How Fast can ALS Progress?

[Ellamay]

My hubby was diagnosised Nov 20th ... He has progressed rapidly and consistant with no remission. Our ALS team at GF Strong indicates that the rate of progression will continue.
July 2008 we were at Disneyland having a wonderful time it was during that trip that we realised that something was really wrong. He ended up in the hospital in September (took that long to see a specialist) and Nov 20, 2008 he had his diagnosis. 7 months later he has a feeding tube and cannot speak hardly at all. He told me yesterday that he won't be walking much longer. His hands and arms have atrophied and his legs aren't strong enough to support his weight and he only weighs 130 lbs. Everyone we know is shocked at the rate of progression and we find it hard to catch our breath........ oh my husband is 42 years old.

 

[rocmg]

ellamay... i just read your post and i'm sincerely sorry about your husband's very quick progression. als is a bitter pill to swallow at the best of times -- and particularly in someone so young. i hope he plateaus soon. take care and god bless.

 

[Ellamay]

Thanks Rocmg,, We do our best and try to laugh as much as possible.

 

[rose]

topsfan...

I started out with the nasal pillow style mask, and it did not fit me properly, lots of leaking air and it also hurt my nose (from tightening it so much trying to obtain a good seal). Out of frustration, I decided there had to be a better way and started my own search for a mask.

There is an online cpap supply store that has a face measuring calculator, where you input easy to take facial measurements, and it gives you mask choices that should fit you well. I ended up purchasing a nasal mask, it covers my nose, but not my mouth. (the Fisher Paykel "Flexifit 406 Petite Nasal Mask) I'm very happy with it, no gaps at all ~ it seals easily and completely. The only problem I had initially was my nose itching during the night, and of course not being able to touch it to scratch it, but that problem has mostly passed.

I feel that the home care service provider's respiratory therapist should have been much more proactive in giving me a mask that fit me from the beginning, instead of me having to purchase my own, but having it fit has made it well worth it. The latest RA that came out to see me (a different guy) made note of the make and model number of what I'd bought for myself, and said that when it was time for a replacement mask, that they would make sure they had that particular mask for me, which I really appreciated.

There is a photo of me in this mask in the "bipap hose insulator" album on my member profile page, if you're interested in seeing how it looks on a person. I don't think that the store I bought it from had an example of it being worn, just a photo of the mask. I don't know what hairstyle your mom wears, but the headgear isn't too awfully hard on my hair, I put in on over my head all the way down around my neck, (like one would a t turtleneck sweater) and then just pull it back up into place. Every so often I wake up with a really wild looking "antenna," but I've been told this only adds to my morning charm 8)

The only drawback I've found is that so far I haven't figured out how to wear my bifocals with it on, I wear contacts during the day, and used to read in bed at night with my glasses on, its mostly that I haven't tried to get inventive enough yet, I think...

 

[topsfan]

Hello everyone, We had my mother back to Georgetown Univ. yesterday for another EMG and the results verified ALS as her diagnosis. We can see a marked difference in her even within the past week. Laying down to sleep is an issue, and we mentioned it while there and were told about possibly being able to obtain a hospital/adjustable bed via the MDA loan closet. Have any of you utilized te loan closet and how did you make that contact?

Mary

 

[puddycat]

The loan closets are great! We just talked with our ALS Chapter here in Phoenix and they are lending us a bunch of equipment. Talk to your ALS chapter or MDA chapter. You would be surprised what they have!

Tanya

 

[Al]

Hi Mary. Go to www.alsa.org and click on In Your Community and put in your postal code to find the nearest chapter. Give them a call and they'll start the process for you.

AL.

 

[BethU]

Mary, I just e-mailed ALSA, and they sent a rep out, and she came bearing gifts, including my Light/Writer which I use constantly. She's also provided a Rollator walker from the loan closet, a potty chair (will need it someday, I'm sure) and other odds and ends.

I made e-mail contact with MDA also ... the ALSA rep provided the contact information. MDA set me up with clinic visits, and meet with me on each visit.

It is astonishing the goodness in people. All we ever hear about are the people making trouble in the world, but my ALSA rep especially has gone way, way, way beyond the call of duty to help.

Good luck.