April 24, 2019 at 9:54 am #11645Diana BellandParticipant
My ALS Clinic staff does not include a nutritionist, and I have some questions about what types of foods I should be eating and how often. I have always followed a Mediterranean type diet with fish, chicken, lots of fruits and vegetables, beans, yogurt, low fat cottage cheese, healthy grains like oatmeal, quinoa, etc. and I use olive oil for cooking and for salads.
I’m trying to keep my protein intake high but I don’t have much appetite. I sometimes don’t eat breakfast until very late morning. I do try to drink two bottles of Boost, a high protein drink, about three times a day between meals.
I would love to hear from others what types of food plans you are following to keep weight on and maintain muscle.
April 24, 2019 at 7:50 pm #11670
Diana, I think any good nutritionist would recommend exactly the eating plan that you follow. Normal, healthy, a variety of foods and regular meals. You’ve checked all the boxes!
With ALS, I don’t think there’s any need to put added strain on our bodies by going on a wacky diet (usually found on the internet!) or, consuming mega-doses of vitamins and/or supplements.
The main concern is weight loss as a result of losing the ability chew or swallow food or drink. Quick steps need to be taken to have a PEG inserted to be able to rely on liquid nutrition.
For 11 years I ate a healthy lacto-ovo (dairy & eggs) vegetarian diet up to the day I was diagnosed with ALS. My neurologist told me to begin eating meat – – I immediately added animal protein. And still eat meat/fish/fowl – – with no ill effects. 🙂
April 25, 2019 at 3:21 pm #11681Diana BellandParticipant
Thank you, Dagmar!
I, too, have eaten mostly a vegetarian diet, although I do try to eat salmon regularly. Since my ALS diagnosis, I have been trying to eat animal protein every day. I’m concerned that I’ve had so much muscle atrophy in my right calf especially. I began noticing the right calf muscle change last summer (2018) but, of course, no one had any inkling that I had ALS. So, my PT told me to keep walking and continue with ankle/toe raises.
I wonder if it’s possible to slow down muscle atrophy in the calf muscles with the right exercise and sufficient protein intake? I’ve noticed that your legs look very strong and muscular in your chair exercise and bounce videos. Maybe that’s due to your years of dance training? By the way, I LOVED watching your dance videos on Youtube!!! So glad you posted them along with your earlier chair exercise videos. They are really helpful and enjoyable to do.
April 26, 2019 at 11:53 am #11697
Diana, thank you for your compliments on my dance videos 🙂 I am so glad I have them; to mark what my body used to do! (I still dance in my mind and in my heart!)
I haven’t experienced much muscle atrophy yet – – although I notice small visible areas in my feet and have a strange “missing” muscle along my left waist, which when I’m tired and sitting, causes me to lean leftward.
I am only relying on what I know and learned about basic muscle anatomy and physiology. Movement of the muscle is essential – – for blood circulation, stretching the muscle fibers & associated ligament/tendons, stimulation of nerve endings and…to retain brain/muscle memory of that particular movement.
I try to initiate the movement from my brain. But in the case of my right ankle, I manually do the movements.
As far as food contributing to muscle health: it’s very subtle. Good nutrition is the foundation. We just can’t consume something and hope it goes directly to the muscle and repairs or builds it. Protein helps muscles repair and renew fibers, carbs give the muscles energy to move.
I keep the attitude that I am in “maintenance mode” – – happy to retain what I have, and diligent not to lose more than what has already happened. I know it is a slow creep toward decline…. but boy, it will be very, very slow if I can help it! 😉 🙂
Ankle circles, ankle/toe raises, foot massage – – all good!
May 2, 2019 at 10:53 am #11795John RussellParticipant
Since my diagnosis I have eaten everything that can’t eat me first. I’ve always hunted and still eat venison. I have not experienced weight loss yet.
Not surprised Dagmar doesn’t go for supplements. I have followed the myriad suggestions and am currently gulping tumaric, resveritol, magnesium, zinc, B12, co Q 10, fish oil, & vit. D. Also have gagged on coconut oil off &on. I think I’m wasting time & $. I do think fats & oils are likely good. I use olive oil by also slather butter. Anyway, don’t think my arteries will get me at this point.
May 3, 2019 at 4:26 pm #11813
John, as far as vitamins and supplements… my personal rule is: know “why” you are taking them and “what” nutrient deficiency they are supposed to correct in my body. So far for me, none have passed the rule/test 🙂
For a little light-hearted reading on the topic: Auntie A. Ellis Gets Cured.
January 11, 2021 at 6:46 am #17433Kathy stitzParticipant
I have been told that it’s important to try to not lose weight because it makes your body weaker. I have to force myself to eat as much as possible and am not always successful in doing so. I tend to eat more junk food than I should. I guess this is good in a way to try to keep the weight on because junk food has a lot of calories but for healthy eating and getting the right nutrients for the body it isn’t good. I don’t take any vitamins or supplements.
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