Old 08-30-2017, 12:34 PM #1 (permalink)
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Cool Great Weight Debate

Okay, everyone suggested starting a topic…so let’s try it. What is everybody’s doctor telling him or her about his or her weight? For the past ten years I have been going to the same ALS clinic and seeing the same team. From the start I was informed to maintain and gain weight if possible, “take in as many calories as you can, because you are burning more than the average person when you walk and you don’t know if you are going to need that extra weight later”. Which I understand, but that was ten years ago and I was in my mid-30’s and in the “limbo waiting period”. So at that point I was running about 150lbs and I stayed that way until almost a year ago when I quit smoking (not because of diaphragm or breathing). Now I’m going on 45 and gained about 15lbs after quitting and I am running about 165-170lbs now. I have been to two appointments since and they noticed the gain, but are not concerned with it. Now on the flip side, with that gain my cholesterol is now back up into the 300’s (which I take Lipitor for).

Now the way I see it I have two options (other then smoking again which I would LOVE):
1 – Continue with the extra weight and keep the neuro happy, but not the cardiologist.
2- Go on a diet and loss the weight and keep the cardiologist happy, but possibly concern the neurologist (don’t really feel like dieting and not smoking either).

That is my situation….what kind of conversations have you had with your neurologist and/or nutritionist on your team?
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Old 08-30-2017, 01:28 PM #2 (permalink)
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Default Re: Great Weight Debate

My neuro likes more weight. My gp only cares if I am "healthy". At my peak fitness before MND I weighed a solid and fighting 150 lbs of pure muscle. I experienced rapid weight loss (20 lbs in 3 months) last year and my neuro was very concerned. The weight I lost was likely all muscle, as I am slightly "bigger" even though I weigh less than at full fitness. I am still ambulatory, and my current weight distribution places a burden on my joints. You are right- it's a balance to try and be healthy while getting less exercise.

You don't necessarily have to go on a diet (by that, I assume you mean calorie restriction?), but can definitely change your diet to reduce refined sugars and processed food. It would likely help with your cholesterol levels too. Your MND clinic nutritionist may have some guidance for you there. Mine was excellent in providing me a variety of dietary options and we settled on a diet that reduces "inflammation". No calorie reduction required, but eating food that provides adequate fuel for overburdened muscles/joints and is healthy for the heart. As long as my weight loss is not sudden, the neuro is fine with it.

I think those with PLS are in an unusual spot with regards to weight. There is research indicating those with ALS and have a higher BMI survive longer. I am not sure the same applies to PLS, as it seems weight does not affect prognosis in the same way. With PLS you might run into more burden if you are not fit due to the "regular" issues that arise with inactivity and poor eating habits. Heart disease, diabetes and overburdened joints are all life limiting if piled on top of neuromuscular disease. If you haven't been diagnosed with ALS, it's likely a wiser course to aim for heart health by a change in diet and as much exercise your condition allows you.

Your clinic nutritionist may have some great resources with regards to a proper diet based on your unique needs. The prognosis for those with PLS seems to be a "normal" life span- so heart and endocrine health is a life improver and a priority over something that affects prognosis for those with ALS.
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Old 08-30-2017, 02:00 PM #3 (permalink)
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Default Re: Great Weight Debate

Now that is an example of a “reply” that should be occurring in multiple threads here.
But back to business…Great reply and first “no” after almost 10 years I show no signs of Lower Motor Neurons being involved. Just the normal started with tripping, then stiff walking, clonus in my legs and hands, and now strained/poor speech. Anyway that’s the short version.
I tend to agree with you in your view that at this point my focus should be on my cholesterol and heart, since I have a family history of problems there and this MND can last awhile. My brother had quadruple bypass and passed away of a heart attack at 43 and my mother had triple bypass and passed away last year at 63 after another heart procedure.
So at this point I think it appears that given research and science my chances of having circulation & cardiovascular trouble would come before complications from PLS.
I think we can all agree that even in our limited capabilities we are not going to put on any more muscle mass. So all my weight gain went to my stomach, so I like to joke to my wife and kids that my stumbling is just a matter of trying to keep up with my stomach as it guides me the way I want to go.
Although I am not above going and buying a pack of cigarettes if given the green light from my wife...just saying

On another note....I remember nine years ago Stains being a big part of Motor Neuron Disease conversation. I guess nothing ever came of that theory.

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Old 08-30-2017, 03:01 PM #4 (permalink)
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Default Re: Great Weight Debate

A quick note here- I would think it really would set a person back to have surgery while also suffering with PLS/UMND. Anecdotal, but injury and surgeries seem to cause folk to experience sharp upticks in progression. It's a definite consideration in maintaining good health for as long as possible.

Big bellies. I don't have the muscle to "suck it in" any more. So I'd prefer to blame mine on lack of core strength and not at all about fat%. It's my story and I'm sticking to it.

Thanks for jumpstarting conversation in the PLS subforum. You're right- it's been quiet and that's a loss for the community.
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Old 08-30-2017, 03:11 PM #5 (permalink)
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Default Re: Great Weight Debate

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A quick note here- I would think it really would set a person back to have surgery while also suffering with PLS/UMND.
I would also think that recovery from surgery would be problematic since they even warn about recovery from an injury due to a fall.

Also, as you mentioned it possibly accelerating symptoms due to the surgery it was once thought that just a traumatic incident or situation was enough to trigger the whole process from the start.

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Old 08-31-2017, 04:03 PM #6 (permalink)
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Default Re: Great Weight Debate

I don't know any answers on this but my opinion would be that you would want to hold good weight and reduce your cholesterol without those meds if possible.

Dieting doesn't work well for lots of reasons, in the typical sense but maybe you can find some replacement foods for some of what is maybe raising your cholesterol?

If you are likely to live a long time with PLS, then it would make sense to stay in the healthy high end of BMI.

Sometimes some of the members here only check in once or twice a week so a thread can take a little time to take off
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Old 08-31-2017, 04:32 PM #7 (permalink)
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Default Re: Great Weight Debate

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I don't know any answers on this but my opinion would be that you would want to hold good weight and reduce your cholesterol without those meds if possible.

Dieting doesn't work well for lots of reasons, in the typical sense but maybe you can find some replacement foods for some of what is maybe raising your cholesterol?

If you are likely to live a long time with PLS, then it would make sense to stay in the healthy high end of BMI.

Sometimes some of the members here only check in once or twice a week so a thread can take a little time to take off
I would love, love, love to accomplish your first sentence. Heck, I would write a book on how to do it. But, unfortunately I've had a cardiologist and been on statins since I was 16 (gunna be 45 in November, so what is that 28 years?). Long, long family history on my mothers side of high cholesterol. And like our cardiologist had said we could eat all vegetables and our bodies would still produce the bad kind.
And yeah you 100% right... I guess people can't sit on here 24/7. I was just trying to make a point that maybe good informative topics might disappear without having a good deal of conversation in them. I meant no harm in my statement.
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Old 08-31-2017, 10:36 PM #8 (permalink)
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Default Re: Great Weight Debate

I'm 6'3" and 200 lbs. that's actually thin for my height. At the clinic visit the neutrisonist said no special diet and eat all I want. Lately I've been eating like a pig and still weight the same. I can't seem to gain weight even if I try. I have some heart issues also. I have afib. So I'm also taking statins and blood pressure meds and a rhythm med. I have been through a lot. I also had cervical stenosis and in the beginning of my symptoms they thought that was causing all my problems. So I went through cervical lamanectomy surgery. Well that didn't fix anything And I had to be in a neck brace for 3 months. Then they sent me for a brain MRI to check for tumors or MS. After that was all ok then sent me to the Parkinson's neurologist. He said that wasn't it and finally I ended up with the ALS neurologist. The last few years have been pretty crazy. So he said they ruled everything else out and I had to 2 emgs and was sent to the ALS clinic. The weight issue bothers me a little because my legs look like they are getting really thin and I'm eating so much. Time will tell.
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Old 08-31-2017, 10:58 PM #9 (permalink)
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Default Re: Great Weight Debate

Kevin, et al-

I come from a family of high cholesterol havers. It seems to be hereditary. The consensus seems to be, high cholesterol + high blood pressure = Lipitor. Those of us who have high cholesterol but healthy or low BP just keep track and eat right. I have been informed by one of my doctors that there is evidence that lowering cholesterol can affect mood negatively in some people and that cholesterol can also be neuroprotective in some instances. There seems to be a debate about the stuff. I have slow progression, so I am not going to alter my current regime unless my blood pressure goes up for some reason.
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Old 09-01-2017, 10:03 AM #10 (permalink)
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Default Re: Great Weight Debate

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I'm 6'3" and 200 lbs. that's actually thin for my height. At the clinic visit the neutrisonist said no special diet and eat all I want. Lately I've been eating like a pig and still weight the same. I can't seem to gain weight even if I try.
I am 5'9" and averaged about 150-155lbs when diagnosed up until last year when I quit smoking. That was the only time I put on weight. Now I am hovering between 165-168lbs. But then again, in turn, I saw on the lab website were I get my blood work done that the cholesterol went up. Still not as bad as when I stopped taking Lipitor and it just bearly broke 500...that was at its worst.
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Old 09-01-2017, 02:35 PM #11 (permalink)
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Default Re: Great Weight Debate

Shiftkicker, regarding your reply of 8/30/17 at 3:01 PM...

The Forum has changed over the past two years, mostly the past year.... the "Off Topic" sub-forum and all it's sub-titles used to be active nearly everyday. But... changes sometime bring difference.

Whatever, my new favorite saying... "Nothing stays the same."

Back to the weight gain/loss topic. (Gee.. my new favorite sayings fits that topic too.)

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Old 09-01-2017, 07:50 PM #12 (permalink)
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Default Re: Great Weight Debate

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The Forum has changed over the past two years, mostly the past year.... the "Off Topic" sub-forum and all it's sub-titles used to be active nearly everyday. But... changes sometime bring difference.

Whatever, my new favorite saying... "Nothing stays the same"
WARNING: Now I know I am going to upset people here with this post, so proceed with caution!!!!

It is true that nothing stays the same, but that doesn't mean that change is needed. Maybe there are too many sub-forums within the ALS Forum website?
That is just my thoughts on maybe the site has become too confusing of what to post where.
Again this is definitely going to upset people, but it was a lot more streamlined nine years ago and not so many categories. Sometimes less is more and it keeps people more focused.
And....let the bashing begin....
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Old 09-01-2017, 07:52 PM #13 (permalink)
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Default Re: Great Weight Debate

Kevin, if you came here for an argument, I'm going to have to disappoint you. Or am I arguing now? Now you have me all turned around.

PS- I can get pretty creative with name calling but you'll have to give me a day to think up something brilliant. Please stand by...
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Old 09-01-2017, 08:42 PM #14 (permalink)
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Default Re: Great Weight Debate

What I usually do is just click on "new posts." Then I decide which ones I want to read. When I have a good day, I usually help with DIHALS.
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Old 09-01-2017, 09:49 PM #15 (permalink)
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Default Re: Great Weight Debate

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Kevin, if you came here for an argument, I'm going to have to disappoint you. Or am I arguing now? Now you have me all turned around.

PS- I can get pretty creative with name calling but you'll have to give me a day to think up something brilliant. Please stand by...
Sorry if I came across that way... I just re-read my post and all I was trying to say was that there are so many more sub-categories than years ago that people might be getting confused where to post.

No harm meant (personally I don't have it in me to argue). But if you don't want me to continue to post due to my meaning or tone being misunderstood I understand. I just wanted to start contributing and starting conversation like years ago.
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