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Just ten or twenty years ago, it was common for ALS patients to experience rapid weight loss and muscle atrophy soon after diagnosis. I remember when ALS Clinics urged patients to gain extra weight by eating “whatever you want.” Now, it seems that more and more ALS patients are maintaining a healthy weight through good nutrition and exercise.
My experience was that of being “athletic slim” prior to diagnosis; I watched my calories and exercised diligently. Following diagnosis, I relaxed my dietary constraints – – ate healthy food and satisfied my growing appetite – – I gained only ten pounds and have leveled out at that weight for the past ten years. My doctor isn’t concerned.
Have you lost (or gained weight) since your diagnosis? What advice have you received from your medical team?
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I can’t stand up to be weighed anymore, not sure how they monitor your weight when you are stuck in a heavy power chair. Last time I could stand (last summer) I had lost @ 45 pounds, down to 96 from about 140. I eat anything I want, ice cream for dinner, whatever appeals. I eat whenever I’m hungry. Not sure why I’ve lost so much.
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I have lost five pounds, but that puts me at my lifelong weight. I eat what I want to with no changes in chewing and swallowing, but my appetite is reduced. I was just over my old weight from lack of activities I did up to two years ago such as gardening, hauling water buckets, pushing a wheelbarrow in the summer, and shoveling snow in the winter. I have lost muscle mass in the one leg that is affected by my ALS that has had symptoms for one year, the time I was on the merry go round of wrong diagnoses . I was diagnosed with ALS one month ago.
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Dorothy – – At my ALS Clinic, they weigh patients on a large, adapted scale. I can step (roll) on with my rollator, my weight is recorded. Later, when I’m sitting…they weigh my rollator. Simple subtraction gives my body weight.
This also done with patients in power chairs. They remain in the chair, are weighed and…the nurse uses the manufacturer’s stated weight to do the calculation.
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Suzanne, it’s good that you are continuing to eat healthy foods. Are you able to do daily exercise for your legs?
I had initial weakness in my right leg; it felt like I had 2 different bodies (right and left side!). So, I treated them differently: for example, doing 10 seated leg extensions with my left leg… and only managing 4-5 with the right. But, I continued to do them. Overtime, I did see increase endurance on the right and can now do 10 (slowly).
Muscle atrophy, I believe is a “downstream” or side-effect of ALS (lack of signaling to neurons from brain to muscle) and we can continue to maintain a level of muscle health by intentional movement. Either you moving or PT assist. If you want some easy example exercises, I’d be happy to list them for you 🙂
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I do stretching daily, trying to get to where I used to go. I got out of the habit a year ago when ALS symptoms started with cramping all over while trying to stretch. My left leg (just above my knee, I just noticed) and all below my knee is atrophied and my foot does not move at all, and the blood vessels don’t work either, meaning daily compression socks. I have foot drop in both feet, the right foot from a 40-year-old inversion ankle injury. I now have a rowing machine to use while I can.
Can an ALS person train the brain to balance on the affected foot, like my very first PT told me? I have no strength to stand and balance only on my left leg. I do move the foot with my hands for ROM.
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I’ve gained about 20 pounds. I don’t eat junk foods and don’t drink, except for black coffee, Glucerna (2x day- I’m not diabetic), water, and cocoa using 2% milk.
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Suzanne – – I think using your rowing machine on a regular basis would be good. It is safe, seated exercise – – yet, the motion involves your whole body. Plus, pushing with your weak side engages those muscles (through passive movement) and is helpful for your brain-body connection. Rowing is also good for maintaining upper body strength 🙂
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I stayed at my prediagnosis weight for about a year. I really did nothing special for eating habits. The health professionals told me the same old “don’t lose weight”. After a year I decided to lose some weight to get to what I felt was a more comfortable weight. I went from 225 to about 208. Basically just watching my diet is all. This isn’t bad for my 6 ft frame. I’ve held this for about 8 months no special diet. I have little swallowing issues so far.
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Went from 165 to 140 in the ~6mo prior to Dx, another 5 lb in the 2 mo since Dx. Can’t stand up to weigh myself any more, so any future weights will be approximations. Riluzole ruined my appetite, but after stopping that, I’m back to eating whatever I want. Mainly a liquid, high-energy, high-fat, high-protein regimen, since solid food isn’t appealing. I feel great, but I look like I just got out of Auschwitz.
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