Yesterday, I called Outpatient Rehab and cancelled Bob's appointments. All of them.
I tell you, it was a hard thing to do.
But Bob did not want to go to therapy on Friday. And he still did not want to go to therapy on Monday. So we talked about it. Well, "talked" as best you can with someone with expressive aphasia. The reason he gave was that his left foot "hurts" and "ow!" even more when they get him up standing and walking. And I asked him if he wanted to ever go back and he said "no" and then, "sorry, sorry, sorry" with tears in his eyes.
Bob's left foot is his "unaffected" foot which has been crippled by post-stroke dystonia. I have noticed the dystonia getting all around worse, to the point where I cannot even manually uncurl his toes, and his neck is more and more difficult to move and even his left hand has developed "dystonia tremors", making it harder and harder for him to draw....
I talked with his therapist and asked her if it was at all possible to "postpone" Bob's therapy until after the Botox injections. She said that if it was more than 30 days, we'd have to get a new script and get another insurance approval then have a new evaluation and pretty much start over from scratch. But she said she'd be happy to work with him again, after the injections.
So there will be a lot riding on these Botox injections. Like the ability to ever walk again.
I am told there is only a 50/50 chance of the Botox working. Then there is another chance that, even if they work, the effect will wear off long before the insurance will approve another injection. Then there is the chance of weird side effects.
Plus the Botox doctor didn't think it would help Bob's foot. And he didn't even want to try it. Though two other doctors said they thought it would...
We see the Botox doctor in May and I will have to try to convince him to do Bob's toes in addition to his neck. Bob is already on the "injection list" for July.
It looks like it's going to be a long, hot summer....
7 comments:
Diane,
Yes stopping therapy now isn't optimum. Yes there will be hassles starting it up again. Didn't I tell you he would let you know? And you were worried. But in the long run, he will make better progress.
The reason most doctors balk at leg and foot Botox injections is because it is still yet to be approve in the US. Used only in extreme cases.
I'll readily admit Bob is an extreme case as is my leg. I finally got approval after six months worth of waiting and fighting for it. For me, it took regression to the point of not walking because after constant adjustments to my AFO, the inversion of my foot was worse than the AFO could accommodate. Keep trying.
Son't discount the Botox. I had severe doubts myself. But even it helps a little bit with the dystonia that's more than you have now. For me, it's a lot about comfort. My arm is no longer contracted and drawn up. I can even manage some active range of motion with it. That's an improvement.
You take small steps first before you can take big ones. I too developed a tremor in my unaffected hand. It can get real irritating. Mine is a side effect from the muscle relaxers.
Botox stopped being effective for Mike, so he is scheduled for a Baclofen pump test in May. Has Bob's doctor suggested anything along those lines? Mike is nervous, but also pretty desperate to find something that can ease the spasticity in his arm and leg. Fingers crossed you guys are able to find a solution too.
I'm sorry, Diane, but maybe your and Bob's recovery journey isn't over yet. I've been continually surprised how my own recovery progresses, but by going up and down and forward and back. Perhaps after this lull, there will be more going forward yet to come. I wish you both good luck and good fortune.
I'm so sorry that therapy won't work for now, but I think you made the right choice. Sometimes you can't just push through the pain.
Does dystonia ever get better on its own?
Thanks everyone, for your comments!
Grace, I don't know if dystonia will ever get better on its own. I am told "there is no cure" though I do know it is because of damage to the thalamus of the brain---
and the brain can heal itself, right?
I do know, botox for dystonia is followed up with therapy.... so--- guess we will see what happens
I do always have hope... And sometimes miracles happen.
I'm sorry you and Bob are so stressed about what to do right now. This post has made me think of both of you a lot.
Sorry I'm late on the comments. I too think it is the correct thing to do for now. It's appears that Bob was enduring the pain in therapy to please you more than anything. I'm glad you sat down and talked with him about the pain and the therapy.
Whether the botox therapy works or not does seem questionable, but it is something that you and Bob have to at least try.
As always, you and Bob are in my thoughts and prayers.
Hugs, Dan
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