Weight loss in ALS

[Hewitt]

I recently visited my sister, who has had ALS since last December, and I was shocked at the progression over the two-month period since I last saw her. She can no longer walk or talk, her hands are clawed, and her dementia seems to be advancing, but her weight loss seemed especially alarming. She has had a feeding tube inserted and receives several cartons of nutrition support daily, but she is still eating normally as well, and she eats constantly all day. However, she has lost 35 pounds in two months and now weighs a little over 90 pounds. Is there something inherent in the ALS disease process that affects the ability of the body to metabolize food? When I saw her last it took her so long to consume a meal that she had started to lose weight, but they seem to have an easy-to-swallow diet figured out so that she really is taking a lot of high-quality nutrients. It seems terribly concerning that she still continues to lose weight rapidly nonetheless. Is this typical of the advanced stages of the disease?

 

[Nikki J]

There has been research indicating hypermetabolism in a subset of PALS. I know a small female who required 3000 plus calories a day to maintain weight. How many calories is your sister getting? also is she having any gi issues from the formula?

 

[gooseberry]

Also her breathing. The pulmos say when respiration is affected, it is like running a marathon every day.

 

[affected]

Definitely a lot of PALS consume enormous amounts of calories every day for normal bodily functions like breathing and digesting food.

Usually we look at the calorie count and try to greatly increase calories without increasing the bulk amount of food (as digesting it can take more calories than what is contained in the food).

I think of it this way - the amount of calories many PALS are burning just for basic functions can be compared to doing a workout in the gym every morning and evening. It is not apparent, if the PALS seems to be mostly sitting as they are not mobile, it would seem like they shouldn't need a lot of calories.

This next bit is my personal opinion from my own observation of my husband and other PALS I've known locally and through here. If the PALS starts to lose weight early, it is much harder to put weight back on them and keep it on. I suspect that losing weight early changes the metabolism and may be a contributor to the hypermetabolism Nikki mentions. That is purely my musing on things and it could be far more random than that.

It is a fact however that some PALS will lose weight and look like a concentration camp victim and it's heartbreaking.

 

[KateEmerson]

The director of the Mass General ALS Clinic states that anyone with ALS needs 130% of normal caloric intake and that maintaining weight is key.

 

[KW1234]

I am also trying to maintain my weight and am adding things like fish oil to my veggie smoothies, and hemp seeds to my protein shakes in the morning. I have trouble swallowing, which means it takes me a long time to eat/drink, and after taking an hour to an hour and a half to drink a breakfast smoothie, I just don't have the energy or appetite for lunch. I've stemmed the weight loss to about 1 lb a week. Will be discussing a feeding tube at my January clinic. I'm tracking everything I eat and monitoring calories and if I have a light day, I try to follow with a more calorie rich day. Managing this disease is a lot of work.

 

[affected]

KW how many calories are you averaging in a day?

Definitely it seems that if eating takes a long time, you burn a LOT of calories just in the act of eating so it becomes a vicious circle - the more you eat the more you need to eat because you used most of the calories to eat ...

Losing a lb a week is a lot when it is happening weekly. Would you consider trying to get an appt and peg sorted before xmas?

Another thing with getting a peg is being in optimal physical condition that you can manage for the procedure. Another 8 - 10 weeks, another 8 - 10 pounds lost so you are going backwards every single week.

 

[Hewitt]

There has been research indicating hypermetabolism in a subset of PALS. I know a small female who required 3000 plus calories a day to maintain weight. How many calories is your sister getting? also is she having any gi issues from the formula?

Yes, she is having GI issues with the formula, Nikki - lots of gas and discomfort, and that is why her husband limited the amount he gave her for a while. She drinks TONS of kefir, smoothies, and thickened liquids and consumes a lot of fruit, cheese, yogurt and soft foods. She can eat a regular dinner - albeit over several hours, and she eats nuts as if they were going out of style (which astonished me, but she never seems to choke on them). I don't think they have any idea how many calories she is actually consuming, but there were few times during my visit when I didn't see her eating or snacking on something. Fortunately, the progression in so many areas does not seem to be accompanied by any apparent breathing problems, and she has resisted using the BiPaP provided to her because she doesn't feel she needs it. The FTD that hit me almost as hard as the ALS diagnosis has proved to be a silver lining, ironically, because she is only dimly aware of what is happening to her, and while I was visiting she wrote on her white board that she wanted to call her boss and discuss going back to work (this, despite the fact that she can no longer walk, talk, or remember things from one minute to the next). As I watched her husband carry her around the house, bathe her, feed her, change her, and wash her clothes and bedding daily, all without any assistance, it really hit me for the first time what a heavy, heavy burden this is for CALS, above and beyond the despair you must face watching your loved ones cope with this disease. I send out a collective heartfelt hug to everyone struggling with these burdens -

 

[KW1234]

I'm averaging anywhere from 1300 to 1400. The dietician I am working with wants me to get up to 1500, which is a struggle. I have a lot of food issues in general- low glycemic, no dairy, no nuts (except coconut), - basically what I eat is fish, vegetables fruits, eggs, beans, tofu, brown rice, oats, quinoa, seeds and limited amount of wheat. For oils I use coconut, olive and avocado. I take riluzole before bed, but if I try to fit in the second dose during the day, I can't eat anything for 3-4 hours from the nausea and cramps- hence it's a toss up between riluzole and food, and I've been opting for food.

 

[affected]

Hewitt you are right, it is heartbreaking to see the one we love go through this!
If she is constantly snacking and on high calorie items like nuts one would expect her to maintain weight, but obviously not. Her breathing may be far more affected than you suspect or than she realises and maybe she is snacking constantly because of it.


KW I don't know where they got that idea from, you would need 2000 - 2500 calories a day to stop the weight loss and start reversing it and actually putting weight back on.

 

[Duker52]

Sorry to welcome you to our family. However, this is the best place to be with incredibly knowledgeable people.

To up her caloric intake you might want to get Boost Very High Calorie (530 cal in an 8 oz carton) and Benecalorie (330 cal in 1.5 oz carton). Both products are available at Amazon, but not available in stores.

Bill

 

[Hewitt]

Thanks, Kate! Thanks to Nikki, my sister is a patient at the MGH ALS clinic, although she is transitioning to total Hospice care because getting her back and forth to the doctor is so hard. I think they have been working with her to reduce the rate of weight loss, but it seems to be an uphill battle at present. If nothing else, she is eating an extraordinarily healthy diet right now, but that may not be what is actually required to keep weight on.

 

[lgelb]

Yes, I would make sure in her smoothies there are high calorie/still real food elements like nut butters, eggs, protein powder/whey. Sufficient protein is as important as total calories.

 

[KateEmerson]

The MGH ALS clinic has " Virtual Visit " , we have had them with my husbands neurologist. They sent us a link, I downloaded the app on my ipad( with their help), made an appointment with the Dr, and had our visit on my iPad. It was so difficult and exhausting for my husband to go see Doctors in person that we rarely went. Now my husband can see the doctor right at home from his recliner. Awesome!

 

[Hewitt]

What a great idea, Kate! I'll be sure to tell my brother-in-law. Thanks!