I have been reading lots of material concerning pegs? Will I also have to get this since I have ALS. Is this something that happens to everyone with ALS? I have so many questions. Just don't know how to type them all down. I just found out I have ALS in January, although, I think I have had it much longer then January. Since my walking was getting so difficult and all they told me was I had to shed some pounds and exercise more. Wish that's all it was. I do appreciate the information I receive. I am just concerned because when I read I wonder if all these same things will also happen to me.

Hi,

I am very concerned over the information that you received that you need to exercise more. ALS is so different from any other illness. True- it is important that your different body parts be worked so they don't become too stiff, but please be careful with certain types of exercise- especially any type of lifting weights. See- when you life weights, the purpose is to break down that muscle and allow it to grow. Any type of muscle loss in ALS- does not regenerate so you will actually lose muscle.
As far as getting a peg. It is true with this illness that most people lose the ability to effectively swallow resulting in some scary choking episodes. Depending on if ALS reaches the respiratory muscles before the swallowing ones, then this may not happen-- but this is not the norm.
At the first sign of there being any type of swallowing problems or tiring when eating and not being able to get enough calories in, then I would greatly suggest getting a PEG (feeding tube). Doing this in time- will help you stay stronger- longer. My Mom was very hesistant of this and she wasting down to less than 100 pounds. By the time she did get the feeding tube- it was just not enough. Please know that if you still can eat but just can't eat enough to sustain- then you can use the peg feeding as a supplement. When you get a peg, it doesn't mean that you can not eat anymore. This was one of my Moms greatest fears. She was still able to eat some after getting the Peg tube. It was also great in that we could use it to put all of her medications into - which she just could not swallow effectively anymore without getting choked.
Stay proactive with this disease. Learn as much as you can from other people and families who have dealt with this disease. It is greatly frustrating at the lack of knowledge out there in the healthcare industry regarding this disease. Most doctors don't like to even deal with this affliction. If they don't have an cure or a fix it- then they don't even focus on what they can do to help improve a patients quality of life.


My prayers are with you.

Hi,

I am very concerned over the information that you received that you need to exercise more. ALS is so different from any other illness. True- it is important that your different body parts be worked so they don't become too stiff, but please be careful with certain types of exercise- especially any type of lifting weights. See- when you life weights, the purpose is to break down that muscle and allow it to grow. Any type of muscle loss in ALS- does not regenerate so you will actually lose muscle.
As far as getting a peg. It is true with this illness that most people lose the ability to effectively swallow resulting in some scary choking episodes. Depending on if ALS reaches the respiratory muscles before the swallowing ones, then this may not happen-- but this is not the norm.
At the first sign of there being any type of swallowing problems or tiring when eating and not being able to get enough calories in, then I would greatly suggest getting a PEG (feeding tube). Doing this in time- will help you stay stronger- longer. My Mom was very hesistant of this and she wasting down to less than 100 pounds. By the time she did get the feeding tube- it was just not enough. Please know that if you still can eat but just can't eat enough to sustain- then you can use the peg feeding as a supplement. When you get a peg, it doesn't mean that you can not eat anymore. This was one of my Moms greatest fears. She was still able to eat some after getting the Peg tube. It was also great in that we could use it to put all of her medications into - which she just could not swallow effectively anymore without getting choked.
Stay proactive with this disease. Learn as much as you can from other people and families who have dealt with this disease. It is greatly frustrating at the lack of knowledge out there in the healthcare industry regarding this disease. Most doctors don't like to even deal with this affliction. If they don't have an cure or a fix it- then they don't even focus on what they can do to help improve a patients quality of life.


My prayers are with you.

Thank you so much, I do appreciate you taking time to answer my questions. Your right not much information has been given to me. My doctor told me I have ALS and then I go back every three months. Right now I am just riding a bike, but it's low to the floor and holds up my back. Then I just do a few exercises with my arms and a stretch exercise with one leg. Thank you so much for prayers. I do know that prayers help us all. I have so many questions but just don't know how to write them all. That's why I am thankful for this board, and the kind people that have helped by answering my threads.

I think most people with als do get a feeding tube at some point,most wish they had had it put in sooner. The benefits are: ability to take in enough nutrition to maintain weight;you won't be trying to swallow and choke ;water can be the hardest thing to swallow,with the tube you will be able to take in enough to prevent dehydration;prevents a bit of food getting into the lung and causing pneumonia;some meds come in liquid form others can be finely crushed and flushed down the tube. The procedure is fairly simple however the sooner you have it put in the better as you don't want to wait til your breathing is compromised . One man recently posted that he went to his Dr for a checkup and the Dr noticed his weight lose and set him up for a feeding tube that afternoon,the man was home the same day and doing fine.I think most PALS stay overnight though and the staff sets up a schedule for his feedings,how much and how often he should be fed. They should also instruct you on the care of the tube and the skin around it,tell you about flushing the tube with water after feedings to prevent clogs.Find out when it should be changed to a new tube etc. This sounds like a lot but it is very simple,you just need to know what to do. I was a care giver to my brother in law through his six years with ALS,my sister and I learned everything about his care.Another board you might get a lot of info on is living-with-als@***********.com

I think most people with als do get a feeding tube at some point,most wish they had had it put in sooner. The benefits are: ability to take in enough nutrition to maintain weight;you won't be trying to swallow and choke ;water can be the hardest thing to swallow,with the tube you will be able to take in enough to prevent dehydration;prevents a bit of food getting into the lung and causing pneumonia;some meds come in liquid form others can be finely crushed and flushed down the tube. The procedure is fairly simple however the sooner you have it put in the better as you don't want to wait til your breathing is compromised . One man recently posted that he went to his Dr for a checkup and the Dr noticed his weight lose and set him up for a feeding tube that afternoon,the man was home the same day and doing fine.I think most PALS stay overnight though and the staff sets up a schedule for his feedings,how much and how often he should be fed. They should also instruct you on the care of the tube and the skin around it,tell you about flushing the tube with water after feedings to prevent clogs.Find out when it should be changed to a new tube etc. This sounds like a lot but it is very simple,you just need to know what to do. I was a care giver to my brother in law through his six years with ALS,my sister and I learned everything about his care.Another board you might get a lot of info on is living-with-als@***********.com

Thank you for all your help. I am so new to ALS and sometimes it just gets the best of me. I don't want to be frightened but sometimes I am. Just never thought I would hear these words, but, I did and now I am so thankful for all the kind people that have helped give me information and have all been so brave. I am glad I have somewhere to go and not just talking with the nurse or doctor. I just have to take each day as it comes.