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Hi everyone.

I am new to the Forum and am wondering about whether extreme fatigue is normal in PALS. My husband was Dx in 9/08 (Bulbar Onset), and he has been on Rilutek ever since. His decline has been slow and steady...with increasing fatigue, muscle soreness, etc. However, beginning only a few weeks ago, his fatigue has surprisingly increased (he is "resting" in bed most of the day) and his weight is dropping fast.

Chewing/swallowing are becoming more difficult, but so far he is refusing a PEG (while "researving the right to change his mind"). I am concerned about this drastic/noticable sudden weight loss and fatigue. I understand that the disease can speed up at any time, but does this seem especially concerning? Our next clinic visit is September 10 and I suspect the staff will recognize/address these issues, but I am worried about what this means for his disease progression. It seems he has entered what is described as "Middle Stage ALS." I am struggling to come to terms with this development and the obvious implications. I feel as though we have been jarred out of some "semi-denial" because we had settled into an emotional coping "rythym" of expecting slow and steady decline, and suddenly all hell is breaking loose before my eyes. I guess I am just venting, but I am suddenly very scared.

Thanks for listening.
kojena, welcome to the forum. I seems to me to be quite simple, difficulty eating and drinking = lack of energy and fatigue. There is no question in my mind that if your husband was to get a PEG tube he would feel MUCH better and have more energy and less fatigue. I've said it before and I'll keep on saying it, don't fight the tube. Like BethU has said, it is the single most effective treatment that there is in fighting this disease, especially for us bulbar types.
Thanks, Barry. I hope my husband has a change of heart about the PEG...and soon.
Kojena... maybe you could find him some non-ALS info online about the link between hydration/nutrition and energy? That might convince him that the PEG could give him a fairly quick turn around to feeling more like himself, while not focusing quite as much on the disease.... just pointing out that EVERYONE needs nourishment, and he just happens to need to take the scenic route to get there.
In addition to hydration and nutrition, breathing is a big issue. Has his pulmonary function been checked recently. They'll do this before scheduling the PEG tube surgery. My husband hit a period with unexplained fatigue...he was borderline for Bi-pap but Dr. prescribed it husband used it only when he slept (nighttime or nap) and it helped.
My Dad had an increase in energy after he started using his bipap at night and had his PEG placed. Hopefully you can get the ALS Clinic team to talk about nutrition and pulm function at the visit on Thurs and review the options with you and your husband.

Hello! This is our first time we have written on this forum. My husband was diagnosed with Bulbar onset ALS in February of 2009. He recently began using a CPAP machine during the night to help him sleep better. He is also on a sleeping aid medication. He sleeps for 9 - 10 hours every night, but it takes him a couple of hours to get going when he awakens in the morning. He used to have some good hours between 10 am and 5 pm when he would begin to really wear down. Now, it takes him until about 11 am to get going and he is fatigued by about 3 pm. He is still able to eat, but only soft foods and his speech is slowly deteriorating. We are wondering if the fatigue is something that is to be expected? :?: He also is finding that he has more and more high anxiety and is easily frustrated with every day situations. Ray and Karla
Welcome to the forum glad you found are family here. Bi-pap is more helpful with ALS. Did your husband's neuro mention that at all? I think fatigue is something we all experience with Motor neuron diseases, but I think the bi-pap might surely help relieve some of that. Is your husband on any kind of anti-anxiety medicine? emotional issues come with the neuo issues he is facing, they are real and are a part of the disease process. Do you guys attend a ALS Clinic?
Hello Ray and Karla, welcome to the forum. I am wondering if some of the fatigue is caused by not being able to eat. I know that without my peg tube I wouldn't still be here and that before I got it I had no energy to do anything.
Hi Ray & Karla,

Was the CPAP recommended by the neuro ?

I had 7 years of CPAP usage (sleep apnea) before I was diagnosed with ALS. I was soon put on a BiPap.

That is the way to go.

Your husband , while sleeping , has to work at getting his breath out against the constant pressure of the Cpap. This could be contributing to his fatigue. I noticed a big change once I switched. I cant promise the same for Ray , but I would call your doctor about it.

Also, if he is having problems eating , look into the PEG. It only makes sense to get this early , before you really need it, to maintain the weight.

Hope this helps.

Welcome to the forum. I agree with what has already been said. I experienced what you describe and it was because of how much effort I was expending to breathe. It never got better until I got my trache and vent. I can't believe what a difference I experienced once I was not expending all my energy just to breathe. But a bipap is definitely the correct machine for anyone with ALS.
Thank you to all who responded so quickly. A pulmonologist prescribed the CPAP, we didn't know there was something called a BiPap. We have had to change neurologists recently because of Ray being able to go on Medicare - so have an appointment with the new neurologist on Wednesday this week. We will ask about a BiPap. Also, from the discussion we presume that a PEG is the feeding tube? We will also discuss that with him - we knew that was coming at some point in time, but had no idea it could be this soon. We have not hooked into an ALS suport groupsas yet, we live in a small town and am not sure if there is one here. Thank you all so much - it is so nice to be able to talk to others who are dealing with this; and we are so sorry that you are in this situation too. Thanks, Ray and Karla
Hi Ray & Karla! I know there is a fantastic ALS Clinic in Rapid City, South Dakota. Contact the ALS Association and the MDA-wonderful support and assistance. Please know how sorry I am to hear that you have been given this diagnosed. You will Thank God every day that you found this wonderful little forum spot in the internet world. My Husband was diagnosed July 09 and we are looking at a PEG the first week of December. Our experience is that I have had to demand the treatment that he needs from the ALS Neurologist-so I fired her and we use our local Dr. He writes the consults and off we go. :] We also live in a tiny little town and it was a 2 1/2 hour drive one way to go to the ALS Clinic, now we can be to the Dr. in less than 5 minutes. Our Dr. is our family Dr. and will do anything to help us that will improve the quality of Web's life and that of our Family. That is a definate PLUS. He will also come to the house when Web is not able to leave due to immobility. As everyone has said, he needs BiPap! Web is on Paxil to deal with his anxiety and depression and it is very effective. He takes Ambian to help him sleep. We added Robinol to help with his secretions at night and now he is sleeping well! We are all here for you guys!
um... pretty much ditto, ditto and ditto. Glen has been using the trial BiPAP for about a week now and is getting much more restful sleep. I'm hoping when we go back tomorrow they will have one available and we won't have to wait for the "permanent" machine. He also takes celexa for depression, and tamazapan for sleep/anxiety. Getting him started on anxiety meds actually helped his energy level. Glen should be on a feeding tube, but thus far is refusing. One thing we ran into was he was dehydrating. Once I started thickening his liquids so he could drink them safely, he gained 3 pounds almost immediately! Ensure, pudding, mashed potatoes with lots of butter and cream... all are things that will help with energy. Glen also takes a nap most afternoons, which gives him a little energy boost for the evening. Sorry you have to be here.. but so glad you found us!
We are trying to get Provigil for my husband. The generic name is modafinil. Another one I have investigated is amantadine. His tank runs low, and it takes longer and longer to refill it. HUGS Lori
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