As I mentioned in my "timeline" post, I was unaware at first about how long stroke recovery can actually take. When Al was finally diagnosed as having a stroke, 3 CT scans and an MRI later, I thought, "Well, good now we can start working on fixing this." My sad impression was that Al's left side had simply fallen asleep (although I knew that it much more complex than that), and that it would take some jiggling and massaging and a little PT here and there to wake his left side up. I mean, after all, he wasn't paralyzed in the way that I always thought of paralysis, which was complete lack of feeling or movement. By the time the stroke was complete, Al could still feel and move most of his left side to some extent, so I assumed it was just a matter of exercising those parts back into full functioning. I seriously thought it would take 2-3 months. Period.
Ignorance is bliss, but I was slowly immersed in reality as Al endured 6 weeks of inpatient therapy just to be stable enough to walk to the car, get into the car, and climb the 5 front steps of our house. He still relied heavily on my assistance to walk around the house, go to the bathroom, get a shower, and get his food.
OK, so he wasn't back to normal after 6 weeks. I figured a few more months of outpatient therapy, combined with his immersion back into his *real* life would be all it took to get him back to *normal*.
He definitely made more improvements with outpatient therapy. He became more stable so that I didn't have to help him walk everywhere in the house. In fact, we ditched the gait belt pretty shortly after we came home - we used it for maybe a month, tops. It just seemed to say "old man", which was a statement that neither of us wanted to shout from the rooftops, since he is only 38, and I, 41. We felt we were prematurely becoming "old" with this whole ordeal anyway, so to get rid of one of the symbols of dependence was helpful. Besides, I enjoyed having to grab the waistband of his pants once in a while to steady him - it gave me another chance to pinch his tush.
By the time he was discharged from therapy for the first time, it was summer. June 1 was my first goal for Al to be able to go back to work. That was clearly not going to happen, so I thought maybe he would resume work in the fall.
However, he received no therapy during that time, since his physiatrist was working on reducing his spasticity in order to maximize his future therapy. June, July and August passed with no therapy and not much improvement.
Finally, in September, he was re-admitted to outpatient therapy. I thought, "This is it! This is the final push he will need to get back to his normal life!" After about 6 weeks of tweaking his gait and pushing him to use his still non-functioning arm, he was discharged again. They sent him home with exercises to do and told him that just coming to therapy wouldn't help him improve - doing the exercises daily at home would. So he was left to pursue the rest of his recovery on his own.
We have new potential for help with his recovery, though, since his parents have done some research and found a Bioness representative nearby. They took him to a consultation last week, and the equipment looks very promising. The Bioness "foot drop system" uses sophisticated technology to his foot when to lift and flex during the process of walking. The "hand rehabilitation system" uses the same technology to activate the muscles of his arm and hand so that he can grasp objects and use his hand in a more normal way.
I am excited about this, yet also a little concerned that a) our insurance may not cover it, since it is a fairly new technology, and b) the testimonials given were all by people who were still using the equipment, but so far, I haven't seen proof that it can lead to long-term independence without the equipment; i.e. is he going to have to use it for the rest of his life??? That part was unclear, although the theory seems to be that the repeated activation of the affected parts will eventually create new pathways from the brain to those parts, in sort of a reverse pathway regeneration.
Al is excited because Bioness reminds him of the 6-Million-Dollar Man, his childhood hero. I can hear him softly humming the theme music as he fantasizes about leaping over buildings, etc.
In any case, although we have new hope, the process of recovery is long and arduous. I'm getting pretty tired of it - I can only imagine how this is dragging on for my husband, who is at home alone every day and faced with his limited ability every moment.
as a survivor, all i can say that recovery is hard and requires a lot of effort and discipline.it was not easy for me. after 2 years of hard work,I'm still far from my goal.My stroke is hemorrhagic and massive so I expect rewiring of the brain to take a long time to regain all lost functions.
ReplyDeleteThanks for stopping by and posting on my blog! Seasonal Affective Disorder hits many Americans every year, and is certainly difficult to deal with. I'm planning to do a series of blog posts in a month or two (maybe after Christmas?) on it. If you go under "posts by topic" on my blog, there's a section on cognitive distortions. knowing these and the information provided there can be helpful in dealing with SAD too!
ReplyDeleteWow Jen, this must have been a really tough year for you, and you sound like you are coping amazingly well, although frustrated (which is perfectly understandable.) As I posted in my last blog, maybe you have to change your idea of normal. I feel that things need to be slowed down a little. Small victories that increase Al's independence will go a long way to improving his self esteem, and take the pressure off you as the primary carer. Also if you build up to a goal, maybe, going back to work? It won't feel quite as daunting when you get there if you have taken 10 small steps in between. My thoughts are with you both and your family too, Andrew
ReplyDeleteJen,
ReplyDeleteI am intrigued by the Bioness system and how it works. If it does become an available option, please keep us updated.
Regardless, I hope you come to realize what a long ordeal this truly is. As Mike said, this is a long, long process. Eight years later, I still fall. But also, eight years later, I still make exciting progress that even surprises me. Celebrate the small, yet enormous, achievements he is bound to make. Those are what will hold your spirits up and allow the feeling of hope that continues with recovery.