Another email that I received…


A email that I received yesterday:

Nice article. Explains exactly the problems facing stroke survivors and just getting the care they need. The sheer amount of specialists needed even for a mild stroke is out-of-this-world, despite for some they still need to find the root causes of having the stroke (with me they suspect AFib and on a month long event monitor trying to capture it when it strikes).

Trying to prioritize care is the hardest part now. I’m going to PT and seeing the cardiologist, but waiting to see a neurologist and ophthalmologist as finding the reason for the stroke is the priority (or it can happen again, after having multiple small ones … no more it must be found ASAP).

My strokes were really mild so what I’m experiencing is mild symptoms, like only certain muscle groups are weak, not the entire limb. Enough to notice, but not enough to need a walker/wheelchair and/or splints. Balance and vision took a direct hit, though. Need a cane to keep from walking sideways; and have a bilateral scotoma that makes reading like someone took an erasure to a page. Slow on focusing, like the irises take time to expand and contract, so to read then to look up distance will be unusually blurred for minutes. My strokes were very subtle “around the borders” type. Frustrating because the info online is tailored to the “classic” varieties, not smaller TIA strokes that leave smaller lesions, unlike the massive hemispheric strokes. Easier to deal with, but harder to “treat” as even I didn’t realize what groups got weak at first, which is essential info because of the 90 day window to begin focused neuroplasticisity training. Some areas like the shoulder weakness won’t even be discovered until weeks later when the shoulder pain starts. When I got home I thought I was fine. A week later,  found I was magnesium depleted that made the muscles ache like hell, and made my heart race (probably blew what little  potassium stores I had in the process too). The next week later the shoulder and arm felt weaker as the strength had ebbed by then. Three months later the areas now are all known and “set”, so from there it’s trying to train the exact muscle groups affected before the retraining window closes (have a year to push the brain to work around those lesions).

 Life is tough…but living through it gave me peace and understanding.  Now that is worth it!