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rubato

Member
Joined
Jan 15, 2016
Messages
11
Reason
DX UMND/PLS
Diagnosis
07/2016
Country
US
State
VA
City
Reston
Hello,

This is my first post. I was recently diagnosed with PLS with right spastic hemiparesis. I take Flexeril and Gabapentin, see a NeuroPT who gives me exercises, swim nearly every day, and have started taking easy yoga classes. I want to do everything I can to get in me the best shape possible for this long downhill journey.

Has anyone had success (or no success) with acupuncture or TENS (transcutaneous electrical nerve stimulation) therapy?

What else has helped you that you could pass along to me?

Thanks much,
Julie

P.S. I've got a terrible case of tennis elbow from gripping my cane too tightly. Anyone got any help for that besides anti-inflammatory drugs (Aleve/ibuprofen) and ice.
 
Hi Julie,

Hope you find lots of helpful info here.

Never tried TENS but I did try 10 sessions of acupuncture this past spring and did not think the results were significant enough to continue. You have a different presentation than I had though, so maybe it's worth a try. If you can afford it it can't hurt, so why not. I was lucky that my insurance covered 50%. However, be prepared for some discomfort--lots of needles go into the scalp, and some in the limbs.

Re: tennis elbow, I also had/have overuse pains in elbows and shoulders, but as soon as I started using better 'aides' the pain lessened. For example, my shoulders calmed down after getting a stair lift because I no longer had to death grip the rail going up and down. I started using a rolling walking after my balance and spasticity got worse. I used a walking pole for less than a year before it felt unsafe.

Spasticity does such weird things to the body that it's hard to keep on top of it all, but swimming is great, and so is stretching. Stay positive--that might be the most helpful of anything.

Kathy
 
Hi Kathy,

Thanks for the reply. I do know about acupuncture needles - I've had three series of acupuncture treatments over the course of my life and I felt all were successful (sciatica, tendinitis, and leutel phase defect). I've got a TENS unit and tried it daily for about 2 months and quit when I didn't think it was helping. Though with TENS it is important where you place the pads. My elbow is a little better today, but I'm still not back to my regular activities. Can't type too much and can't play the cello. I'm trying not to have a hard grip on the cane.

Julie
 
My PT does TENS, deep muscle massage and some exercises that all seem to help postpone my symptoms. It is still a gradual decline, but I am trying to do as much as I can. PT also did acupuncture 9 or 10 times and didn't help so he stopped. I take Zanaflex at night to help with the cramping. I can't take it during the day as it makes me extremely tired.

I did buy a Segway so that I can still get around.

Take care
 
Julie, when one of my hips aches or my back my therapist will use the TENS on the area. He leaves it on for about 20 minutes. It really does ease the aches. If your therapist has one, ask her/him to use it on you and see if it helps. Bill
 
Bill,
I have my own TENS unit and have tried when I didn't have pain and it didn't seem to make a difference. I know that it helps with pain - by short signaling the pain message to the brain. I was wondering if it would help with the stiffness.

As an update - my NeruoPT put Kineso Tape on my elbow and I have had no pain since the tape has been applied and I'm back to my regular activities. The exercises from the NeuroPT and yoga have had a significant impact on my ability to walk. I'm walking very normally and without a cane most of the time.

Julie
 
Hi Julie
I have a weird kind of UMND, and use a walking stick.

My dad had a total knee replacement, and when he finished with his walking stick, I knicked it from him. (What do you expect, Mike, I am a 'convict' after all!!)

The stick has a bit that goes around my upper arm and the bit that you hold onto sticks out the front not the back of the actual stick.

Man I'm bad at this, I'll see if I can find a picture! Sorry can't get the magic happening today, but if you search crutches you will see what I mean.

I find it much easier on my wrist and elbow than other types I've tried.
 
Janelle- Believe it or not, it's called a Canadian Crutch. No idea why, but there you go!
 
Mike,
I am shifting from using a cane to a traditional hiking pole - the wrist strap is much easier on the elbow. I just googled the Canadian Crutch and will look into using them if/when my walking gets worse again. For right now, I'm only using the traditional hiking pole when I'm walking up and down grades. On level ground I'm doing fine without any assistance.
Julie
P.S. Thanks Janelle for the proper terminology.
 
I just started acupuncture treatments. Had my first treatment on Thursday, second today and third on Monday. To early to say if it is helping the spasticity.
 
Not to rain on anyone's parade....but I think acupuncture is no more than "the power of positive thinking". It is said to be an almighty cure all, but really is not invasive enough to change anything.

I base my opinion on personal experience, and those of people I know that have also used it for anything from weight loss to curing paralysis. The needles only go about 1/16 of an inch into the skin and rarely even draw blood, and is for the most part is painless.

About 20 years ago I bought into acupuncture for weight loss. I had success but really thought it was the 300 bucks it cost. I had to make it work because I would have been sick about the cost with no results. I was as hungry as ever, wanted to hide in my closet and eat Twinkies.....but I starved myself to have any success.

I tried it about 10 years ago for a back injury, and got nothing from it, other than a dent in my wallet.

Lastly...my son is a paraplegic from an auto accident. He had acupuncture for several months and got absolutely nothing from it. He was convinced by a "reputable" practitioner that he could improve his paralysis. My son spent a fortune on acupuncture that produced nothing.

Many things in life are too good to be true, and this is a prime example....The power of positive thinking is the only good result that comes from acupuncture.
 
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I think there is a place for acupuncture, but my Chris tried it to relieve pain from spasticity and had zero effect.

I hope you have better luck rubato, please do keep us updated!
 
Thanks all for your input. I understand the positive reaction a placebos can have. I have had success with acupuncture three times in my life - sciatica in the 1980's, wrist tendinitis in the 1990's, and leutal phase defect in the 2000's. All by different practitioners with different techniques.

bigmark - not all acupuncture needles go in only 1/16 of an inch, when I was being treated for sciatica I had needles inserted more than one inch.
 
Thanks all for your input. I understand the positive reaction a placebos can have. I have had success with acupuncture three times in my life - sciatica in the 1980's, wrist tendinitis in the 1990's, and leutal phase defect in the 2000's. All by different practitioners with different techniques.

bigmark - not all acupuncture needles go in only 1/16 of an inch, when I was being treated for sciatica I had needles inserted more than one inch.

Just going on personal experience and those of people I know. I had sciatica 10 years ago and the needles were exactly as I said.

This being said.....we all have opinions based on our individual experience and knowledge.

Good luck with your treatments, hope it is a positive experience for you Mr. Robato.
Hey wasn't there a song in the 80ies called "Mr. Robato"??
 
Good luck with your treatments, hope it is a positive experience for you Mr. Robato.
Hey wasn't there a song in the 80ies called "Mr. Robato"??

The pop song from the 80's was Mr. Roboto. I on the other hand am a female and Rubato is a musical term referring to expressive and rhythmic freedom. I'm a cellist!

https://www.youtube.com/watch?v=3cShYbLkhBc

I've had four acupuncture treatments and I can't tell that it is doing anything for the spasticity, but it has done amazing job on the tendinitis in my left elbow caused from gripping my cane too tightly.
 
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