I was able to do 10 weeks of physical therapy this winter, twice a week! I loved it. It felt good to have a regular "workout time" scheduled into my week, both mentally and physically. My joints ached a lot less, I found that I could just move easier, and I felt more purposeful in my self-care. I liked being able to see quantitative, measurable improvements, even if they were small, but I got excited when they were significant, too. We saw more significant progress in the first five weeks, and then it kind of leveled off over the last five weeks.
When I began, and I was told to kick my leg out or lift my arm, nothing happened. But as time went on the correct muscles began to respond - fire, activate, engage, whatever you want to call it - they were obeying my brain's command to "move" in a way they haven't done in years. So even though I still can't visibly kick or punch, my muscles are training themselves to do those things.
A couple new things I have noticed that I can do now: tear away Christmas present wrapping paper and slowly set down a mug of hot tea (instead of dropping it). A dear friend told me last week that she noticed that I am doing more things and my energy lasts longer throughout the day; I used to do less and get tired a lot faster.
On January 28, I went in for my #8 treatment. I asked my neurologist if he thought I should continue with PT, and he said, "If you think it's helping, keep it going." In other words, "Whatever makes you happy." He didn't have a whole lot of new insights for me, and I was a little frustrated... I don't want to waste time, energy or resources on something like this. If I'm going to keep it up, I want to know it is making a difference - fast or slow, small or significant, it's about forward motion, people!
So, I called the Biogen representative, whom I affectionately refer to as "my drug guy." As usual, he was incredibly helpful. He said that the research has shown on-going significant progress in Spinraza patients. If you look at the graph at the bottom of this page, you'll see that the progress isn't steady and constant, though. There are times when it levels out or slows down and there are times when it makes big leaps. But no matter the rate, it's upward, forward, increasing progress. So my drug guy encouraged me that even though my progress in PT seemed to plateau after five weeks, that doesn't mean I've maxed out my potential; the potential for growth increases over time, just as the potential for deterioration increased over time before Spinraza.
I've decided to resume PT in March. I think what may happen is that I do a month of PT and take a month or two off, and then do another month... or something like that. I don't know for sure yet, I want to consult with my therapist. But on my "off" time, I don't want to lose momentum. At home in the mornings and evenings I'm doing the exercises I've learned, a little bit every day. I'm hoping to maintain what I've gained, and when I go back in March, we can add in some new things and slowly build it up.
I'm learning the value of steady continuity, in intentionally using muscles and pushing them a little further all the time. Keep it going!
