A little warning, this post is a bit of a downer, but understand this blog is not only to provide resources, but my outlet to write & be honest in how I’m feeling.
Every year close to the anniversary of the stroke I will try to post an update to where I’ve landed so far. To be honest, I’m mostly a glass half-empty sort of guy, but trying to keep it on the up & up when it comes to this stuff. This past year was a tough one from many angles, certainly not just limited to my health condition. Since this is my stroke blog, I’ll focus on that.
My biggest setback was just crossing a six-month mark since my last, having another seizure. This caused me to lose ground both physically and especially mentally. The AEDs did then kick in to do their job, but the anxiety held on for months and really is now mostly under control. Post-stroke I was so adamant about getting off of every damn one of pharmaceuticals which they automatically force you on per the one-size-fits-all ‘treatment protocol’. Now I’ll likely need to be on the AEDs the remainder of my life, joy! One of the two AEDs, Lyrica is f***ing with me terribly with it’s long list of side effects. You know if you have major surgery & they give you opiates for pain causing constipation? Well, that’s one, but ongoing. It also makes me very drowsy, which is even starting to affect concentration at work. It affects my balance. I feel it’s also screwing with my immune system, as I’ve now been sick twice in a span of two months, where normally fend off most any bug that comes along. I have a head full of snot threatening to go down to my lungs as I type this.
The above are the things I have little to no control over. But sources of perhaps more frustration & depression stem from my lack of motivation to get off my ass to not only exercise every day, but what everyone says is key, repitition, repitition (a.k.a, boredom). I’m a list guy, so liking to check one more to-do off my list, exercise being one, the sheer monotony of it is my battle. Now, that said, they say to find something enjoyable that happens to be exercise too. I am into skiing, riding my recumbent cycle, kayaking on the lake (rarely), walks. One problem is that each activity are seasonal here in Seattle and just when I get going with one, the weather changes where I can no longer, losing my momentum. Plus, my disabilities & reliance upon others for some of them is another roadblock.
My continued battle with atrophy & stamina are tough. The first year I found physical activity so much easier in some ways, as I still had most of the muscle-mass I had pre-stroke. It’s amazing how having a learned-non-use hemiparetic lower arm/hand will do to your entire half of your torso for example. There is just so much weakness & loss. Stamina-wise, two years ago, I was able to walk the three miles around Seward Park. Today, I think I would be doing good to walk a mile. Getting back on my trike in the spring will be interesting in how much pulling myself from the bootstraps to get out there. Skiing this winter is many orders of magnitude harder than they were two short years ago! Again, I think a lot of this has to do with setbacks such as the epilepsy. I rarely even walk/bus/rail/walk to the office anymore to avoid stress of the commute fearing trigger of a seizure. I will find myself walking around some downtown & short walks around the neighborhood, but that’s about it. I know, could be worse, still in a wheelchair.
Every three months or so, I get Botox injections in my arm & hand to help with the spasticity & tone. Botox’s efficacy starts wane over many times though as your body gets too used to it. Well, this last time around I noticed a big quick decline after only a month to where that would normally be 8-10 weeks. I contacted my ‘rehab’ Dr. and all she had to say is that it probably due to reduction in efficacy, being sick, the winter cold, or constipation. Oh, all of these apply, yay! But another big change I noticed only a week or two now where it’s suddenly become quite the opposite, even though all of those potential causes still exist. My hand & arm are actually much more relaxed. This may sound good, but what Im fearing is that the muscles such as my finger extensors have become so weak, flaccidity has started to set in. To be fair, I have yet to get a professional’s opinion on this, but I know tone is actually a good thing with regards to long-term recovery. So, we’ll see and trying not to get too freaked out around that.