Any suggestions to help with weight loss?

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rmt

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My husband currently has a probable PLS diagnosis (the VA called it UMN Dominant ALS which allows us to get benefits, but his last EMG was normal in February). Over 2 years in and still just bulbar symptoms. His speech is unintelligible mostly and his swallowing is an issue. He does ok with most food and is actually choking less lately because he is making better choices about what he eats. The problem is he is losing weight, I think because he can't eat enough. It takes him a long time to eat and he doesn't like feeling overfull at night. He's always been a healthy eater so he doesn't get a lot of empty calories, which would be helpful right now!

His weight loss seems to be general, not from a specific body area. And he doesn't have any limb weakness in either his arms or legs. So I'm hoping the weight loss is from not enough calories and not muscle atrophy. Is that possible or am I just fooling myself?

Does anybody have any weight gainer products they recommend for getting extra calories? He tried protein shakes, but they seem to increase his secretions, which keeps him from eating anything else after he has a shake. He is very unexcited about the thought of getting a PEG tub or something like that, so I'm hoping we can find something to keep that from being necessary at least for now.
 

Nikki J

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There are many posts here about high calorie nutrient dense smoothies including non dairy recipes. The search function should pull up many threads

weight loss is a common problem in mnd. What you are seeing is probably not true atrophy but weight loss involves muscle loss.

if he has not had his breathing checked he should. if his breathing is impacted even if it is just a night time issue he could be burning large amounts of calories that way in which case bipap could help.

if he can’t get enough calories in you may indeed have to consider a feeding tube. It would save energy and allow adequate nutrition. While he is able to swallow safely he could still eat for fun as much as he wanted and supplement With tube feeding. He would have more energy both from the nutrition and the energy saving. A feeding tube can actually make life better for both of you.
 

rmt

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He hasn't had his breathing checked since last July, when his FVC was 107%. Since it was so good then, and he wasn't having any self-reported breathing issues they didn't bother to check it in February or July this year. We have a telemedicine visit with the VA ALS clinic later this month, so I'll ask if we can come in for a breathing check. He says his breathing is fine, but he is pretty stoic so who knows how it really feels! And I'll search for weight gaining recipes. Thanks for the advice!
 

Wilson2009

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I would respectfully suggest that your husband reconsider getting a feeding tube as soon as possible. Like your husband, I mainly have bulbar symptoms that have steadily progressed for a little over four years now. I started this journey weighing 250 pounds (okay, I was overweight a tad). By the time of my formal diagnosis, I had lost 50 lbs. Eating a meal was physically exhausting and caused a lot of anxiety for my wife and myself. I was encouraged to get a feeding tube during my first clinic. By the time the tube was placed less than 30 days after diagnosis, I had dropped another 10 pounds. After the tube was placed, my weight stabilized. I have maintained my current weight for 3.5 years now. Placing the tube has made my life so much easier. Remember the tube not only supports nutrition intake but the delivery of medicine as well

Like your husband, my care and support are provided by the VA. They provide everything to support tube feeding from the food itself to the split gauze pads for the tube button.
 

swalker

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If you have not already done so, be sure to work with a swallowing therapist (in the US typically a speech therapist that specializes in swallowing issues). There are techniques that can make swallowing easier and reduce the likelihood of aspiration.

I found that I needed to increase my calories while making things easier to swallow. For me, fat was a key ingredient. For years I had tried to reduce the fat in my diet. Now, I seek out fat!

In particular, I find that homemade mayonnaise is tasty, lubricates the food so it slides down more easily, and is very high in calories.

I have always enjoyed ice cream. Now I enjoy it in larger quantities.

I also find that carbonated beverages are easier for me to swallow. My swallowing therapist said in her experience that is the case for about half her patients. I don't particularly care for the syrupy sweetness of most sodas, but now I drink them anyway.

Leading up to diagnosis I lost 70 pounds. I have been able to gain 15 pounds back and have maintained that weight for almost a year now.

Steve
 
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rmt

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I really want him to consider getting a feeding tube. If it were up to me, he would already have one! But alas, here we are. I'm hoping the televisit with the VA ALS clinic can help him see what a good choice it would be and how it would make thing SO much easier. And we have an in-person appointment with the swallowing clinic in a few weeks so hopefully that will give us some good info too.

Thanks for all your input and suggestions. I'm going to start recommending more high fat foods. And for him to have a second helping of ice cream!
 

Nikki J

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For what it is worth my sister resisted the recommendation for a feeding tube for a long time. After she had it she was glad she had it and wished she had done it the first time the doctor mentioned it.
 
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rmt

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I have a feeling if my husband ever gets one, that will be his thoughts too. I really hope he will consider it seriously and realize that it would be a good thing.
 

KimT

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The last thing I want for your husband is to have him aspirate and get pneumonia. The feeding tube will solve all his issues and he can then eat what he enjoys without worrying about further weight loss. I think this is so important, especially since his overall functioning is so good. The procedure would be easy and, given his mobility and breathing, he would quickly recover.
 
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rmt

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That's my worry too. I think it is so hard for him to accept that this is all happening.
 

lgelb

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I'm going to be a little contrarian here. It would be a bit optimistic to think that a feeding tube will "solve all his issues" and enable him to "eat what he enjoys." Foods that don't go into a tube and are hard to swallow such as leafy produce and coarse grains are out forever.

But if his breathing is good, he can take whatever meds he needs without difficulty, and he can eat enough to regain/keep up his weight with lavish supplementation of the high-calorie foods like nut butters, high-fat dairy, eggs, canned fruits, etc. then you would have more time to discuss the tube without his feeling pressured. And, as you say, the clinic will provide more insight, but it's still his choice.

But I would definitely amp up the doable calories because weight loss is not good. Protein shakes have a lot of artificial ingredients/complex processing, generally. By using natural food smoothies, you can control the ingredients and hopefully find a blend that doesn't aggravate his secretions. For example, you can avoid dairy entirely if you need to, with nut milks or oat milk (I consider Oatly the best), along with raw or soft eggs, smooth mashed potatoes, nut butters, pureed meats, fish, dairy-free puddings, skinless/canned fruits, etc. There is nothing wrong with regular fruit juices or applesauce as a base, either -- just not citrus. Chilling a concoction with crushed ice can make it more palatable. Steve's mayo, butter, olive oil, his favorite jelly, etc. can be thrown in strategically.

If he doesn't like eating too much at night, the tradeoff to articulate is that he has to be religious about calories throughout the day. Also, I would mix something that works well with a wide bendy plastic or stainless steel straw and try that to encourage all-day "eating" along with dishes that require a utensil at mealtime.

Best,
Laurie
 
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rmt

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Thanks so much for your input Laurie. We had a great talk last night about how he needs to really make it a mission to get as many calories in a day as possible. We got some higher fat versions of things he usually has non-fat version of (yogurt, milk, cottage cheese) so hopefully that will help. And he is keeping a shake he made in the fridge and plans to drink it all day long. We really like that idea. Hopefully he can regain some weight and keep it on so we have more time to think about future options.
 

Trixie80

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i eat avacados, boost pudding, lost of sauces, butter, cream and full fat everything. I also puree sweet potatoes with butter, cauliflower with cream cheese and that makes it easier for me to get more food in me easier so I can use my energy to eat other yummy foods.
I eat mayo on everything. cake, pie and lots of fruit. No skins.
I eat croissants instead of bread. A bonus for me Because I love them

all my life i avoided these foods and now I have to eat them.
 
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swalker

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The practical reality is he may have difficulty gaining weight even with an increase in calories. But perhaps he can halt or at least decrease the rate of weight loss. Either of those outcomes would be a positive.

Steve
 
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rmt

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My husband is fully embracing your suggestions for higher fat foods! So far this week he's had full fat yogurt, cheesecake, cinnamon rolls and he's putting peanut butter on PopTarts (instead of bread) at breakfast. He is so happy to have a plan for trying to gain or at least maintain weight. And he seems to be enjoying eating again! Thanks for all your ideas!

And meanwhile, I'm over here trying to lose a few pounds. Life is funny. 😋
 
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