Advice on elliptical machines for home

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SarahC

New member
Joined
Nov 27, 2012
Messages
3
Reason
PALS
Diagnosis
06/2012
Country
US
State
CA
City
San Francisco
After a year of wondering, I was diagnosed with ALS this summer. I am so far only showing signs of lower motor neuron disease, and only my legs are affected. Prior to this, I was a runner, and I am really missing my cardio workouts. I joined a gym, but it's just too hard to get there and get around, even using a cane. Not fun. So I'm wondering if anyone has advice on a good elliptical trainer for the home. I want to use the muscles I have while I still have them, and stay strong where I can. Right now, I'm barely doing anything: driving everywhere, and mainly using my energy to keep up with my 2-year-old daughter (who is both faster and stronger than me. Ouch.) But I could probably use the elliptical for about 20 minutes at a time, on a low incline and resistance. Would love to be doing this every day.

Looking for mid to high end, but open to hearing about absolutely anything that has worked for others. Thanks for any input!
 
I can't recommend a specific elliptical for you but would like to issue a word of caution about your plan. I too lived a very active athletic lifestyle before my diagnosis. After diagnosis I continued on at the gym with regular work outs determined not to lose the muscle that I had left. Although my initial difficulties included weakness in the legs, I continued on with cardio & found that a 20 minute workout would leave my legs unable to move. I would then go on and get an upper body workout. My legs did not last long with the training & I currently unable to stand or walk. Although I can't prove it I do think that continuing the lower body workouts definately used up what motor neurons I had left . I still had muscle in the legs but no motor neuron connection to make anything move. I quit going to the gym & although my legs are totally useless now I still retain a fair amount of upper body strength. I sincerely believe that if I had continued on at the gym with the upper body workouts that would now be as useless as my legs. I now find that I can get enough exercise just by trying to transfer, shower, get on the commode, etc. Chasing that 2 year old around might be all the exercise that you need right now.
 
Talk to a GOOD ALS clinic doctor. That type of exercise is usually not recommended. Also, the reality is that with time, you will no longer be able to use an eliptical machine. A better choice might be a recumbent bike. You can work the muscles even after deterioration occurs. My husband was able to use his recumbent bike by reducing the tension for a very long time. I'm not sure that this was really such a good idea. I agree with hn7609. It would probably have been better NOT to work out. There is some evidence that it actually speeds up the progression of the disease.
 
My wife passed away from ALS in August 2012. The year before she became a quad, she insisted on me carrying her,literally, to physical therapy twice a week. I would notice that when we got back home, she would be spent physically, and needed to rest. I did not think that physical .therapy was doing her any good, but when she seemed to get worse afterwards, I was convinced it wasn't. She told me later that she was tired from the exercises more mentally than physically, because she had to mentally will her legs to move. In the end, nothing helped. I am so sorry that you have this disease. Please stay on the forum for all the information that you need. I also found much more help from the forum than from person to person with medical personnel Remember, ALS is an orphan disease that affects very few people in the general population. Most physicians do not know a lot about it. The people and caregivers that are confronted with it do. God bless you and I hope it reverses itself, as there have been some to have such a reversal.
 
Thanks all. Appreciate the wisdom.
 
Sarah, PT and OT helped my husband tremendously. The therapists helped isolate the muscles that were still working, and they taught him to use those muscles to help him in daily activities. Both therapists were very careful not to overwork him, though. We were so fortunate to have therapists that did quite a bit of research on ALS before they worked with him and while they were working with him. Before we started with them, Terry would have me take him to the gym, and I would have to literally put him on machines. I have no doubt that this strenuous activity before his diagnosis led to his quick progression.
 
Thanks Missy. It's odd--my physical therapist, who is an ALS specialist at UCSF, is the one telling me to get on the elliptical. He seems to think I'm strong enough and that I need to be using my muscles so that the ones that work don't wither. But I'm hearing you and the other posters and I do appreciate your perspective. I'll speak to my doctor about this again before making any decisions. I'm so sorry that you lost your husband to this disease. Hangingon1, equally sorry that you lost your wife. And hn7609, definitely sorry that you have the diagnosis. I hope you are staying positive. I am trying. Best, Sarah
 
Sarah,

I was a runner too, so I sympathize with wanting some form of exercise. You've heard from people with a lot more knowledge and experience than me. But what I have found is that if I'm out to a store or restaurant one day, I am "stronger" the next day. I can walk so far with a cane, and walking seems to be getting harder, but I can't sort out loss of function due to denervation from loss due to disuse. So I try to stay as active as possible. I'm strongest in the middle of the day when I have some activity behind me. I focus on that. I've noticed that my tired muscles twitch more when relaxed, so that's the down-side of physical activity.


Bob
 
Excercise is not a good Idea for people with ALS as you wont build muscle you will only lose it. Stretching is great to help fight atrophy though w/ a knowledgabe therapist. My son has ALS was Dx at the age of 21. My sister inlaw has MD she began useing a scooter or chair to get around in her early stages she callls it saving her legs. So if she knows she wants to go out in the evening for somthing fun she uses a scooter or chair during the day to do shopping etc. thus saving her leg strength for more meaningful activities.
 
My husband used a PWC when going out long before he stopped walking. This allowed him to have quality time out without getting tired. He saved walking for navigating the house. With the help of the OT and PT, he learned to use diminishing muscles to prolong his ability to stand, walk and transfer long after the doctors told him he was finished with walking.
 
Sorry my son was Dx at 22 have a hard time keeping track of time & events anymore
 
Interesting thoughts regarding exercise and its effects on ALS patients. I would like to share my personal observation. I have had the good fortune of being involved in the dexpramipexole phase III trials for the past 16 months. The study includes monthly blood draws required for detailed analysis. One component of the lab work involves a test for C K levels (Creatine Kinase), explained in layman terms as far as I understand is a measurement for muscle condition. It is very common for ALS patients to have elevated C K levels due to muscle loss/weakening and my C K levels run slightly more than twice the level of a healthy person. The point I am getting to is that lab work done the day following a round of golf came back with C K levels more that three times my normal elevated level. Perhaps this was an isolated incident, but I certainly have curtailed the amount of golf I play. I now limit my exercise program to stretching and using the recumbent bike at a fairly low level and my C K measurement continues to measure at slightly more than twice the level of healthy individuals. That being said, however, every ALS patient reacts and progresses differently from others.
 
Very, very interesting Frankb. I would love to see some more info on that. Could be very useful.
 
the important thing about exercise you must listen to your body. when diagnosed feb/10 i peaked at 50-70 pounds upper body, 70-130 pounds lower body. i immediately started backing off, weight and repetitions. now its upper body 10 lbs, 15 reps, lower body 20-50, 20 reps you cannot build muscle or recover (maybe when ck-357 is approved things might change) so i now call this range of motion with a little weight
still walk, talk, eat, breath (fvc 93) drive on my own. i still believe there are things you can do to extent life expectancy.
 
pearshoot,

What is ck 357?

Bob

<pearshoot wrote: the important thing about exercise you must listen to your body. when diagnosed feb/10 i peaked at 50-70 pounds upper body, 70-130 pounds lower body. i immediately started backing off, weight and repetitions. now its upper body 10 lbs, 15 reps, lower body 20-50, 20 reps you cannot build muscle or recover (maybe when ck-357 is approved things might change) so i now call this range of motion with a little weight
still walk, talk, eat, breath (fvc 93) drive on my own. i still believe there are things you can do to extent life expectancy.>
 
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