This week I had an appointment with the neurologist who diagnosed me twenty years ago. (I talk about my diagnosis in the first podcast episode.) It’s really been great having the continuity but three years ago I had to leave my insurance plan. My spouse got a new job and Kaiser wasn’t an option. My 3-year experience with another healthcare system is a long story which I need not go into now. Suffice it to say, I’m thrilled to be back with Kaiser and my neurologist, even though I’m her only DM1 client.
Before she came into the exam room I noticed several new informational posters tacked up to the walls. There were articles and classes promoting different types of exercise and movement for people with Parkinson’s disease, Multiple Sclerosis (MS), and stroke survivors. Kaiser even has special support groups for adults with MS. But this poster was the most impressive — all about stress and how it manifests both physically and emotionally. That’s really the basis of my self-care treatment; whatever I can do to mitigate stress in my life so that I feel better. And there are so many stressors in life. Thankfully I continue to add to my tool case of de-stressors.
In the past I’ve always had a long list of questions and issues to discuss with my neurologist during our annual appointment. There have been periods when I saw her more frequently than once each year. But now, I feel like I’ve got a good handle on things and only had a few questions. We talked about many things — travel, my experience with a different healthcare system — and she did her routine exam which seems kind of subjective since she’s manually checking my strength and range of motion. She’s done this every year and takes notes so perhaps it’s less subjective than it seems.
To my surprise, she was surprised. With just about each test she remarked that I’d improved. She even said a few times, “you’re stronger!” I don’t want to get too excited; I won’t be signing up for any marathons or Himalayan treks. What I will do is continue the program I have cultivated — gentle yoga, Pilates, qigong and a multitude of other healthy physical and emotional behaviors.
I walked out of the doctor’s office feeling quite full of myself. I know I have a progressive muscle disease. I know it’s dramatically changed the course of my life. But I’m going to do whatever I can, for as long as I can, to live the fullest life possible.
That’s good to hear! My guess is that your exercise program addressed any part of your weakness that was due to deconditioning and that it prolonged strength in areas where you might be losing it. You should definitely keep doing what you’re doing if it will stave off further deterioration and preserve the muscle strength you still have. You may also be creating new neural connections that bypass some of the problem regions.
One has to be careful though in taking such an extensive list of symptoms and associating them with stress. Neurologists (more so than just about any other specialty) are notorious for discounting people’s very real physical symptoms and viewing improvement as some sort of evidence that their original assessment may have been incorrect and assuming it wasn’t physical in the first place. Since she did not elaborate other than to say you were stronger I would recommend requesting the notes of that appointment just to be sure of where her mind was going with her assessment. Although I’m sure stress makes any chronic illness even more difficult, I wouldn’t go so far as to say that all of those symptoms on that list are attributable to or “associated” with psychosocial stress. And yes, manual strength testing is subjective. Your take on that was correct the first time. I’m not a big fan of the standard neuro exam, as it tends to rely too much on absolutes (ie, if you see this sign it means such and such, if you see that sign it means such and such), resulting in alot of assumptions about the patient that may or may not be based in solid science. Bodies don’t read books and each person is an individual with a unique brain. I believe there is alot still to be learned about how the brain works and individual differences, and about regenerative medicine and neuroplasticity. There may be a certain sub-set of patients that can beat the odds because of something different about their brain. I found it very interesting when reading about ALS for instance that there do seem to be a certain sub-set of patients who defy what the books say should be the progression of the disease. That is a very good model showing that even in diseases with the worst prognosis hope still exists that a patient might not respond in the way the books tell doctors they will. That does not mean their diagnosis was wrong (as some doctors might assume) but is a testament to the body’s ability to compensate and in some instances even regenerate!