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trfogey

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vlro1953,

If you are a patient at a multidisciplinary ALS clinic, ask them about their dietary and exercise recommendations. If you aren't a patient at a multidisciplinary ALS clinic, stop the weight loss plan and consider becoming a patient at an ALS clinic.
 

Green

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Another thing to temember is that the muscle needs to be active while they are being provided a good source of nutritionn and energy. Try to have a very godo source of protein just 1/2 an hour before a moderate physical activity. a good source of protein can be vegetarian like: hemp protein or whey protein isolate, which will also help you increase your glutathione levels which had been found to help ALS in some studies.

If you could have access to mother's milk that probably would be the best thing

whey protein isolate tries to be as close as possible that mother's milk according to this [
 
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hn7609

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This topic has me interested and there are somethings that I just don't understand. In my case I started this disease at an athletic 190 lbs. My progression was limb onset and has ravaged my lower body, affected my arms & hands while so far leaving my bulbar functions mostly unchanged at this moment in time I still eat like I did before my onset and because I spend my days on the recliner or wheelchair with little to no physical activity my weight has increased to 210. I have lost almost all of the muscle in my legs and have replaced it with fat on my belly. I am mostly unble to walk now and I think that part of the reason is because of the extra 20 pounds of fat that I currently carry around. I assume that as long as my bulbar function holds out that I will continue to grow fatter & more helpless untill I reach the point where my bulbar function is compromised and I can no longer eat enough to maintain weight.

With my inevitable falls my wife is already struggling to get me back to my feet, if I get any bigger there is no way that she will be able to assist me, she'll have to call the tow truck. Am I on a normal path packing on the pounds now only later to reach a plateau and then start the decline?
 

brooksea

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hn7609,

First of all, a pALS metabolism is faster than normal. Any energy expended, whatsoever, will lead to calories burned at a higher than normal rate. You need the fat, as it will be burned before muscle.

Second, you are correct regarding bulbar function. Once that starts declining, you will lose weight, as you will be unable to chew, swallow, etc... So if you have a lot of weight to spare, that is a good thing. You will need to consider a PEG when that happens.

Third, your wife needs to check into a lift to assist in getting you off the floor!
 

Ms. Pie

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Also, a peg should be gotten before breathing levels get too low from what I understand. Don't know what the lowest level for this is but I imagine some of the CALS do.
 

michelleRN

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hn7609, you have concerns that are somewhat parallel to ones I have when it comes to eating. I have a really slow progression, diagnosed in 2008, primarily upper extremity weakness, lowers only bad enough right now to nix plans for any Stairmaster antics or pushing a cart of groceries through a Walmart parking lot. No bulbar issues and last FVC was in the 90s. Each visit to my clinic I leave with an internal dilemma. My neuro remains positive that I am on, what I call, the 10+ years plan, slow yet steady. Then I have the dietician, who is really the only person I feel less than ambivalent about at clinic, reminding me to shovel in all the full-fat food I can handle. Well, I do that. And while it doesn't seem to be landing on my bones, I can't help but think it's likely landing on my arteries. I guess I wouldn't care if the odds of seeing ALS take me down in the next couple of years were larger than the odds of a hypertension-induced stroke or massive heart attack from poor diet choices in the next 10 if I continue on this path of no-holds-barred eating to try and add pounds that are just not happening. It's a double-edged sword really.

To counter it, I eat my regular diet - all the regular mayo and sour cream and whatever other non-light choices that I never skimped on prior to ALS, but I also don't allow myself to feel bad for enjoying plain celery, just because I'm weird like that. I like plain celery even though it lacks calories. I guess the point of this is to wonder how those with a slower than average progression handle these dietary recommendations for high caloric intake while still understanding there are other body systems to be taken into account and how those dietary choices may affect them in the long run.

I don't know what the answer is. I drink chocolate fudge Boost shakes for extra calories. They're pretty tasty and don't make me panic about an impending coronary.
 

vzandt

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hn7609....you sound just like my husband:) Boy I love him
 

ltbeauti

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Michelle rn
I am a slow progress or too and have opted for no PEG right now, my FVC is in the 90's. I eat healthy as b4 and add calories with an ensure a day. When I was working I started to lose weight (burning too many CALS), but since retiring on disability I have gained a few pounds.
I am considering adding some extra protein or Al's suggestion of creatine monohydrate to my diet to maybe keep the muscle that I have left.
 

michelleRN

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You bring up a good point, ltbeauti. I am still very active and probably push myself harder simply because I feel the need to take advantage of what abilities I still have that so many healthy people take for granted. Im sure I burn through a hefty amount of calories, both in my normal everyday activities and then just the hyper-metabolism that ALS brings.
 

happygardener

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I have been stuffing my husband and cooking up a storm..I want to keep his weight..he is still losing muscle.But this helps the fight!
 

marypat

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I was also concerned about cholesterol with a high fat high calorie diet. But my cholesterol is now better than it was prior to ALS. The high metabolism seems to be the key. I use the whey protein also. The extra role around our middles is known as ALS belly, it is do partly to the loss of griddle muscles in your midsection. I often think it's a bad joke that I weigh less than I used to but I have to wear larger size pants.
 

jdever9

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IL
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Question, I know that everyone is different, but I need some help understanding whats happening - I lost right shoulder - - can't high, or lift any weight, hit mouth with food, but right hand works - wrist is sore and I do the exercises and fingers seem to work with little stiffnes - recently (march) my left shouldhas stiffened up - my reach and lifting skills are declining - right wrist and hand ok so far - I am at a crossroads here - i am desperately trying to figure out what plans I should be working on - Oh my legs seem fine - just fatigue SO anyone else have a similar progression - I'm not sure what I should concentrate on, and as the MCA clinic neurologist - everyone is different see you in three months
 

Toto's Dorothy

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Jd, you would be better suited by placing this question under the pALS section. If you go there, start at the top above all the posts and I believe o top of the blue line. Hit new thread and start typing. Hope this helps.
 

IluvNY

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I've done some research on muscle loss and recently purchased some of vitamins.
 

IluvNY

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I've done some research on muscle loss and recently purchased some of vitamins.

Vitamins suggested for muscle loss:

Vitamin B12 (as methylcobalamin): 1 – 25 mg daily
Zinc: 30 - 60 mg daily (with 2 mg of copper)
Ginseng extract: 500 – 1,000 mg daily
Ginkgo biloba, standardized extract: 120 mg daily
Coenzyme Q10 (as ubiquinol): 100 – 400 mg daily, possibly higher depending on blood test results
PQQ (pyrroloquioline quinone): 20 mg daily
Acetyl-L-Carnitine: 1,000 – 2,000 mg daily
R-Lipoic acid: 240 – 480 mg daily
Whey protein: 35 grams daily, in a single serving
Creatine monohydrate: 1.25 grams daily
N-acetyl-cysteine: 600 – 1,800 mg daily
Green tea extract (standardized to 98% polyphenols): 725 – 1,450 mg daily
Pine bark extract (as Pycnogenol®): 100 mg daily
Trans-Resveratrol: 100 – 500 mg daily
 
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