Should I add weight?

[mich5]

Requesting information on the weight issue . . . My doctor has told me to track my weight weekly and he does not want me losing any. I've heard from him and the ALS Association that even adding 10 lbs won't be 'bad'. I am not thin, but not obese. For the ladies out there, I'm about a 12/14. My hesitancy in adding weight is being more of a burden on my caretakers as I lose strength (plus the added work to shower and dress for me when I have more weight on). Do pALS lose weight because we eat less from bulbar problems? Lose it when we receive a PEG and can't get enough nutrition? Or does the progression of the disease cause loss of weight as muscle goes? Is it advisable to add some weight now while I 'can'? I am eating whatever I want (all my favorites) without regard to calories as I realize I may not be able to enjoy eating later.

 

[LizT]

Mich5- PALS tend to lose weight because of all of the things you mentioned. Personally, I think adding ten pounds now is a good idea. Its a good idea to have some extra weight. If youre a 12/14 right now, adding ten pounds wont be too bad. Unless your caregivers are itty bitty tiny folks, I dont see how being that size would make it hard on them. I dont want to sound harsh, because it is very sweet of you to be concerned about being a burden on your caregivers- but this extra weight could potentially be a benefit. Theyve got lots of adaptive equipment out there to help with transfers and things.
Before I met my PALS i was a CNA. I could transfer grown men who were over 6' and 200+ lbs on my own. It can be done.
Best of luck

 

[mich5]

Thanks for your reply, Liz. Just noticed a recent post on weight and read through it. Also used the links contained in that post to read through the articles and video.

 

[sadiemae]

You are learning your way around! Also if you go down to the bottom of this page you will see a s"Similar threads for" list.

 

[SueG]

Also. Bear in mind that ALS increases your metabolism, so you need to eat more calories. I was pleased to put on 10 lbs in my first year, but now I'm slipping back. You might want to put on a few lbs while its easier.
Good luck!
Sue

 

[Ms. Pie]

I get dehydrated easily anymore so remember to drink lots of water too.

 

[dragonflydi]

My husband lost 60 pounds very quickly after his diagnosis. He started Rilutek right away and it exhausted him to the point of not wanting to eat. He was also trying a strict gluten-free diet on the recommendation of his naturopath and he just wasn't interested in food. He looked very gaunt and his neurologist told him to start eating whatever he wanted. As soon as he did that (and quit the Rilutek) he gained back 25 pounds and he looks wonderful. He has much more energy and feels so much better. His neurologist also told him not to worry about his high cholesterol--that new research is showing that high cholesterol can be beneficial in ALS patients.

 

[pearshoot]

one of my sympthoms was a sudden 20 lb weight loss but was able to gain 10 lbs back before being diagnnosed. it takes a lot of calories to maintain, ineed 2400 to 2700 daily so between meals i mix a health drink containing 5-600 calories each. happy to share recipe

 

[mich5]

I need to weigh myself soon :0) as I feel like I've put on a bit this past week. I DO find myself wanting to eat often and have felt like my metabolism is higher. So, thanks to all for confirming this. I have started to eat about every 3-4 hours or so - smaller meals than what I used to eat, but more often. It seems to be working as it's a good balance with all the medications I'm taking. (Empty stomachs and medicine/vitamins don't seem to go well together!) I'll be visiting the recipe threads soon to get some ideas. It's so ingrained in us to cook without fats, it's kind of fun to add whatever I want now. And it tastes better! I found out I can't really eat peanut butter anymore. :0( Too thick and my tongue doesn't work well enough. The first food I've ruled out . . . But, I'll still 'add it' to recipes when possible

 

[TedH5]

There are studies going on measuring the impact of a high caloric diet on PALS. Obviously as far as gaining weight follow your Dr's orders but every Dr and Nurse I have spoken to have stressed not losing weight.