Physio will help your tendons and ligaments stay supple. Range of motion exercises were taught to us by a physio therapist and they were done every day. I think that it helped out a lot. It's not going to bring back function that is lost, but will help with what is remaining. I'm shocked that a neurologist would say something like that. If you need a good neurologist who has lots of ALS experience, Neil Cashman moved to Vancouver from Toronto this past summer... he is one of the best.
frankly, most doctors think this is a hopeless and there fore helpless disease. listen to your body. it will tell you when you've has enough exercise. and yes, this is a degenerative disease, but there's also the use it or lose it. so keep as much as you can going for as long as you can.
if you stimulate muscles and nerves there is a better chance they will listen to you longer.
I agree with the theory of use it or lose it. We practised full range of motion excerises with Henry and as TBear said, kept him limber and kept his tendons and muscles a lot looser, which in the long run keeps some of the pain away. Henry swan and did deep knee bends and rode the stationary bike almost up until a year before he died. Even then he did work out his legs and arms with help of course, and he felt much better than doing nothing at all. I cannot believe that a neuro would say such trash. Shame on him! Ultimaltely, you do what feels good to you and continue to do it until you can't. Keeping yourself fit even with als is important. Obviouisly, I am not saying run a marathon, but if you feel that you could, then do it. You all will know your limits and that is all that matters. Keep on keepin on......
Yes indeed. I find it odd that a neuro would say such things. The physio therapist (for range of motion exercises) was referred by the neurologists at our ALS clinic. Clearly not all of them think it's a waste of time.
Either way, Ruby, find out how to do range of motion exercises... they will help.
Thanks all for your replies re physio. I think you are right.
TBear - I do go to the ALS Clinic in Vancouver. I see a Dr. Charles Krieger who was standing in for Dr. Cashman until he arrived and now he works with Dr. Cashman.
Another question for you all - do you find you are saying the wrong words but realizing it immediately? Such as Pick up the yellow pot instead of Pick up the blue pot. Maybe it is just me. Several things happen and I do not know if it is PLS, old age or just me.
You will soon find out that all of us here have a knack of saying all of the wrong things at the wrong time! Its seems that you have to have this trait to belong to this crazy group...ha... Anyway, don't worry about it. Sometimes we think one thing, and say another. I think you are doing fine here, and thats all that matters. Take care and stay strong.
I only have experience with als, unfortunately. I am not familiar with pls. Maybe you could inform us here. My husband had als for 8 years, and there is not one thing that we don't really know about it. Live and learn I guess. Those 8 years were some of the happiest of our lives. Yes, we laughed and had good times mixed in with the sad times too. However, we choose to make the best of it, and we did. I do not regret one single minute of anything that we did or the money we spent trying to prolong or find a cure for Henry. It wes exhausting at times but, still I would not change a thing. I would do it all over again. Thats what love is all about. I hope that you have that in your life as well. It sure makes this rocky road a lot more easier to drive. What are your symptoms and please inform me more about pls. thanks....
I am going to try to explain what I think the difference is between ALS and PLS. I might be wrong, and stand to be corrected. I have been reading some websites, and think I have learned this.
First of all, I was confused when people talked about "upper motor neurons" involved and "lower motor neurons" involved. I took that to mean upper limbs (arms and hands) and lower limbs (legs and feet). As everyone else probably already knows, that is not what it means. Upper motor neurons mean neurons in the brain and lower motor neruons means neurons in the spinal cord.
In ALS both the upper and lower motor neurons are affected. That is, both those in the brain and those in the spinal cord.
In PLS, however, only the upper motor neurons are affected. PLS has many of the symptoms of ALS, loss of strength in arms and legs, it can also affect the tongue and mouth. Twitching, cramping can also occur, and all the other wonderful things that go with ALS. But, with PLS the spinal motor neurons are not effected, and there is no muscle wasting. That is the big difference because, since there is no muscle wasting throughout the body, the respiratory system is not affected.
Websites that I looked at say PLS is not fatal, but degeneration takes place over a number of years and patients may need wheelchairs, etc.
I hope I have not done a disservice by posting this, I read several websites which I found by Googling "Primary Lateral Sclerosis". I was curious and wanted to know the difference. Hope I helped someone, and if this information is inaccurate, someone will tell me I am sure!LOL
I am not a professor, a doctor, or even a nurse, just a PALS!
P.L.S. is also not fatal.
Why I am confusing the neurologists is that my right leg atrophied within the first six months of any symptons. Beginning my second year, I was diagnosed with A.L.S. and then three months later, after another Electromyogram, he said no as I was not progressing fast enough. That is why I feel I am in limbo. I understand now that most neurologists do not diagnose P.L.S. until you have gone 5 or more years. I have now gone three years.
I do have a husband but I don't think we have the strong love that you had. I am sorry for your loss.
My symtoms - right leg only, tripping, atrophy, like a dead post.
- loosing my balance
- right arm does not swing when I walk
- systoms started 3 years ago
When I asked about saying the wrong thing, I enjoyed your answer.
The reason I asked tho, we had a foster son who did not take his medication for epilepsy and at times said some weird things. He eventually had a seisure and died.
I must agree with Al, or Carol - the old use it, or lose it saying is even more applicable for PLSers .
I have even thought about "Aqua-fit" programmes at the local YMCA - I tried the progamme at a local club in Windsor, Ontario, where I am from !
I found some minor success - but , I found that, although limited, I still found that I got SOME slight success; has anybody found some success with a similar programme ?
Deep water programmes are no success because of the inability to balance or use the needed voluntary muscles !
It is important to use a waist band flotation device, at least while in the pool and use a "buddy" who wouldn't mind accompanying you to the water swimming pool; it's not a good idea to use a local swimming pool, no matter how much $$ it saves :wink:
Another thing to think about is your breathing. The summer before I got my Bipap I noticed that just standing in neck high water made it difficult to breathe. I am now at the point a year and a half later that I can't even sit in a hot tub. It's just too hard to breathe. So be careful and don't just think it is the exercise that is making you out of breath.
Hi Ruby ben,
Physio is an integral part of total ALS care in the clinic I see my neurologist at in Melbourne, Australia.
I have also been to see a private physio who recommended Pilates exercises for me. I have been doing this once a week for about 4 months and feel it has been beneficial to me, it strengthens your core muscles which helps with limbs as well.