i need an answer about weight loss

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Distinguished member
Jan 22, 2007
hello everyone,

i have a question and i sure hope some of you can help me. my husband was diagnosed in jan. of this year. he has lost 17 lbs. so far and looks very thin to me. however, he has been complaining the last few days that the lounge pants and casual pants he wears every day that both have elastic in the waist are 'too tight.' he is 'not' gaining weight, but there seems to be something going on with this one spot - his waist/stomach.

is this normal or is this something he should discuss with his als specialist. we go see her may 11th.

thank you. this forum is such a blessing to us.

Hi Jackie,

Your husband may be losing muscle weight in his limbs but gaining weight around the middle.

This is what has happened to me - my weight has been pretty stable - even though I have quite a gut now - it counters the weight loss in my arm muscles.

So I would not be overly worried - but you may just check with your Dr. next visit.

Good luck.

Well Jackie here's what happened with me. I started at 238 lbs and am down to 210 give or take a couple. First my chest muscles went away and what was left settled on my belly. Now every calorie I eat that doesn't get burned because of inactivity goes directly to my belly. Funny how that works. Men on the belly, women on the hips or so they tell me. So when I bend over the belly pushes up on the diaphram and lungs which makes you short of breath which isn't fun. Outside of taking up jogging or going on a diet which is a no no there is not much you can do about it but get bigger elastic pants. Mention it to the doc just in case there is something else going on but it's probably what Richard and I think.
I'm all about the elastic pants - I went from a 36 inch waist to a 40 inch waist in about a year - whee!

Big oversized comfy elastic waist pants rule!
Hello Jackie:
The loss of muscle strength includes the belly muscles. The abdominal muscles (when strong) provide support and give a slim line to the belly. If they can't do this job any more the belly gets saggy. So although there is weight loss there is an increase in waist size due to the weak abdominals.
weight loss in the belly

thanks so much for your posts. i was pretty sure that might be what was happening. i am printing out your posts for him now.

what would i do without all of you? i sure don't want to have to find out....

why would going on a diet be a no no?
I agree with Landscape. My DH has the same thing. He has lost almost 30 pounds in the last 2 years. His arms are very thin as is his back and chest, and his legs are starting to lose mass now too. But his belly is large. He has told me that after he eats he can feel the muscle weakness in his abdomen, and his stomach bloats out more until his food has digested.
Diets are usually a no no because you will eventually lose muscle mass and you need the calorie intake to maintain a stable weight. If and when bulbar symptoms show up you will eat less, lose weight and waste away rapidly. At that point it is very hard to gain weight back. In the initial stages of ALS if you are obese it may be beneficial to slim down but generally docs don't advise most patients to start a diet.
horace is going down very fast now

hello all. horace fell 2 xs sunday morn. and paramedics had to come get him
back in bed; now he's bedfast, eats and drinks very very little, soooo very
tired, weak and pale, and i can't see him holding out much longer.

i need you all - your love and prayers. thanks you all my friends in als forum.

I am so sorry, Jackie. This is heartbreaking to see your beloved suffering and slipping away. You have been down such a hard road, but the pain is no less close to the end even when you have known it was to come someday soon. My sympathies are with you at this difficult time. Sincerely, Holly

I'm praying for you and your husband. Very sorry.

Please hang in there...
I hope you can find some strength during this difficult time. It's so painful to watch your loved one wasting away, so frail. You certainly have my sympathy. Though we on this forum can't be together in person to help each other out, at least we can remember each other as we go through our days and lift each other up.
Take care, Jackie. I hope you can rest some and find a little peace somehow.
Hello Jackie. I think of you and your family often. Words of comfort seem to pale compared to what life has handed you. I just wish things could be better for you all. Hugs, Cindy
Thank You All For Your Love

I Just Read All Of Your Answers About Horace's Being Bedfast
After Falling Two Wks Ago. He Is Very Weak, Pale, And Sleeps
A Lot. I Am Feeding Him Ensure Through His Feeding Tube Now,
And Putting Many Vials Of Water Thru The Tube Also To Keep
Him Hydrating. I Am Trying Hard To Concentrate And Focus On
The Good Times And Our Days Left, Rather Than What It Will Be
Without Him.

Love To All, Jackiemax
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