New Here - husband has ALS

I am new to the forums. My husband has been diagnosed with upper motor neuron dominant ALS. His symptoms started in July 2009 with slurred speech. His neurologist diagnosed him with PLS because there was no lower motor-neuron involvement. In March of this year his diagnosis changed to ALS. He is the 3rd person in his family to have ALS (father and sister as well). So far the only symptoms are his speech and some swallowing issues. He eats a regular diet and consumes between 2500 and 3000 calories per day but is losing some weight. The staff at our ALS Clinic have mentioned a feeding tube but my husband does not want to consider it. I feel like eating is becoming a struggle for him and don't know what to do about it. His doctor has told him that his ALS is very slow progressing. Up until a few weeks ago my husband was lifting hundreds of pounds of weight at the gym. He's taken a break because he developed a cough that we think if caused by spasms in his throat. He says that he wants to go back to the gym.

ALS has always been hanging over our heads because of his family history but now it is like a bad dream come true. I am doing the best I can but there are many days when I don't feel like I am doing a good job.


Anne.

I am sorry to hear of your husband's problems and his family members. I am sure you are doing an excellent job. It is really hard to not feel the way you are but please don't be too hard on yourself. We are here for you and will try to support you however we can! Welcome to our forum family!
Please jump right in and vent or ask questions.

Welcome, Anne! I'm sorry to hear about your husband. I can not imagine what it would be like to have so many family members dealing with ALS. My husband's only regret about getting his feeding tube is that he waited as long as he did. The doctor would only give him low doses of pain meds because his breathing was so low by the time he had it done. Please let your husband know that if he plans on getting a feeding tube at any time, sooner is better! He can get the "good pain meds" and still continue eating when he wants to.
Stephie

My Mom has ALS and has a feeding tube. She was hesitant at first, but soon grew tired of aspirating 100% of the time when she tried to eat. Her weight got down to 120 lbs. and since the feeding tube was installed... it has plateaued.

One of our very first visits with her doctor after her diagnosis she was told this:

"There are two ways you can die from ALS: 1) Starvation or 2) Suffocation. Option 1) is a long and very painful process and Option 2) will probably happen in your sleep... you'll go to bed one time and just never wake up."

I know that sounds harsh... and it was... it was like a baseball bat to the gut... but as it turned out... it was the best advice we got.

Sometimes tough love is the best kind.

Good luck.

The word "suffocation" might be a bit harsh and/or scary. We were told that CO2 levels would increase causing my husband to sleep more and more. One day he just wouldn't wake up. I do agree that starvation sounds horrible. My husband is getting a PEG put in next week.

I don't think it's a good idea for your husband to continue with his usual routine at the gym.

It may also be a good idea to try and minimize stress levels. When I get stressed, my symptoms kick into high gear!

Kim, So true, The "Use it or lose it" does not work with ALS. A feeding tube will allow him to get his nutritional needs from the PEG, and eat for enjoyment. Remember a high fat, high cholesterol diet is a GOOD thing. HUGS Lori

Thanks for all of the advice. Every time I try to talk to my husband about the feeding tube we end up in a disagreement. We are going back to the ALS clinic in a couple of weeks for a team visit and I'm sure someone there is going to talk to him about it. In terms of his weightlifting -- the doctor supports his weightlifting if he can keep up with the amount of calories that he is burning. That's the challenge that we have right now. Weightlifting has been good for him psychologically.

Again thanks for all of the support. It's good to find a place like this where people understand. My husband's family understands all of this too well which makes me very sad.

Anne.

No one here will agree with your doctor supporting weight lifting. We have all been told the opposite and from experience I can tell you that weight lifting, or any vigorous exercise, is detrimental for PALS.

Please be very careful.

Can someone explain what the problem is with weight lifting? and I apologize if this is a silly question but obviously I need to be educated about this.



Thanks.

The problem with any exercise, especially weight lifting, is if any damage is done to the muscle it does not heal. Weight lifting tears the muscle and when it heals it is stronger, but with ALS it will not heal so it significantly speeds up the downward spiral.

Thanks for the explanation. My husband has taken a hiatus from the gym anyway so it's not really an issue right now although he said that he does want to go back. I'm going to talk to his medical team about this. Thanks again.

ROM exercise is good. If his breathing/diaphragm is good, then pool exercise is OK, as far as I know. My husband said it helped him relax, but eventually the pressure on his diaphragm got to him and he could no longer go to the ocean or a pool to swim.

Sounds like your husband must be "buff," so he will need to learn to up his intake of "bad" calories to keep the weight on and he probably won't like it if he's used to eating high protein, etc...

Very sorry about your husband and his family!

My husband has always had a problem gaining weight and maintaning weight. He is in very good physical condition. His last pulmonary test was 99%. He has no muscle weakness in his arms or legs. But I am listening to what has been said about weight lifting and am taking it seriously. I do appreciate all of the advice.

Anne.

If ALS has not affected his arms yet he might get away with it for awhile but there will be a day where it will do irrepairable damage. I would not take the chance.