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Entering yet another transition. Bruce had his Botox today. Doctor did more on his wrist and his knee. I look at those needles, the length and even as a nurse, grimace every time Doctor puts one in. Bruce has a great tolerance for pain, and he knows how painful this is, but agrees to go every time. I can barely lift his right arm to help him shower, so I know he needs it, but still I am so proud he agrees that he feels better, needs it and agrees to the treatment.


He'll be a sore puppy for a few days. Puncture wounds are the worse. Even this afternoon, putting weight on his affected thigh to help him sit up caused great pain. And he was off a bit - no Estim or hand brace tonight. And even Pema mentioned that his fluid intake was down. It is great to finally understand that he has concerns for the BR issues and monitors it himself. He'll be getting some PT and OT, whatever Medicare allows. So we are waiting to schedule that.


As to his weight, he is down another 4 lbs. For three months work not bad, but his follow up is in August and I told him I would like to see another 5. April was a tough month for us, so need to get back on board with Colleen - now that she is done touring - LOL.


We have been adding more chores here and Bruce is stepping up. And cognitively I have noticed some very subtle changes - more chatty, initiating conversation. Is part of this me relaxing and accepting he can do more independently and Bruce recognizes that? Hope so.


So, new therapies on the way. Botox kicking in and we shall see. Debbie


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Debbie, I have to say Bruce has come a long way in his recovery process for two years so far. I just don't see or understand how he can tolerate those needles in his arms, and be looking at them stick him.


I have to close my eyes when I get needles, always have, and I certainly could not stick a needle in my body at all. I learned that fact when they gave us Snake Bite kits. I could not stick that needle in my body so I would have died had a snake really bit me.


I tried to get Botox shots from a doctor in my area of town but never found a doctor nearby to get it done. I didn't really look to long or very hard to find one! I guess I'm at that point in life where I will just keep on recovering as best I can with what I do and pray I continue to improve in my condition!

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Debbie, while Bruce was getting the needles for Botox, Larry was getting electrodes put on his throat for swallowing. His therapist was asking, "do you still feel the pins and needles" when adjusting the voltage.


Larry use to be so afraid of needles pre stroke but since he has had many Botox injections, he has become use to them. I cringe when I see the needle go into the hand. That is the worst one.


Good for you in getting more therapy for Bruce. He will do well.



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dan did 2 sessions of botox and then started to refuse --- to painful, this from him who had a relatively high tolerance to pain still suprised me... sad to see the hand sorta "wither'" but he has a right to no more pain... and with dans nueropathy now i very much doubt he could tolerate much at all with out sending pain through out his whole body.. catch 22 dont we know --right ??--- bruce was /is so awesome he buddied up with dan so well... and i know if we can continue at least the NY trips and the CT trips they would really bond ... dan, bruce and ray --- so opposit but the same.... life sure throws curves...

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Ha I need to get back on board with my cholesterol diet after all the food on the cruise. We'll have to brainstorm.


Wish Ray would agree to go back to therapy, and maybe even Botox, but there comes a point that I don't want to fight about it anymore. We are both very stubborn so it can get ugly. A group from his old rehab/therapy place were on board the ship with us, by coincidence. A reminder to me that they are still there, waiting for Ray's return. We did 10 visits each under Medicare earlier this year, which I thought was the limit. Turns out he had two more, plus they can usually get an extension, since they are changing the rules on cut offs. But I told Ray 10 visits, and boy he sure knows how to count. We'll just try to get out more this summer, I guess.

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I have herd a lot about Botox but i am unclear what it is used for. Can someone tell me what it does and what does it help? Thanks.

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botox same stuff the rich little old ladies use to fill their wrinkles is actually just a dirivitive of botulism ... ( spoiled canned foods) the botox actually relaxes the muscle, keeps it from contracting... it is painful , but i believe a good product..if the short duration of pain can be tolerated... so it is used for cosmetic ( deep frown lines - if the muscle is relaxed no frown) -- eye - rapid eye blinking issues ( i'm not real sure ) and for a variety of spasticity issues... well worth looking into if mike suffers from spasticity...

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Also used for migraines; the girl who worked there told me she got it all the time. It was 30 shots, I believe she said. Now I know where all of Ray's leftovers went.


Botox works, but it's also a real money maker for the doctor. The pushiness of the process and the price (not that I paid) bothered me a bit. Maybe it's just our medical group? Plus I hear you eventually become immune to it and it stops working, so it's not a wonder cure.

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"Now I know where all of Ray's leftovers went." Colleen - lol


I've seen the bill from Larry's Dr. and it is thousands of dollars. Larry has had the injections for over 2 years. It does wear off after a few weeks. I haven't taken Larry for his this year yet. Priorties - swallowing!



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Our co-pay through Medicare is $600.00 a session. Treatment for us without insurance is $2800.00 a session. Bruce has an incredible immune system. Botox is a bacteria. The body's immune system will recognize it as such and yes, eventually it will not work.


We are in year two - sessions every three months. For Bruce, it kicks at 10 days and lasts 10 weeks. It is impossible to schedule Bruce's Physiatrist, so I make next appointment when we have a session. Doctor insists that every 20 weeks is OK, but it is not for Bruce, so we go with my plan. I know our time is wearing out.


With overtoning in the lower leg, Bruce's only other options are the Baclofen pump - the placement on Bruce's spine is high and even his surgeon is not comfortable with it, so it is tabled for now - increasing his medications. We can up the Baclofen oral medication and will have to do so when the Botox no longer works and increase his Zanaflex, but Zanaflex zonks him. He can get through therapy if need be. But when we tried an additional 1/4 dose in the daytime, Bruce asked that it be stopped. He slept all morning long.


If one does not suffer overtoning, just the normal (?-LOL) stroke residuals, Botox can be considered. In Bruce's state, it is a must. Debbie

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