Hi i'm new at this .I have had ALS 17 years.

[jonsjr40]

Omar
No have not had any contact with any one till now. I never even been to a support group. I will be your pal.I don't know how did it, I really like talking to pals.Omar ,you can email me any time you want at [email protected]
will gotta go.
John

 

[Omar]

Wow Cindy, then we can discuss about art and maybe have a photography session. By the way are you still working or already quit what about your conditions? did they figure out whether it is ALS related or not?

 

[rvcann]

15 years

I'm Vicki, I've had Als for 15 years. I'm in a wheelchair now, but can still eat, talk, and stand for a few moments.

 

[Icanmanz]

Wow Vicki! That's a long time dear. Is yours the slow progressing type? My son was diagnosed March 29, 2006. Als claimed him on June 3, 2007, 15 months later. Are you taking any medication? God bless you......that is a long time!

 

[brendapals]

Vicki,
Welcome to the forum, and wow, 15 yrs! That's amazing, I just love hearing about those long stretches!
I wish you a blessed Christmas,
brenda

 

[CindyM]

Wow Cindy, then we can discuss about art and maybe have a photography session. By the way are you still working or already quit what about your conditions? did they figure out whether it is ALS related or not?

I am pretty sure I cannot be ALS. One neuro agrees with me it could be MG but he says that is a "notoriously hard disease to diagnose." I seem OK as long as I get plenty of rest and use my bi-pap every night. So I still live my life! And I love photography. I use an old 35mm film camera, which I call my old wooden camera, LOL. But I am saving for a good SLR digital.

Hope all is well, Omar. Are you still in school?

 

[rvcann]

Wow Vicki! That's a long time dear. Is yours the slow progressing type? My son was diagnosed March 29, 2006. Als claimed him on June 3, 2007, 15 months later. Are you taking any medication? God bless you......that is a long time!

Hi, thank you for your interest. I take medication only for pain. Long time ALS patients need medication for nerve pain.

 

[jonsjr40]

Hi Vicki I'm John I'm the one that posted this thread. I think its great your doing so well.
I would like to ask you somethings. It well be 18 years for me soon. You said you have pain I don't have no pain at all I never have I thank God for that. If you don't mined saying how old were you when you got ALS/MND I was 30 when I got it but I was 31 when DX I really would like to talk to you some time. I cant eat anymore its been 2 years and six months. I can stand for a little bit I can talk to people that's been around me. If you want to you can email me at ( [email protected] ) Thank you.
GOD BLESS YOU
John:lol::lol:

 

[11bravo]

John,

Is there a secret to your longevity? Or are you just one of the ones with a slower than normal progreassion?

Congrats on doing so well with this. I fear your a better man than I could ever be.

 

[jonsjr40]

11bravo
Thank you I don't know I just keep my self from getting down you have to or it well take you over. I'm shure I am know better man than you are you have to be strong. My kids is what keeps me going. If you want to talk to people with als go to http://alschatroom.com check it out.
GOD BLESS
John

 

[TanDaMay]

Hi to all - I am Marcie's Mom - I am so glad the holidays are over - We are doing OK considering we are nearing the 15th. year mark of a DX of ALS - however it started attacking her in the fall of 1992 when she was only 21 - then with a DX when she was 23 - and now living for 15 years with a DX of ALS she is 38 - but do not tell her I told you so - I am so glad I am able to be home caring for her - I would not have it any other way - she uses ERICA to communicate and control the things in her room - TV, DVD, VCR, radio - she can send email and IM to her friends - she even sends email to her Dr. - I am here to help other so if anyone reading this has questions - ask away - visit my blog and learn more about Marcie - read May 2008 - and how I spend my time helping others to Share the Care.

Linda G- Marcie's Mom
http://lindafrances.blogspot.com/

my counter is not working so leave me a message if you stop by my blog.

 

[Al]

Hi Linda, that link wouldn't work for me. Can you check it?

AL.

 

[nora_sg]

Hi guys,

I am Nora. It is indeed very up-lifting reading the posts in this forum. I am just wondering whether anyone could help provide me with some advice on something...

My mother has been diagnosed with ALS/MND in early 2007. She will be 55 this year. Although it has been barely 2 years, her degenerative progression seems to be moving on at quite a quick pace (or is it?). We just did a trachy and PEG 2 days ago for her because she has been having breathing difficulties and she can't swallow her food proper anymore. So right now, her whole left arm and leg is almost dysfunctional and she can't speak.

The doctor did remind us again about the disease have no cure but my mum needs tremendous emotional support. I definitely can't say that I know what she's going through, so I am just wondering whether there is anyone who knows of anyone who is facing the same conditions as my mum, or just anyone who may have some advice on this? - do tag or email me ya.. it will be greatly appreciated. Thx.

 

[rose]

Hi Nora,

Welcome to the forum. I am sorry for your mom's progression. There are several CALS on here in similar circumstances to yourself. Hopefully they will see your post, also, check out the CALs forum (ALS/MND Caregiver Support Group within this forum. Good luck to you and your family.