Muscle Stimulator

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tomleewa

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Hi,

Have anyone tried this machine to stimulate the muscles? I bought it couple weeks ago and have currently used it for my legs. I did some searches for a word "Stimulator" in this forum and found some old threads back in year 2012. According to PALS, these machines didn't help to keep the muscles dying.

Please correct me if I am wrong. I was told the brain couldn't send signal to the muscles because the cells were dying, so the muscles didn't function properly and wasted out. I thought if that's the case, I can use this machine to stimulate the muscles and keep the muscles being operated, then the muscles wouldn't waist out.

I have spent thousands of dollars trying Deanna Prococol, Lunsina & acuputure. Nothing worked. I just want to look for something to give myself a HOPE.

Thanks
Tom
 

GregK

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Folks have discussed this before and have tried this using TENS machines.
The consensus was that there was too little stimulation to be of benefit.
 

KW1234

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I find that between my pt exercises and aqua therapy that what muscles I have left are strong and keeping me going. Sure I continue to progress but I really think the stretching, range of motion and just moving my legs is keeping them functional. I think there is a delicate balance we have to find for ourselves.
 

Atsugi

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Tom, let me give my own view about hope.
Everyone needs hope, even those who don't have disease.

When you hope for something that can't happen, you're not really hoping, you're just fantasizing.

When my wife was diagnosed and I found out how the disease works, I realized that my mission was to ensure my wife had the most pain-free and fear-free life in the months she had remaining. That was my hope, and I think it was my wife's hope as well.

It came true. Her remaining time, and also the ending time, were the best we could hope for.

Take it one day at a time. Wishing you the best.
 

lgelb

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Tom, given what happened with the DPS, there's reason to believe that sparking a dying battery, esp. at the wrong time (and we're not sure when that is since we don't have a handle on disease progression) only hastens its end. TENS doesn't output a lot of voltage but we don't know what the safe zone is.

As others note, range of motion, aquatherapy and passive/active stretching while protecting joints have merit in terms of helping you better use what remains in terms of musculature, in comfort. There is no evidence that TENS does the same.

I feel sad that you have spent thousands that you evidently regret on potential "cures." May I respectfully suggest that you focus on interventions proven to add quality of life, such as what we have talked about here, diet, hydration, BiPAP when indicated, doing what you need to do to have high-quality sleep, e.g. hospital bed/overlay, social interaction, pets, travel while you can, whatever will build memories but also advance the life that remains.

Best,
Laurie
 

ehd42

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Hi Tom,

I hear and agree with the knowledge and wisdom expressed in Laurie’s post and I very much appreciate her clarity and reasoning. In dealing with my ever-changing symptoms I have learned to focus on things that will most likely help me to adapt and adjust to the disease in a way that helps me maintain the best quality of life that is still possible within the constraints of this illness. I base my approach on what I learn from studying what is known about the disease, learning from others, and getting support from my knowledgeable and experienced ALS clinic in Philadelphia. I continue to study ALS in an effort to do everything possible to maintain a good quality of life. At the same time I have avoided wasting hope, money and effort on various treatments that are unsupported by serious scientific clinical trials. So far, all of the ALS treatments recommended or offered for current use on the Internet appear to me to be raising false hopes once they are careful studied. I often find is scientifically unsupported treatment, recommendations, beliefs, anecdotal stories or scams promoted by individuals that appear to me to be either charlatans or scientific naïve.
Even though my symptoms are quite advanced, I take inspiration from people like Stephen Hawking who is exactly my age and just about completely paralyzed and yet he has managed to continue to write best-selling books, contribute to our understanding of the universe, and yet appears to be able to pursue a meaningful life even though his physical disability is so great.
It is my hope that I will also continue to be able to find ways to live with ALS and also maintain a meaningful life because I find that it is possible.

Best wishes

Eliot
 

KimT

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Hi Tom,

Hope is what keeps us moving forward. I have a slightly different way of looking at this disease and what I do from day to day. I believe that keeping my general health as good as possible, will lessen my suffering and make each day as good as it can be. For example, I found that I am sensitive to gluten. I avoid it because it makes me feel sluggish. Caffeine increases the twitches so I stay away from it. I'm a believer in taking Vitamin D, Vitamin B-12, Magnesium, and some other vitamins because they help with things like energy, general wellness and constipation. I've recently cut back on sugar to see if it has an impact.

I wish I had not followed Mayo Clinic's direction to gain weight. I put on 30 pounds and none of it was muscle. I know this goes against scientific studies and clinical recommendations to be slightly overweight but I think I was meant to weigh less because I have a small frame. I think the belly fat made it harder to breathe and definitely made me more uncomfortable. Everyone is different. When I tripped and sprained my ankle, the lack of exercise caused me to become more fatigued and depressed. I started going out in the sun and trying to move more and started feeling better. I will make sure I get plenty of sun for as long as I can when I am confined to a wheelchair. In the meantime I hope to try the pool, hot tub, and sauna again.

I also got repeat blood work to see if taking Zinc helped my free copper level come down. If so, I might give the Lunasin a couple months trial. If it doesn't work, it's a small price to pay. If it does help in some way, even if it just gives me more energy, it will be worth it.

I regularly check Dr. Bedlack's ALS Untangled site and ALSTDI to see if anyone is having success with something. I don't consider that false hope, I consider it something that I can do to make sure I don't miss anything.

My doctor has had tremendous success in treating progressive MS with a near-paleo diet. That was my motivation for cutting out processed food and sugar. If I don't feel better, I'll go back to my frozen Greek Yogurt afternoon fix. If I do feel better, I'll continue.

I do think there is a fine line between unrealistic hope and making the best out of a bad situation. I don't think it was unrealistic to try the Deanna Protocol, Lunasin or Acupuncture. Accpuncture helped me with migraine headaches when nothing else did. I may try it for my back pain. Lunasin has shown that it might help some and Vitamin B-12 has shown, by clinical trial in Japan, that it helped extend survival time. I was told at both Hopkins and Mayo that I could forget B-12 because I wasn't Japanese????

Laurie said something very important and that is doing the things you need to do to have a better quality of life including socialization, hydration, nutrition, etc. That is good advice.

Don't ever give up hope.
 

Firefighter58

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Hi Kim
I agree,with you, if you feel good and like what you are doing then go for it.
Al
 
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