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Sunday, May 6, 2012

A Turn for the Worse

On Friday, Bob and I went back to see the neurologist. I have been quite worried about him as he seems to have lost ability to hold his head up and, not only that, his head tips to the left side (his unaffected side). More and more, it often seems his whole body is leaning to his left. It's very weird and more than a bit unsettling, to say the least.
Bob playing Scrabble.
Notice how his head is dropped down and leaning left and his left shoulder is lower than the right
He seems to be "stuck" in this position....

The neuro doc confirmed my worst fear: he said that the CIDP has returned. Actually, what he said was he thinks it's the CIDP. He did not do any tests on Bob except for tapping him with one of those little reflex hammers and asking Bob to try to hold his head up as much as he could and looking into Bob's eyes with a light... 

I asked him what we could do, if Bob could start the CIDP treatment, but the neuro doctor said that IV-IG (the standard for CIDP treatment) was too risky for Bob--it could cause another stroke. That basically any treatment for this problem would be too risky, so unfortunately there is nothing we can do... though he did give me a prescription for a neck brace.

Bob sitting at the edge of the bed....
He cannot straighten up from this position.

We talked then about Bob's neck pain and the neuro doc confirmed what I had told the pain management doctor which is DO NOT take Bob off the Warfarin, EVER. As that would be a HUGE stroke risk for him with his blood problems. Good thing I didn't listen to the pain doctor. The neuro doc told me that he thought doing the facet treatment while on Warfarin could be too risky. It could cause spinal bleeding and that could be fatal.

So, I guess there's really nothing we can do about Bob's neck pain, either... except beg the pain mgt. doctor for more oral medications--which I am rather doubtful he will do, but I will try at our next appointment.

Next, the neurologist checked out Bob's right arm which has grown very painful. He diagnosed a "shoulder impingement" and is going to order more PT just for that problem.

And he is going to order Botox for Bob's arm pain. We are waiting now for the insurance approval on that procedure.

One of the biggest problems all this is currently causing is that it is making it very difficult for Bob to practice walking at the rail. Now, instead of just leaning on the railing with his hand/arm, Bob's head and shoulder are actually brushing against the wall, while his whole body is sort of twisted inward, toward the wall.

The other day, I found a floor length mirror in the alley and took it home and put it in the hallway, thinking that it would be helpful if Bob could see his posture while walking and maybe he could be able to self-correct it.

Unfortunately, he cannot look up to look into the mirror. I, however, had a good view of what he looked like from the front and he looked so darn pathetic that I couldn't help but to begin to cry.

And Bob heard me and asked, "You sad?"

And I told him I was worried he would never be able to walk again....

And he said, "I strong!"

He raised his left arm and made a fist with his hand and said, again, with conviction, "I strong!"

"I know you're strong."

He wheeled his wheelchair back to the beginning of the rail, to start another practice walk. And while he wheeled backward, he said, "I walk! I walk! You see."

I guess, I have to have some faith in him. And we have to keep trying.

But I tell you, right now, I am heartbroken...


Grace Carpenter said...

Oh Diane and Bob, you guys are incredibly strong. But could the gods give you a break? Just a little bit? I'm thinking about you.

Anonymous said...

I agree with Grace, can't good people like you all get a darn break. D. I know you are very strong but please feel free to message me and vent anytime my friend.

You know tho maybe we should trust Bob, he said he's strong and he'll walk, I for one am going to believe him. Tell him I'm thinking good karma!!!

Love, Patricia

Anonymous said...

I cannot begin to tell you how saddened I am to hear about this. I know from experience here, how through hard work we get our loved ones two steps forward only to have something happen that puts us a step or two in reverse. I love Bobs attitude however, never give up. He and you are strong in so many ways. My prayers go out to both of you. Hugs, Dan

metalgirl162002 said...

I know it has to be frustrating going through setbacks like this- hopefully Uncle Bob will be able to power through this one like he has some of the others!

Jenn said...

Yes, keep the faith. Even through all this adversity (advershitty?).
Although....research has shown the mind can heal the body. Who knows? With Bob's positive affirmation "I strong", etc., perhaps he's gearing up for that miracle! And why not? Sure is time for a big one!!!

Muchas love to y'all <3