husband diagnosis

[muptigrove]

My husband was diagnosis with ALS yesterday, we are still in shock, next week we go the the ALS clinic in Huntsvill, Alabama and there they said they will help him with what ever he needs, hopefully he will be getting the breathing machine (bipap) i believe its called and maybe that will help him sleep better at night

 

[brooksea]

Yes, it is a BiPap. Please encourage him to use it as much as possible and elevate his head.

Sorry about the d x.

 

[muptigrove]

so sorry your husband passed but I am sure he is in a better place, my husband is 65 and i am 8 years younger and i can already tell this has aged me

 

[momap53]

So sorry for your husband's diagnosis. You're so right. ALS takes a toll on the CALS as well.

I've been fortunate to attend an ALS Clinic where the staff have been very responsive to my needs as they arise. Be sure to get phone# and email addresses for each discipline so that you can contact each specialty if needed between Clinic visits. We go every three months. It's a lot to take in all at once so be sure to bring a binder for any handouts and a list of all your most pertinant questions. Don't forget to ask about any upcoming Clinical Trials that may be conducted at your site. Sometimes the window of opportunity for participating is very narrow.

Many have reported improved sleep with the BiPap. I used mine initially for a few hours in the daytime while watching a movie or reading in my recliner. His RT should give him the opportunity to try several mask styles to get a good fit.

 

[panguinjen]

Deb is right about the mask! We have had problems because the mask was wrong...

Jen

 

[KrisS]

I am sorry for his diagnosis. You may want to try an over-the-counter medication to help him sleep. My husband origionally took sleep-aid tabs after diagnosis and now takes a dose of night time cold medication before bed every night. For him these work better than the anti-depressants the dr. had him try. The ones I have suggested are not addictive, so there is no harm in taking them daily. Good luck.
Kris

 

[muptigrove]

Thanks Kris I will get some of the sleep aid for him, we were just out in Colorado last month, our son lives in Denver, what a beautiful state

 

[KrisS]

Sometimes it does seem like a small world. Yes, it is beautiful here in Colorado.
If needed, you can crush the pills as long as you don't get the gel-caps. I hope it helps.
Kris

 

[cervus]

Sorry about your husband's diagnosis. To add to CJ's, Deb's and Jen's comments I would also suggest contacting your local ALS Society. Take care. Yasmin.

 

[notme]

Do contact your local ALS assoc. for any help. If he's having breathing issues now, perhaps they can get him evaluated soon. Even a GP can do a pulmonary referral for PFT tests and sleep study while you're waiting.

There ismromsmof great info here. He will be approved for SSDI if he's got the work credits. Medicare kicks in at the same ri,e the checks do (5momths) after he stops working. ALS is also considered military related if he was active duty in any of the armed forces.

I'd suggest you sit with the ALS assoc rep and discuss what aids might be needed in the neat future, and start getting them and learning their use before they are needed.

Most ALS loaner closets have lots available if $ is an issue.

Sorry to sound morbid, but ot does let one feel as though they have some control if they can be proactive early.

Last tip.vthere are lots,of trials going on. Ask about them, and live each day to its fullest. Hugs and welcome to the forum people here will answer any questions you might have.

 

[Sharks1967]

So sorry to hear of your husbands diagnosis. I'm only new to the forum myself but it's been a great help.
Good luck with everything.
Danny

 

[KissJ]

So sorry. My husband's diagnosis was very difficult for both of us. Nothing is easy with this monster, but we got out and did a lot of things before he got worse. This summer included two cruises in the Caribbean. Anti-depressants have helped us a great deal. Is he a veteran? There are benefits! God Bless!