Burning Calories

[Labinma]

My PALS so far has refused a feeding tube. His weight has gone down considerably. He talks about he is burning up to 30% more calories a day then the average person. He has started eating shakes and states he has cashews and other good fats at work. I guess I am wondering, even with these food additions that he is fortunately able to consume right now, if he refuses a feeding tube, how long can he maintain? Another way put, if he is burning 30% more calories a day, declines feeding tube, how long does this sustain? Does the 30% increase over time? All I have read is ALS patients burn 15% more calories then average person. Is his 30% in a different category due to his state currently. (Lost considerable weight, slurred speech, motor movements labored, drop foot, upper body shutting down etc).
Thank you. Sorry if portions are repetitive and redundant.

 

[Firefighter58]

As I have said many time on this site, I have a tube and find it very satisfactory. It is very low maintenance, no one else can tell you have it and it is highly convenient for maintaining weight. It is also good for meds and vitamins. One of the problems that your Pals could face is waking up one morning and not being able to eat, rare but with this disease you never know. Always best to plan ahead and make life as best as you can,and as worry free as possible. There are also many drinks you can buy that are designed to help maintain weight. In Canada we can get them through the ALS society free, they are normally expensive so check with your society branch.

Al

 

[Nikki J]

No one can tell you how long. If his swallow is adequate and he keeps up with high calorie foods he can manage indefinitely. But if swallow gets worse and/ or he gets too tired to make such an effort that will change. Also, respiratory issues, especially at night, can contribute to hyper metabolism. If he is working hard all night to breathe he would be burning a ton of calories

 

[KimT]

What is his FVC? Getting a tube before he needs it will give him time to adapt to it, heal completely, and still enjoy the food he likes while testing various feeding formulas to see which one(s) agree with him.

In the meantime, if he wants to gain, I ate a quart of high quality ice cream every day and that added 1,000 calories. Nut butters in an ice cream shake, along with some coconut oil can easily add 1,000 calories or more.

Pureed soup with avocados can be done in a Vitamix and that can be made very healthy as well as calorie dense.

How long? That depends entirely on his ability and willingness to eat. Some PALS struggle with eating because it's so tiring and others simply cannot use their tongues to move food around or swallow properly so eating becomes both dangerous and labor intensive. I go to lunch with a PALS who refuses a tube and it takes him over two hours to eat half a meal.

 

[Labinma]

Thank you all for the insight and suggestions.
Grateful for you all,
Lisa

 

[Manhattanite]

Labinma I am curious as to why you are asking. Is it because your PALS is refusing a PEG and you want arguments to present to him to convince him to get one? Or because you want to know what type of timeline you are facing as a CALS?

 

[Labinma]

Hi, its me as a CALS trying to understand 1. Is the rate of 30% more calories being exhausted then average person the norm? ( I have heard 15%). 2. Yes, how long can a PALS sustain this if a PEG is refused? What happens? What should I prepare myself for? If he still eats and uptakes high calorie food that he claims he is doing but no signs of weight gain, can it continue for a long time, or will the burning of calories continue/increase and he will not sustain? The phrase "failure to thrive" was mentioned at his last clinical visit when it was strongly suggested he consider a PEG in the next three months. Does that mean, his weight could get so low, that there is no returning regardless of a PEG insert or not?

Being a CALS trying to honor a PALS course for this disease can be the most bewildering, frustrating and sadly curious thing one can think of. This disease has no set timeframes, or provided predictable series of events. I have two young daughters. When and how do I explain to them Daddy has a non-reversalable disease? Do I wait until Daddy has another significant change, outside of the atrophy and slurring and other bodily changes? What the hell do you do when you know your PALS refuses a PEG and tells you he is always hungry (stomach growls at night) and tells you he knows he is burning 30% more calories a day then the average person. What do I do with that info, those responses? All I can do is control my life, and therefore, yes, sadly the thoughts go to.....how long is it going to be like this? What is going to happen? How can I be prepared for my girls and myself when he wont discuss the future, or talk to me about the state of our home/assets secured/wills/proxy? I cant bring any of that up. How is it that our TV gets cut off cause the bill is late, yet I look out the window at a shrink wrapped beautiful boat? How do you navigate that? Anti-depressents and sleeping pills really are the only things I have. I am sorry for the strong unload. Thanks for asking I guess.

 

[Labinma]

As follow up, I have strongly suggested all of the above precautions (suggested non invasive PEG at least 4-6 months ago, suggested meds, food, shakes, and more. Even before this inquired about us trading in our cars for a mini van (that I knew we could attach a hydrolic lift). I have gone so far as suggesting we down size and sell our current house for something smaller (the though of a ranch in mind) where I could maintain the mortgage if it came to that. So he could live and thrive as long as possible. I am a planner, a take action individual dealing with the opposite type of person. I get hung up on when mention some of these, I get "I am all set" about a feeding tube and finally the best response: Jesus "you already have me in the grave". BIG Ouch.

 

[Labinma]

Finally, with tears in my eyes, it hurts when you can't help someone that you love. Bottom line.

 

[Manhattanite]

Thank you for sharing Labinma. This disease is cruel enough and then we have to deal with all of its ramifications. I can't even begin to imagine what it is like for the PALS, but it also takes its toll on us CALS.

 

[affected]

I hear you and feel your pain.

My Chris had bulbar onset ALS and FTD. He was losing weight constantly and no matter what information he was given he would say he would have a peg but he would know when it was time. He was emaciated and dehydrated when he finally said yes and then it was a race to get it organised.

He never adjusted to taking peg feeds, his digestion had slowed too much and he couldn't work to a plan with his FTD so he kept refusing feeds. Yes there is a kind of point of no return where weight loss and slowing of the digestion reaches a point that it isn't reversed. It's unclear just where that point is, but obviously the sooner the better if that is what the PALS wants.

My Chris was getting close to only 100 lbs when he passed - by that point I could no longer weigh him. He would say losing weight was inevitable because of muscle loss.

Losing weight speeds progression because it means they are not getting enough calories for the daily needs of life and the body will take the calories from wherever it can and dying muscles are what the body will consider the choice.

What will happen to your PALS specifically though will possibly be in the range of - lower and lower energy and confusion (low calories and dehydration). If it speeds the progression on his breathing muscles he will pass fairly quickly.

I gave my Chris the information, spoke to doctors and dieticians who also spoke to him, then supported his decisions. It was not easy. BUT this is a terminal disease so it's not like feeding him up was giving us a shot at beating the monster. I feel his quality of life would have been better with more calories, but arguing against him would have severely negated that and reduced his quality of life way further.

So I took the approach this way - it was his body and his disease and it was my job to advocate totally for him to do it is his way. I have never regretted any of it, not a thing.

I didn't have young children at home, but I can still say to you that he has a terminal illness that you are going to have to help them deal with regardless of whether he gets a peg today or not.

I advocate for getting a peg early. But I also advocate for PALS calling the shots on their own body and strategies so long as they have been given the information.

What the actual rate is - 15 or 30% doesn't matter. Yes PALS burn calories faster and the harder breathing is, and the more weight they lose, the faster they burn calories.

How long he can continue is hard to answer, but it won't be years that's for sure.

My Chris had a very peaceful passing, no pain, no fear, at home with me looking after him. He never felt like he was starving to death which is an awful thing some people will say.

I hope that helps a little, I'm truly sorry this is an awful monster and we are helpless to anything except love and support our PALS.

 

[Labinma]

Thank you so much....roller coaster, and this day was one of those days I guess. So I appreciate any feedback out there and thank you sharing and caring. I am now wondering if he is effected by FTD and if it has been the case in last five years. Is it a progressive thing? Starting five years ago, he could get exceptionally angry. We just completely could not agree on a thing or see something the same way. But just recently I specifically noted confusion at a board game we were playing with the girls. I have read a bit about FTD. I wonder if he has this, and how this effects ability to make decisions and function and interaction with others. Can it be in mild or severe form if he did have it? How is one specifically diagnosed for it? I guess I should google it? :0)

 

[affected]

If you click on my name beside my last post and choose to view affected's homepage it will take you to a website and there is a link there to FTD that may help answer your questions.

Definitely it is progressive, and it depends on where and how much of the brain is atrophying as to how severe the symptoms are and what symptoms there are.

My Chris had behavioural variant and moved into a lot of language issues in his last couple of months.

It should never be confused with Alzheimers and in most cases do not have memory issues.

 

[gooseberry]

Hi Labinma, I am so sorry you find yourself in this place. I dont have any particular words of wisdom but I can relate some of what happened with us.

My son was 12 when his dad was diagnosed. We went together for counseling....my pals refused to go. My son and I developed a deep bond and much better communication. I answered his questions honestly but I didnt volunteer a lot of extea information. He ,however, took to the internet and got a much scarier picture of this disease.

My husband was considered respiratory onset which is pretty rare. When he presented, he had significant weight loss, and very shallow breathing. His oxygen sats were 90ish during the day and fell to the 70s at night. The doctor told him he burned enough calories trying to breathe that it was like he ran a marathon each day. This was a big factor in his weight loss at the time. He got a trilogy immediately and this helped stabilize things.

For 6 months before my pals was diagnosed, we would have ugly fights because he was having memory issues. This memory issue and general cognitive function continued to decline through out his disease. The psychologist we saw at Va said a large percentage of ALS patients they see have cognitive changes.

My husband did get a peg tube. He used it less than a dozen times. He wanted it for meds and not for food.

I battled fiercely with myself because I didnt want to accept the decisions he was making. In the end, I realized his disease, his decisions. I did my best to make life work for him but mostly it was very difficult and stressful.

Know we are here for you. Stephanie

 

[Labinma]

Thank you gooseberry and affected So much wisdom shared when one lives to tell the story and is willing to be specific in sharing. It is priceless information, opinion sharing and care. Thank you.