Weight, loss/gain

[LizF]

I've always been overweight, and when I was dx with ALS I read that it was good to have a little extra on because I was likely to lose some as the disease progressed.

I haven't lost any, actually, I've gained weight. I read recently that once your muscles have atrophied, the calories aren't burned as fast.

I would like to lose 20 lbs or so as I that extra weight is now uncomfortable.

What are your thoughts/experiences with weight gain/loss?

 

[Vincent]

The best diet for ALS as far as I've read seems to be 150 per cent of maintenance calories with high carbohydrates. Also a BMI between 30-35 seems to be neuroprotective. We actually burn way more calories than the average person. One of the first things I was told was you now have an unlimited diet. Losing muscle you would think a high protein/fat diet would be best, but people use that to lose weight. Weight loss usually speeds progression, DO NOT LOSE WEIGHT. ALSTDI has a good article on the benefits of a high carb diet. It's worth checking out.

Vincent

 

[lgelb]

Vincent, can you point me to the article you mention? The latest study I see quoted only included 24 PALS, some of whom were mixing tube and mouth feeding, and so does not persuasively make the high protein bad/high carb good case. There's some early mouse work underway, but those models are unlikely to cut and paste to humans any time soon.

The evidence of which I know suggests high protein/fat/fruits/veggies (blended if needed of course), while avoiding the most heavily-processed or simple sugar-laden foods. And let's not forget hydration, because that is essential to process all this food.

 

[Vincent]

Here's a link to the article. High-calorie feeding may slow progression of ALS | Harvard Gazette Yes it was a small study, but the results seem to point to what I have been told since being diagnosed, don't lose weight. It also justifies my BMI of 33. I'm 3 years post dx and still walk, talk, and my hands still work.
Vincent

 

[lgelb]

All studies align on high-cal/maintain optimal BMI. It is how you get there that is more at issue.

 

[affected]

Laurie would you also please post links to point to your sources so we can all benefit from reading all sides? thanks heaps

 

[KimT]

The biggest mistake I've made was to pack on 25-30 pounds within a year of my diagnosis. Mayo scared me into doing it and I did it all wrong. I was always very muscular but lean. I weighed about 120 when I was diagnosed. Now I weigh 145 and feel that all of it is belly fat. I still have core strength enough to do situps (I don't but I could if I tried.)

My GP and I both believe a high fat diet with plenty of protein, lots of fresh, organic fruit and veggies is the way to go. I know when I cut out all the sugar (except for fruit) and got rid of the grains, I felt lots better and had more energy. When I fell off the wagon and ate some sugar a few days in a row, I felt tired and depressed. I believe processed foods are bad for everyone, not just PALS.

My BMI is 23. The reason it is low is because I'm VERY small boned and BMI's don't take into consideration bone weight/size. My waist went from 26 to 31 and I felt like all the fat went to my middle.

The Keto diet is neuroprotective but you will probably lose weight and some of that weight will be muscle.

After reading tons of studies, articles, opinions, and studying human nutrition at the graduate level, I decided to cut out all processed food, all grain (except my morning fiber), and I'm reducing dairy (I only eat organic Greek yogurt.)

I honestly believe rapidly gaining all that weight contributed to my spraining my ankle.

I'm going to lose 5 pounds VERY SLOWLY. I'm also walking on the treadmill for 1/2 mile a day to see if I can build some of my leg muscles up again. My good leg atrophied after sitting on my butt for 6 months with the sprained ankle.

I also think too much fat around the middle makes it harder to breathe.

 

[KimT]

Also, the people in the study had already lost a bunch of weight. That is an entirely different story.

 

[EliSjo]

I'm finding it difficult not to lose weight, over the past 18 months I've lost 17 kilos, which I guess is about 37 pounds. It wouldn't hurt if I was a healthy person, but I've done absolutely nothing to promote the weight loss. The only visible loss of muscle tissue (to me anyway) is on my hands and I'm sure they haven't contributed much.

I do know I eat smaller portions than before, mainly because it takes ages to eat a plate of food and I get bored with it, but I haven't really changed anything in what I eat. But maybe I should

 

[DaChief]

I lost ~ 40 pounds over the 8 months preceding my feeding tube installation. . No one seemed concerned about it because of BMI numbers. It just got to where eating was a pain and took too long due to swallowing issues. I have stayed steady weight wise since I started using the tube but have not seen any reason to try and put weight back on. Guess I should read up on it some more.

 

[affected]

EliSjo you burn calories faster when you have ALS. If you don't consume enough calories it seems progression can hasten because your body will start to burn up muscles that are beginning to fail to gain the energy it needs.

If you take a long time to eat this is a red flag that you might consider a peg now. You can also do lots of things to up the calorie intake - search here and you will find we discuss this a lot and many members have great strategies to provide high calorie diets that are quick and easy to consume.

Maintaining weight is so important.

 

[LizF]

I also think too much fat around the middle makes it harder to breathe.

Yes, that is what I am thinking. I have noticed a difference since my stomach dropped into the Buddha belly position, yet my most recent respirology testing was still just fine.

 

[Texas Quilter]

My clinic always tells us not to lose any weight. I had lost 8 pounds and they immediately wanted to know why -- i.e. was it deliberate or was there a problem. The dietician told me that when you lose weight, you are losing good muscle cells along with the fat cells.
Dianne