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Brother

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Hi,

Greetings to all - new member here. My sister has been recently diagnosed with ALS and I'm trying to get a handle on her obesity.

Pre ALS diagnosis, it was not really an issue. We're all adults; you make your own lifestyle choices. Post ALS diagnosis, during my research, I read about bed sores and started to get worried that weight would be an issue. I started thinking less weight would equal less discomfort.

I then read that ALS patients should maintain or gain weight. So I backed off my assumptions. But, I am starting to interpret the advice on weight as 'normal weight'.

I'd appreciate any comments to help sort this out.
 

joelc

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I lost 80 pounds before I got my weight loss under control after ALS struck. I would not be too worried about it.How much over weight is she? Welcome to the forum sorry you have a reason to be here.
 

TedH5

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I had my first visit with the ALS clinic at Emory U today. They stressed that it is important to maintain your weight. They do not want you losing weight. I am not a Dr and have no idea what shape your sister is in, just relaying what I was told today. I know I could probably stand to lose 20 lbs but they told me do not lose any! I told them that I was on a diet when I received this diagnosis and that once they told me I had a incurable disease, the heck with that I am not depriving myself of food I enjoy! Hey when else is a Dr going to tell you not to lose weight and don't over do exercise! :)
Based on what I know I would not encourage your sister to lose weight. Of course her Dr is the best person to consult. Hope this helps!
 
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trfogey

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The best thing for your sister to do about her weight is to follow her doctors' advice on nutrition, weight gain/loss, etc. As the disease progresses and her muscles become paralyzed and start to atrophy, she will lose weight.

Please realize that as your sister progresses with this disease, her energy expenditure for the basic activities of life will go up as her muscles become less efficient. In some patients with ALS, metabolic changes occur that also increase the patient's energy requirements. What you currently view as your sister's obesity may in fact prove to be her first line of defense against harmful weight loss that would cause worse problems than it solves.

Good luck to you and your sister.
 

sadiemae

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My husband is 5 ft 9, and 205 lbs, mostly in his belly. The big belly is causing extreme back and neck pain, as well as interfering with his breathing. Our new neuro suggested he try to lose a few pounds, since his ALS seems to be UMN dominant, and slow progressing, so, after much thought, we are going to try to lose the belly, very slowly. He has lost no weight at all in the year since his DX. He does have a PEG, but right now has no restrictions on eating by mouth, other than common sense. It's a tough call, and we are afraid that he will lose weight, but not in the belly.
 

Brother

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How much weight? Let's just say we're talking Gilbert Grape's mother's weight. I'm out of the country now, but of course, the doctor speaks, we listen. Me being out of the loop is hindering my full understanding of the situation.

And yes, I've read a lot about the importance of maintaining weight, but as I mentioned, I am getting the impression that maintaining weight means to maintain a 'healthy plus weight'.

You've probably read Tony Judt's 'Night'. It wasn't until after I read his essay that I thought there are things to be done. I feel I have an obligation to do whatever it takes to mitigate the effects this terrible disease will have on my sister.

So, that is why bed sores popped into my mind. I thought, 'Could we reduce the risk of those?' I thought about muscle tone and exercise - do we need to encourage walking?, and I've thought about dignity since the idea of a hoist to get from wheelchair to bed has been suggested. Mind you, we are in the early stages, and as I understand it, foot drop is the outstanding symptom right now.

If the consensus is 'the more weight the better', then I'll be moving on to some other problem that I may hope to make a contribution to. But I'm still not feeling resolved.
 

Marjorie R. Wilcox

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Rick lost 40 pounds on purpose after diagnosed with diabetes. It helped his numbers and made it easier to tie his shoes. He then weighed 242 at 6'1". I'd say that was good 5 years ago. 3 years ago he was diagnosed with ALS and was told not to diet any more. He has gained back 20 pounds and the doctors would like him to drop a few. I notice that some days he looks heavier than others. Anybody else experience that in themselves? Some days his arms look heavy... even one more than the other. Some days his belly is bigger. We have decided to just pay attention to his diabetic numbers and forget the weight. He has slow progression but has recently begun to use his walker. Swallowing is beginning to be taken notice of... meaning sometimes he has to clear food from his throat. I would expect as time goes by, overweight won't be a concern, but the opposite. If this woman is way overweight, I'd say that isn't good for any reason and some... say 20 to 25 lbs reduced would be a good thing.
 

trfogey

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How much weight? Let's just say we're talking Gilbert Grape's mother's weight. I'm out of the country now, but of course, the doctor speaks, we listen. Me being out of the loop is hindering my full understanding of the situation.

And yes, I've read a lot about the importance of maintaining weight, but as I mentioned, I am getting the impression that maintaining weight means to maintain a 'healthy plus weight'.

I was probably 50 or 60 pounds overweight when I was diagnosed with ALS three years ago. I was never advised by my ALS doctors to lose any weight. I was in fact advised to attempt to maintain that body weight. However, despite my best efforts to maintain that weight, I have managed to lose about half of that excess weight. Most of that loss is muscle atrophy in my upper body, but I am increasingly losing muscle in my lower body as well.

You've probably read Tony Judt's 'Night'. It wasn't until after I read his essay that I thought there are things to be done. I feel I have an obligation to do whatever it takes to mitigate the effects this terrible disease will have on my sister.

So, that is why bed sores popped into my mind. I thought, 'Could we reduce the risk of those?' I thought about muscle tone and exercise - do we need to encourage walking?, and I've thought about dignity since the idea of a hoist to get from wheelchair to bed has been suggested. Mind you, we are in the early stages, and as I understand it, foot drop is the outstanding symptom right now.

If the consensus is 'the more weight the better', then I'll be moving on to some other problem that I may hope to make a contribution to. But I'm still not feeling resolved.

There are ways to manage all of the problems you mention here from orthotic devices that will help your sister with walking to special mattresses, mattress covers and seat cushions that go a long way toward preventing bedsores and other pressure sores. There are lots of posts here on the board that talk about these things for you to look at when you need to know about them.

I admire your concern for your sister and your desire to help her, but I sense that you're kind of spinning your wheels here, most probably because you are trying to do a "crash course" in learning about ALS in order to map out a strategy for dealing with problems that you expect to see in the future. Unfortunately, that's what most people do -- the ones that don't go catatonic with denial -- and they become very frustrated and very scared because late stage ALS is a very scary thing for normal people to think about.

The good thing is that end-stage ALS takes a while to get here -- years, rather than days or weeks -- and you'll have time to learn what you need to know to help your sister. You don't have to become an expert overnight. Start with current problems and find a way to work around them. Learn how the disease progresses so that you can begin to anticipate the next set of adjustments and accommodations that your sister will need to make. Mostly, don't bite so much off the ALS knowledge block that you choke yourself on it. Relax, take your time, and ask specific questions about specific things here on the board and you'll get a ton of tested and practical information that will be invaluable to you.

Once again, good luck to you and your sister.
 

Brother

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Nicely said, trfogey .... big thanks.
 

Miss

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My husband was very overweight when the doctors first suspected ALS. They suggested that he get off as much weight as he could (safely) in the first few months.
 

irismarie

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me being overweight has posed a heap of problems for carers trying to transfer me and consequently more stress for me. .I think when the docs say maintain weight, they mean maintain a good healthy weight, not one that is going to make more stress. Reasonableness (reason?) in all things
 

Brother

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Hi irismarie. I'll have the Reason & Reasonableness Combo with a side of Humor. Hold the Stress.
 

Miss

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Your sister is going to be a lucky girl. You're a caregiver with humor!
 

irismarie

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With fries or without?
 

Brother

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Hi All, I believe it would be appropriate to share the info I've received so far on this topic:

From Hiroshi Mitsumoto, M.D.; Neurological Institute:

In general, ALS in an overweight person is rare. It is interesting and we do not know why. Therefore, we do not know what the best recommendations to overweight person are. I would generally recommend, if they loose weight they can lose weight a few pounds a month. They still should basically maintain the weight -- that has been my recommendation. We do not have enough experience with it.

Sister's Doctor:

"Weight loss would certainly be good for (Brother's sister)"
 
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