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.
Nicole Cavales — yoga instructor — was diagnosed with the BRCA1 gene mutation making her a high risk for breast and ovarian cancer. She chose to have surgery and reconstruction. Nicole’s plastic surgeon referred her to Hilary Nakao, D.PT, — physical therapist — to help with recovery. Both women are part of the latest podcast episode exploring how critical movement and exercise are to one’s daily life.
Ted Abbott is making his dreams come true in Virginia. He started a nonprofit organization,