Looking for insight on my level of disability from other hemiparetics (preferrably those not "healed" in a matter of days, weeks or months).
It's been like 2.5 years since my bleed and I am still hemiparetic. I have not been to therapy in over...it's been a long time. I realize my lack of progress amounts to a number of things and they are all my fault. I have a lot of reasons and excuses (yes, there is a difference between the two) as to why I am "still like this."
I chose to focus on other areas of my recovery first and I'm now trying to refocus on my physical deficits even though I am not where I wish to be mentally and emotionally. I still go crazy, I still get severely depressed and I still find myself in a blinding rage for no apparent or obvious reason but the frequency of these "episodes" has lessened (finally).
I have little to no memory of the therapy I had once received. I am now on a solo foot cane (went from hospital bed, to wheelchair, to platform walker, to hemi-walker, to quad cane and now my lovely wooden one-footed cane). My left arm is completely useless and embarrassing, it's got like...I refer to it in likeness of that alien arm syndrome. I don't think that exactly exists, I think most YouTube videos are a hoax but my arm seems to act on its own - it responds more to my emotions and the weather than it does to my commands: Do other hemiparetics experience this?
I replied to a post on balance on this site a few months ago and randomly people will reply as well. I read all of the responses through my e-mail and I noticed a lot of "do this" and "do that" but no real comparisons to anything I experience. My balance is rocky on a good day and I don't leave the couch on those few really bad days. I noticed a lot of people have suggested squats. I've tried squats and even after weeks of trying I get ridiculously dizzy when I do them (probably a result of the motion sickness combined with vertigo - I am a victim of both). Does any other hemiparetic experience this?
And my biggest worry involves doing everything wrong. I remember some of my therapists being overly cautious about alignment and "not learning the wrong way." I can watch all the YouTube videos I want, I can read all the info I want but when I put myself on a mat to give this stuff a shot (with or without my husband's assistance) I become fearful that I will train myself into a heavier limp and "step" off whatever it is I was attempting to accomplish. I don't want to be worse, and I don't want to undo what little I have gained (I've worked so hard to be only this far). Does any other hemiparetics have these fears?
I'm currently on disability and my husband acts as my caregiver. I have high anxiety (it just keeps getting worse) on top having these physical issues. While doing research I noticed that a lot of hemiparetics seem to be in wheelchairs. Is this true? Or is it some sort of subliminal sales pitch? If it is true, I suppose I should feel more blessed about my "disposition." Even though I am no longer in a wheelchair, is it absurd to still feel I require a caregiver? My doctor gives me a hard time when I ask for the work excuses for foodstamps (my husband has to have a valid reason for not working while we receive foodstamps). I always feel like my doc thinks I am lying but I don't think he even knows I have drop foot :/ I feel like he doubts everything I say but I also try to consider the fact that he's only a few years out of school, it's probably normal for him to be so apprehensive. Do other hemiparetics have caregivers?
I think that is all I can think of right now, I totally failed at keeping this simple, my apologies.
And if anyone was wondering, the reason I am suddenly asking these questions is because I finally got medicare and I'm just waiting for my medicaid to get approved so I can return to therapy. I am looking to get a headstart at home so that I can give my therapist a good starting place when I finally return. My county "poor folks program" requires a very low co-pay that I found too difficult to afford so I backburner-ed my therapy; yeah, I'm a 47%-er mooch, lazy bum :(