I’m Neglectful, Here’s an Update

   I haven’t really written a lot for this blog.  I feel like I’m neglecting it.  I am not satisfied with this blog so I put off working on it and when I finally get to it I spend a few minutes working on one thing and then I bail.  But, this time I actually have some decent news so I figured that I would post a bit of an update on how things are going in my stroke world.

  My therapy ended a couple of months ago.  I believe I wrote about that.  I have not done any real workouts since.  I do so much despite my disability that I think I may have reached a mental plateau where it feels pointless to push myself harder.  I don’t know how other survivors do it.  There is this fellow survivor, Louie.  He had his stroke 2 years after mine and he’s going back to school, he travels everywhere and he’s in a relatively new relationship.  An article for his local paper was just published about  how he uses a gym to work on his recovery instead of therapy.  He’s about to go back to work.  He doesn’t wear a brace and he doesn’t seem to have any other side effects resulting from his stroke.  He works non stop on his recovery.  I asked him his secret but he really didn’t have much to say.  That seems like a theme among the survivors that make the most progress.  Meanwhile, I keep telling myself that I’m doing good.  Sure, I wear my brace because I’d face plant every two steps if I wore sneakers without it but I dropped my cane on my own and haven’t picked it up in weeks– which feels amazing!  I could fight and work hard and use all this equipment like K.C is always getting thanks to her nationwide support system.  But then I tell myself that learning to live with my disabilities is better than fighting it until I finally give in to the reality that some things will never come back and then I’d have to learn to live with it.

  So, all in all, I’m doing pretty good.  My migraines have acted out with annoying frequency but I am no longer tied to a puke bucket when they strike and sometimes I am even able to work it out just by not giving in to the pain.  My memory is getting worse but I’m doing my best to pretend that’s not a worrisome issue.  I just blame it on my age.  32 is old enough for your memory to start failing, right?

  JJ is doing great!  His occupational therapy has ended and he doesn’t have to go back.  He’s not quite symmetrical and is left side dominant but it’s no longer an issue.  He doesn’t need cues to acknowledge his right side anymore and his fine motor skills have improved dramatically.  He still has some sensory issues but loud noises no longer bother him like they did just a year ago.  I don’t know what they did for that but it involved using music therapy.  I probably should have asked more questions but it didn’t really seem like it was anything more than fine tuning those quirks.

   We got him a new AFO and it’s already improved his posture and mobility dramatically.  I don’t understand.  Everyone told us to take him to see this woman who had this long list of experiences, references and whatever else.  But she was rude, arrogant and cold. This new guy we brought him to was the exact opposite and with far less experience.  He was very humble and didn’t treat JJ like a client or patient but like a kid that needed something he could offer.  Right away, the hunching JJ did as he ran ended.  His therapists said it was a way to feel secured and centered while he ran because of his leg and lack of balance.  If that’s so, then this brace instantly brought him security and confidence.  I wanted to hug this guy for helping my son and being so nice about it.

   Unfortunately, it’s not likely JJ will grow up without the need of a brace.  I keep getting mixed answers to my questions.  I’m choosing to lead with the most negative of answers because being positive only to get knocked down to reality with a hard swing of a broom to my legs is not an option.  The closest thing to a direct answer I was given was that between the ages of 6 and 10 he will probably start using an SMO which is shorted than an AFO.  She [PT] said growth spurts happen in this period so it can be difficult to use a brace during this time.  She then said after this period it’s possible he may outgrow the rest of his deficit and appear as though there had never been weakness in the first place.  It’s also possible that he may need some sort of brace for the rest of his life.  This saddens me because I go back to blaming his minor issues on what I let happen while I was pregnant with him.  I don’t want him to suffer because I had a stroke.

  I’ve been thinking about my future lately and that’s about where the positivity ends.  So I will close here and leave that for another post.


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