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mcwtlg

Active member
Joined
Dec 24, 2014
Messages
30
Reason
PALS
Diagnosis
02/2015
Country
US
State
TX
City
Allen
I just had my second quarterly visit with the Neuro since my diagnosis.

First off, physically I have nothing to complain about compared to a large number of people on these forums. I have lost fine motor skills, strength, and coordination in my left (non-dominant) hand only and a little atrophy in my left arm. No breathing/swallowing issues as of yet. The Neuro is pleased that this is progressing slowly. I was a runner but stopped to avoid damaging something that might not heal properly. I walk and do elliptical now. Not much else physically.

That being said, the neuro said I have lost SEVEN pounds in the last three months, despite the fact I eat 2500 calories a day (5'10", 165 lbs - walk/elliptical ~2 miles per day). He said it is common for ALS patients to have a surge in metabolism and burn more than they are taking in and suggested I eat ~500 calories more per day. When I told him about my diet (generally my wife and I eat healthy) he said "veggies are good but low in calories (yes I know this!) and you need CALORIES. Do not be afraid of fat." I told him I have started adding more protein to my diet and reducing things like pasta and white potatoes and while he said that was good, he still wanted me to eat more. He then made me laugh when he told me to indulge a guilty food pleasure 1-2 times a week. He said, "eat more ice cream". I just had to laugh.

Well since my wife went with me on this one (the first time for her) she now will be tracking my food intake while I am at home to make sure I get more calories.

I know it is common for many ALS sufferers to get a Buddha belly but how common is it for the opposite to happen?
 
Not at all uncommon. It is very important to maintain your weight. It will help with disease progression...meaning people who are losing weight seem to progress faster. You need some high calorie smoothie at night or a bowl of ice cream daily. Or whatever is high calorie that you enjoy. Your metabolism will burn it. I think the buddha belly comes from the muscle atrophy making a belly seem bigger than it is
 
I've lost about 15 pounds since last April. Had no belly then but am developing one now. I'm 5'10 and 143 lbs. I think mine is due to my abdominal and intercostals weakening so what's inside isn't staying where it's supposed to.

Vince
 
Keeping up those calories early is so important.

My Chris lost weight steadily from early on and would not increase his calorie intake - so no buddha belly, just extreme weight loss on top of atrophy and rapid progression.

I'm glad your wife will help get those extra calories into you.
 
Yeah Vince, I would think that contributes also
 
I wound up losing 70 pounds by the time I was diagnosed. I need more calories now, but find them hard to consume.

Ice cream is a favorite way for me to get calories. I also use olive oil (high quality evoo) liberally. I get a lot of calories from it. I eat a lot of homemade mayonnaise made with a good canola oil.

I try to find ways to add calories to healthy meals. We like salmon, and I have mine served with a mayonnaise dill sauce. It probably doubles the calories in the entre for me. It also helps the salmon to slide down, enabling me to still eat it.

Despite my thinness, my belly has shifted so that it looks abnormally large. Count me in with the buddha belly. I blame it on the weakness of the muscles in my trunk.

Steve
 
When I went to my first clinic, a year ago, I weighed 143 lbs. I'm 6'1. Everyone who participated in my clinic told me I needed to gain weight. They told me to eat a diet I wasn't used to. I had always eaten healthy, but I knew I need to gain weight.
I began drinking three to four bottles of Boost plus a day, a lot of pizza, hamburgers and snacks.

At my last clinic visit, the nutritionist came into the room, looked at the computer, then looked at me and asked me to verify my name. She couldn't believe I had gained 25 pounds! I've never eaten a diet like this and still don't like eating this way. I've always eaten healthy. But, I guess it beats the alternative. My friends say I look better.
And, it seems like it all went to my stomach! I'm a Buddha belly guy now..
Marty
 
I woke up this morning to do a light workout (elliptical and walking) and found a snickers bar in my lunch bag that I packed the night before. This was on top of a 5 oz piece of salmon, 3/4 cup of lima beans, a large ear of corn, 1 cup of grapes, and a Kashi bar.

I guess she is serious. :)

Thank you all for the info. I will keep it in mind.
 
I've always been a very healthy eater and ate mainly organic.

You can increase your calories with healthy food. How about making an avacado smoothie. If you eat dairy, you can add some organic Greek Yogurt and coconut oil. That one smoothie will be at least 500 calories and will give you some other health benefits.

Another healthy alternative is throw in a couple ripe bananas, some organic peanut butter, and milk. Healthy peanut butter milk shake.

I've gained 10 pounds since December and most of it went to my belly. I did it the unhealthy way (ice cream, key lime pie, butter popcorn.) I think the healthier way will be better for your brain chemistry and general health.
 
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