July 1, 2020 at 4:17 am #15726Martin LöbbingParticipant
I am new in the forum, I am german, therefore is my english not so good.
I was told last year in november, that I am an ALS-patient. The first signs I noticed nearly a year earlier. My left arm went weaker. During the physiotherapy I found out, that doing muscle training at pieces of apparatus suits me. Because of corona the gym of my physiotherapist was closed until now. But meanwhile training is possible and I started with a 45-minutes-program for all muscles, which I will do 2 times a week.
Does anyone has experience with such sort of training? Is there something, which I have to regard?
My doctor says, if I like it I can o it, but I should not expect, that the training would have any effect on my ALS.
OK, that is enough for today. Best wishes to all of You
July 1, 2020 at 12:56 pm #15728Dagmar MunnKeymaster
Martin, your doctor is correct that exercise will not have an effect on your ALS, although – – it has been shown in some recent studies, to help slow down the progression of ALS symptoms. Plus, exercise is needed for your unaffected muscle. The affected muscles will benefit from gentle, range of motion exercise. In addition, attention needs to be paid to cardio (breathing and heart health).
I follow a pattern of daily exercise: 1-1/2 hrs per day. But – – it is divided up into 2 half-hour and 2 fifteen minute sessions. I exercise at home…no equipment; I use the floor, chairs and my bed. For cardio I use a small rebounder (but a recumbent bike would do as well).
Keep it up! You will need to adjust/adapt over time. But you will be thankful later on. I have been doing this for the past 10 years now.
July 11, 2020 at 11:41 am #15817Marianne OpillaParticipant
I believe in exercise for ALS. As Dagmar says, we have unaffected muscles that need to stay strong, plus the mental benefits of exercise.
I do yoga 2X weekly and, now that my gym is open again, will do free and machine weights. I also am still able to do a SPNN (cycle) class once weekly. The trick is to figure out how much exercise is beneficial and not to over do and become too fatigued.
July 15, 2020 at 3:15 am #15870Martin LöbbingParticipant
Thank You Dagmar and Marianne for Your replies. The difficulty is to learn, what intension of exercises is good for oneself. I think, we must learn to hear, what our bodies say, my body says,
I like moving. But what I learn from You is, that we can do a lot of exercises, if it feels good. It is not necessary, to rest a whole day after a visit in the gym.
Best wishes for all
July 22, 2020 at 10:53 am #15931Veronika WuytsParticipant
my husband had a daily exercise program from his physiotherapist, thinking he had a viral shoulder problem. it turned out to be a MND. He started physio in the hospital twice a week and stopped the daily exercises, labeled as redundant. When I look back now, it seems that in these 6 weeks the speed of his loss of mussle power in his arms go together with the stop of the daily exercises. So we started again this week with the daily regime. Hopefully this helps not sliding away as fast as it seems to happen now. Monday we have a new EMG, the 2nd after we discovered on March 3 there was an issue. He was diagnosed with MND (not clear yet if it is ALS, FOSMN or Man in the Barrel)end of april.
July 23, 2020 at 5:03 pm #15936Chuck KroegerParticipant
Another view on exercise. I was diagnosed 14 months ago with symptoms showing up 2 years ago. – my doctor and all of the staff that I see during clinic told me to conserve energy rather than exercise. I do some stretches with my legs and back which are about the only muscles I have left. Arms and hands are very weak and so I avoid using them anymore than I have to. Before I was diagnosed with ALS I was put on rigid physical therapy routine which resulted in considerable loss of strength. ALS is so very different for individuals it is difficult to know what is best and what to expect next
July 24, 2020 at 10:25 am #15939Barb OGParticipant
I was diagnosed in March of 2018, started in my feet, I am now in a wheelchair. No other real symtoms. I highly recommend water walking/arobics. It makes me feel normal and provides a great workout all around. I do it every other day and exercise and stretch the other days depending on how i feel. I have my “weak” days and I have learned to let my body rest, which I was never good at before…..
God bless you in your journey…
July 24, 2020 at 4:51 pm #15943Dagmar MunnKeymaster
Chuck you are right – – ALS is so different for each of us. And yes, when you only have limited muscle use, it is prudent to conserve your energy.
Although, 10 years of published research shows that gentle exercises are beneficial for ALS patients who still have adequate muscle movement. For me, I believe that exercise has helped me retain muscle strength, size, and mobility.
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