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Where do I go from here?


GeorgeLesley

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Another long day to Duluth yesterday. Caused me to ponder on my future direction of treatments. We all here of things that will supposedly make us better, even promise to make us what we were again. Now that I have passed the four month timeline, I wonder. Am I starting to plateau or not. The "experts" say so. But is it a self fulfilling prophecy? We hear it from people smarter than ourselves. Also after four months it is easy for motivation to wane, so does it happen because we think it will? I have found that if I exercise less the results are predictable. If I continue to work hard I am not sure what results will be, but I do know what the alternative results in.

 

I continue to research other therapies. Trigenics (spoke to a provider last night), Active release (spoke to a provider a week ago), Acupuncture (will talk to a provider in the next few days), Ability Camp (Hyperbaric oxygen treatment and Conductive Education, sounds neat but my personal unscientific feeling is it would be more benefical right after a stroke), Neuromove (my unfortunate results have already been reported here), Saeboflex (great results), Walkaide (worked well but pricey). Graston (helpful, we can do much of it at home now we know how). Some others I have only looked at websites Like Dr. Cole in Ohio, Dr Feldenkrais, Bodyvibe, just found them yesterday, interesting but quite pricy (they start you low, then the cost of the unit you need is guess what-much higher. As a former salesman I am suspicious of their sales techiques, but still find it interesting) no other information or experience to relate.

 

I have tried to evaluate each of these on a cost/benefit basis. I am willing to spend the necessary $$$ but have to have some assurance of success. I have a personal limit of four treatments for something to show progress. If it does, I'll do what I have to to continue it. If little or no progress after four tries, good by. I am now planning to reduce to trips to Duluth. The Myofacia release and Graston therapies I get there have been effective, the shoulder and upper arm muscle tone is greatly reduced. Unfortunately it has not resulted in much more arm range of motion so far. Lesley and I think we can to both reasonably well here at home.

 

The bottom line of all of this is I have found that OT/PT's are great at what they do, but I have reached a point with all of them where they seem to be satisfied with very small improvements, and justify them as a reason to continue treatments with them. I am not satisfied with such, especially when I can do much of it at home without twice a week travel to Duluth (250 miles round trip). I keep researching, will keep working and reporting results here. I listen very carefully to what my providers say. Yesterday I asked the OT now that the Myofacia release has greatly reduced my muscle tone, why has the range of motion not greatly increased? The answer was there has probably been some muscle shortening due to lack of use. The only thing that will fix that is guess what, more exercise. I doubt that any of these things that promise a quick miracle cure will overcome that. Only long days of exercise will. Muscles grow slowly.

 

I am really not trying to be negative here, just factual, honest, and realistic. If any of you have info on something I have missed or has been effective for you, let us all know please.

 

A new day is beginning, I feel good, the sun is shining, I think I'll make it a good day.

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Guest lwisman

Posted

George,

 

First, don't believe all the medical establishement tells you about plateaus. Yes, everyone plateaus. But, it is not uncommon to quit progressing for a number of months and then start to progress again. In other words, plateaus are not permanent.

 

I have heard of no treatment that can truthfully promise to return you to your pre-stroke body. It just does not seem to happen. There are a lot of treatments that do help. Keep researching and trying things which your budget will allow.

 

Many of us (I am a ten year survivor) have seen tremendous improvement. It takes time, and it takes work.

 

I have found that although there are no panacea, most things do help. Continuing to move makes a lot of difference. Not only to see improvement, but to maintain the progress you have made.

 

You might try water aerobics. It has helped a lot of people on this network. Most Ys and park districts have inexpensive classes that target arthritis. The exercises really help stroke survivors as well. It is amazing the movements one can do in water, but not on dry land.

 

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Thanks for the input. I did notice a major improvement at about the three month point. I don't know whether the Saeboflex caused it, hard work, body just decided to get better or what, but many things suddenly started working better. Hopefully some of these new treatments will cause a similar jump. I refuse to accept a plateau, at least at my present level.

 

As far as water therapy, well we live in a remote area, no "Y's" in sight. That is one reason I am trying so much at home. If I don't help fix myself, it won't happen.

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George I know you won't give up your search and effort but it is really slow progress.

I am being fitted with both the SAEBOFLEX nd WALKAIDE but neither one has been successfuly fitted

for me to take home for use due to fitting problems or the OT not knowing how or just me

trying to find something magic, which I don't thinkis out there yet. We have to keep up the fleeting hope

and hard effort for small advances. I did cave-in and bought a scooter to run aroun town.

Chuck

 

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Personally, I think you expect too much too soon. Must you go to Duluth for therapy? Is there somewhere closer. Get the exercises that will serve you well. Remember, educators say it takes a "well" person 34 times to learn something and they really don't know the number for someone who must re-learn, but repetition makes the difference. My therapist would often get exercises on the internet. I don't know if these were in a closed site that only therapists can use or anyone, but those exercises were simple and did help.
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We live in a remote area. We have no local OT. Our local PT has reached their limit on what they can do for me. Duluth is the only realistic therapy option other than Thunder Bay, Canada, 75 miles away where my insurance is no good. Whatever I do I must be self sufficient, not a lot of help available in the area Our little town is about 1,300 people, the entire county which is the size of Rhode Island has less than 5,000 people. I am 61 and refuse to spend the rest of whatever life I have left on the couch. I don't have years for it to get better. I will leave no stone unturned in my recovery efforts. I know where complacency leads. Read my blog entry of a few days ago about how I had a goal and got lazy and complacent half way to my goal. I don't want to make that mistake again. If I am guilty of too high of expectations, my body will let me know it. Please read today's entry about failure. Thanks for the input, we each must find our own way, even if we fail some along the way.

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