This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all.

After undergoing the liberation procedure, I was thinking about following a rehabilitation plan with a physiatrist. But I have doubts. Is it real or it is yet another fantastic invention to fill pockets with money from poor souls such as ourselves?

So far:

Drugs have not worked.
Physical therapy has not worked.
Everything else seems not to have worked.

Why would rehabilitation with a physiatrist work? Are they money vultures eating patients' flesh?

very sou(r)

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

I don't undertsand what you mean by "have not worked". Do you mean have not cured? Are you refering to your own personal experiences or people with MS in general?

When I say "they have not worked" I mean they have not even remotely fulfilled what they promised, to a point that they were equal to taking/doing nothing.

I can only speak for myself.

Yes, I know, MS is complicated and unique for everybody blah blah blah, as if they knew what MS were. I only care about practical results, not theoretical. I don't care how complicated MS is. I only want a short answer: How useful can rehabilitation be? Is it worth the money and time or it is a waste?

sou(r)


PS: BTW, scorpion. Is your job related to the field of education? Teacher, professor etc?

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Ok Sou before I answer that I need to know what happens if I say yes. I feel like I am being set up for a Sou (r) tongue lashing!!!! lol

Sou,

Marie, #2 at Stanford reported that rehabilitation assisted - not sure of others.

'Lost' posts would show you that Scorpion is involved with stem cell research and expects to make millions there.

Interestingly, in China where they are doing stem cell treatments, there is intense physical therapy over a 4 week period which some would argue has been more beneficial than the SCT.

Phil

Millions I tell you! The wheels on my wheelchair will be gold plated! I will party with those memebers of the National MS Society who, gasssspppp, are trying to raise money to fund further research that could one day cure MS.I will have women knocking at my door hoping they picked the day I don't have the MS "limp". Wait I see it!!! My "lost" post where I expect to make millions from stem cell research!!!

Scorpion said:
My name is scorpion and I expect to make millions due to my wife's interest in stem cell research.

Oh yeah. All the recent research pointing to the benefits of exercise for people with MS would seem to indicate physical therapy would be beneficial for us.

LOL! That 's fantastic scorpion.

The fact that we almost ALWAYS disagree does not mean that I hate you or want to have you trapped somehow. We have been arguing for months and I don't know you at all. I am a computer programmer, by the way.

Honestly, I find your opinion quite conservative, which I don't think it is something bad. Science itself is conservative (not with the political meaning of the word). You remind me of a professor of mine and this is why I have asked.

To the point: Are there any rehabilitation success stories out there? I hate when I hear about "realistic expectations". What is a realistic expectation? So far I have been promised everything and have been given nearly nothing. I can't afford yet another failure story, economically or emotionally.

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Trust me Sou I in no way view are disagreements in a negative way but I in fact think our "back and forths" are healthy! I am in fact a just a lowly social worker so your statement about me sounding like one of your old college professors was quite a compliment! I think what brainteaser Phil is referring to is that my wife is a college professor and her research centers around the treatment of stem cells to treat/cure cancer. I posted awhile back about how her and some of her younger colleagues have to fight against "cronyism" in the science world. Many times old ideas(and old scientists) continue to be funded by old bureaucrats at the federal level because of friendships between themselves and researchers formed decades ago. Since I questioned the scientific validity of Zamboni's study people seem to have the impression that I (and others on this board) are narrow minded and somehow stuck in old ways of thinking about MS. This is so far from the truth. I believe that when the cure for MS comes it is going to be from someone like Zamboni who is willing to think outside the box BUT that does not mean that this person's theory/idea should not go through rigorous scientific testing/scrutiny no matter how promising their reults seem to be. Whew!!

Sou,

I think that chrishasms has been doing that. Maybe you can pm him.

Fernando

Rehab can work on three things:

-build up your existing ability to compensate for lost function
-develop new ability if the potential is there for it
-learn work-arounds to compensate for lost ability.

So in rehabbing my leg, the approach includes:
-strengthening surrounding unaffected muscles
-exercise using the weak muscles, so that if they can recover function, they have the option to do so
-bring a walking stick when I go hiking

Will rehab help you?

Heck if I know. I can say that my mostly-homegrown rehab program (some good help from a PT at the outset) has resulted in significant improvements. I still have a wonky leg, but it can do way more than it could 1.5 years ago. [I do not think overlap with remission is a factor. I'm counting my 'rehab' progress from starting about 6 months post-remission. And I have a good leg to serve as a control to rule out simple deconditioning.]

Your results will depend on both your body (how much room for improvement is there) and your rehab team (do they know what they are doing.)

Professionals are helpful when a)you need ideas on how to do the rehab or b) you need specialized equipment/assistance to carry it out. Professional evaluation can also help you see and understand problems you might not be able to detect on your own. [My PT was good for the ideas and evaluation departments. But I took it from there, because the actual program for me is very low tech and do-it-yourself.]

Professional help can also be good for getting very targeted in your efforts.

That said, you are the one inside your body, and I've also experienced professional 'help' that did more harm than good. So it can go both ways.

You really have to take charge and take responsibility. You hire people to work for you on this project. Ditch the lousy ones ASAP, and with luck the better ones will work their way out of a job.

Jen.

Thank you Jennifer.

Actually, I have "fired" my old PT and I am seeing a new one on Monday. I am quite negative because of some leaflets about spasticity that have come to my hands. They even mention that it can be helpful to assist in transferring to/from wheelchair!!!!

Would we need a wheelchair if we had no spasticity?

They talk about wonderful treatments! Why treat spasticity if it is helpful? And why don't these treatments really work?

I think I have found new toilet paper here...

sou(r)

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Two of the greatest sucess storys I know of involved physical thearapy. Both involved a lot weight training, as a matter of fact. One story, that I heard second hand from a friend, was about his friend from high school, who went from a wheelchair, to walikng unassisted. I was told that he did it with "A lot of weight lifting and a lot of weed!"

The other sucess story is of a friend of mine, we go to length discussing it on an earlier thread:
http://www.thisisms.com/ftopic-9489-0-d ... rasc-.html

Hope this helps!

LOL, sou.

Spasticity: Friend or Foe?

Good luck with that, eh.

Jen.