Big belly

[sadiemae]

My husband looks as if he is 12 months pregnant! This has been a problem for the last 3 yrs, and before his DX he tried to lose it, to no avail. Doctors are now putting his probable onset of ALS to Oct 07, about the same time the BIG BELLY appeared. At our clinic visit yesterday(first one in San Fran) the doctor suggested his severe back and neck pain is due to his being overweight (5ft 9 in, 206 lbs) and suggested he try to lose weight, and thus lose the belly! I was aghast, as all my research shows that PALS should not lose weight, but, I remember all the back pain I had while pregnant, and maybe he has something. He said if he lost say, 10 or 15 lbs, his breathing would improve, as well as reducing his pain. Since he tried to lose the belly before, and couldn't, I am hesitant to put him on a lo cal diet to lose weight. For all of you with BIG BELLYS, Any suggestions? HUGS Lori

 

[CAHPAH]

Lori
That's a tough one. My first thought is along the same lines as yours but maybe the doc is right about the breathing. Has your husband lost any weight since his diagnosed last year? Is he still eating well? I know this isn't any help but just wanted you to know I'm hearing you. Best wishes.

 

[abbas child]

Lori, I don't know where your husband is in terms of walking/wheelchair, etc. I'll tell you my thoughts... I've talked with the dietitian at the Clinic about this issue. We need fewer calories to maintain weight as we become less active. Some people tend to drop weight from the beginning and need rich food to try and keep weight up. However, those of us who can still eat but are less and less active, need the nutrition from good foods; V-8 juice, pureed vegetable soups are good to add to our diet. On the other hand, sweets are not good except in moderation. Sugar causes constipation, as one very good reason to be careful, as we end the active life that keeps up our GI tract. High fats are great for those not able to get enough calories, but not good for us who can still ingest plenty. Bottom line for your husband is, I believe, not a drastic diet at all, but lower sugar intake as well as fat intake. See if you can't slowly get rid of some excess weight so that he feels better.

Even when his weight is closer to normal, the belly will be there since he's losing muscle in the abdomen. That is my situation... no muscle to keep the organs in place. Lying down, my abdomen is pretty flat. Again, I don't know his progression. If he's at PLM, and has a user name there and a profile, I'd be glad to know he's "yours", and check it out... just PM me that info if you'd like.

Ann

 

[sadiemae]

Ann, I do have a PLM account, but could never figure out how to put his data in. He has lost no weight at all since DX. He can still walk, and walks with a cane in the house. He uses his powerchair outside for the most part. Two weeks ago we went to a baseball game, and there were no handicap spaces left so we had to walk 4 blocks, and he paid for it the next two days. As far as eating, he has had his PEG since Nov, but has no restrictions on eating by mouth, other than common sense. No aspiration issues at all as of the last swallow eval in June. He does about a can a day by tube, and the doc suggested we stop those. We have a nutritionist with the VA who will come to our house, so we will call her, and have her set a plan up. His FVC was 68 in June, was 60 on Monday at the new clinic, but the test was done at the end of a 7 hour day, and he was hungry and dehydrated and tired at the time of test. I was thinking of getting him a pregnancy back brace, as I used one when I was pregnant, and it helped me.

 

[abbas child]

Lori, I feel pretty ignorant about his type onset, etc. Was it in his arms? I personally think breathing would be harder if there is more weight than "average". I know that although I was still 93% FVC in May, if I have a heavy book on my chest while reading in bed, it feels harder to breathe. I know that I do not believe gaining all the weight we want and eating junk food whenever is at all "fine", although I've read many reports to the contrary.

One other reason to get excess weight off is for the sake of the caregiver when the time comes that help in transferring is needed. Even being adjusted in bed has to be done now by Phil. I cannot shift myself at all from the waist down, yet need to be aligned properly in order to stay comfortable.

And, just to be open, here... no day goes by without a piece of dark chocolate. Smile. No fanaticism, just trying to make it easier.

Hugs,
Ann

 

[halfin]

This is a tough situation. Prior to ALS, I was into fitness and conditioning, and struggled for years to keep my weight down. The conventional wisdom in the fitness community is that it's very hard to lose fat without also losing muscle. The body tends to hold onto its fat stores. The only way to accomplish it is to work out very hard while dieting.

Now there are two problems applying this to ALS. First, we are not very active; and second, even to what extent we are active, our nerves do not carry signals properly to the muscle, so many of the muscle fibers may not be activated. These factors would tend to trigger the body to reduce muscle mass when dieting.

Maybe in your case it would be a worthwhile tradeoff. However if your husband is spending more time in the power chair then presumably his belly fat is not hurting his back in that position. The breathing might be more of an issue.

I do face a milder version of the same problem. I'm 5'9" and about 185 lbs. I've put on 20 lbs in the year since diagnosis. My belly is growing and an old back problem has flared up. I was about where your husband is as far as mobility maybe 2 months ago, but my legs have gotten weaker and it is tough to do more than cross the street using a cane. However I haven't had much atrophy and my arms and legs still look pretty normal. I'm not skin and bones by any means. I attribute this to my weight gain, it is preventing my body from consuming muscle tissue. Still I was advised by my doctor not to gain too much more, not to go over 200 lbs. So I am leveling off now and in fact was down to 180 when I weighed myself a couple days ago. But I don't want to lose at this point.

 

[olly]

hi lori.
well i am totally at the opposite end of the scale.
like i said to you before i do get back pain but i think mines due to stress from leg spasticity ect,common in pls.
i do very little but try to eat high calorie foods,i am very thin and find it hard to maintain weight.
honestly i dont think a diet would work,it will come off everywhere else before his belly.........bellys and bums are the last places weight drops off.

 

[Peter12155]

Hi, I am a naturally skinny person all my life. After my diagnosed. I started losing weight, about one pound a month in the last six month. My observation with PALS is that if you are not a fat type of person, like me, you just lose weight due to muscle loss and you remain skinny no matter. However, with a person who is fat and gains weight easily, ALS will cause muscle loss, but not fat loss so that person keeps on gaining weight or maintains his/her weight. The doctor and dietitian told me to just eat and eat, but being that I am born with only so many fat cells, I will continue to lose weight. Does that make sense?:?:

 

[Josall]

sadiemae, My big belly is from the lack of diaphram muscles to hold it in. I would guess your husband has breathing problems like me (NIV 24/7 and use a pwc) which was one of my first symptoms. A weak diaphram and trunk muscles can contribute to breathing and back pain also. My neck pain is simply atrophy of the muscles that support the head. I would never lose weight on purpose, need to have around in case of an event that I need the energy for. Just my thoughts.

 

[GlenBrittle]

Welcome to the big belly club.

I was a wee bit overweight (45 lbs+) and I asked the doctors should I lose weight . The answer was a NO!

I love to eat, so this was not a problem. Today, its a struggle to keep it on, as muscle atrophy is happening everywhere.

My opinion is to treat the pain and keep eating.

Glen

 

[sadiemae]

Treating the pain is what we have been trying to do. He has been getting steroid injections, which give temporary relief, and we were going to have a radiofrequency rhysotomy next week, which actually burns the nerves, and our Neuro said NO WAY, do not do it. We agree with not doing the rhysotomy, but want to figure some way to get rid of the belly. My husband thinks liposuction would do the trick. I do not think they would do it on him, but putting it out there. Is liposuction on the BIG BELLY an option for a PALS? We also agree with all the comments on not going on a drastic diet, we are going to cut out a few of the "Bad" calories. The doc seems to fell that cutting out 300 calories a day will help him lose weight. He suggested we stop the one can of Jevity a day, which would cut down 300 calories, but our nutritionist at the VA and me believe it is stupid to cut out the nutritious calories. She will be coming out for a home visit on Tuesday. In the meantime, I am going to stop adding extra fat in everything I cook, and switch to a lo cal ice cream or frozen yogurt. Another quick thought, What about a Pregnancy back brace to ease the back strain?

 

[abbas child]

Your common sense dietary changes are what I'd do, Lori. Just check the sugar in the low cal frozen desserts. My father ate the low fat frozen yogurt every night and is now borderline diabetic... and quite heavy. Bummer.

Having never been pregnant, can't help you with the back brace idea. Boy, if they'd do liposuction on him, that would be neat!

 

[Al]

What about a back brace like the guys at Home Depot and those places wear?

AL.

 

[sadiemae]

tried that didn't help Al.

 

[trfogey]

Sounds to me like you might be getting some crossed-up advice between your VA doctors and your ALS clinic doctors, as evidenced by the conflicting advice about the neck and back pain. If the ALS clinic doctor thinks that weight loss would be safe and effective for your husband, then he and the nutritionist at his clinic should provide and manage the weight loss plan. If, on the other hand, he's giving an off-the-cuff opinion about your husband's neck and back problems without doing the necessary diagnostic workup to back up his opinion -- which is what it sounds like he's doing to me, by the way -- then your VA doctors need to consult with him before the VA takes on the management of the weight control plan.

Both sets of doctors need to treat your husband as a whole patient and quit dividing him into convenient pieces to suit the particular conveniences of their own specialties. Don't let them get away with it!