’ve learned a bit about how people relate (or don’t relate) to people with disabilities.
About a month back I had a dream. I was trying to run up a small hill during a race. There were people lining the streets and cheering me on. Try as I might, I couldn’t get my legs to move quickly enough to get me up the hill. It was weird, because it didn’t feel like fatigue. I just couldn’t get my legs to go.
Last weekend, when I was struggling to finish the Capital City Marathon, I thought about that dream. Yesterday, when I was pushing myself through the last mile, running up Mount Si, I thought about that dream. Not a day goes by that I don’t feel blessed with reasonably good health. I don’t know if keeping myself in good shape has a bearing or not, but it gives me the illusion of control. It makes me feel like I’m keeping my immune system strong, and my active neural pathways plentiful.
Well – I did call this the illusion of control.