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

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jonsjr40

Active member
Joined
Oct 4, 2008
Messages
61
Reason
PALS
Diagnosis
02/1991
Country
US
State
VA
City
castleton
MY name is John
I have never been to a suppor group.I did not know what I was missing.Im 47 and Ihave boy 18 and a girl 22 and a grandbaby 2 months old.I just got my first pc can u tell. its a eyegaze I love it no hands and nothing on my eyes .Not very good at writing. I stay on the internet now. I know its hard but try to keep smiling that's what I do . :lol:
If any one wants to email me my email is [email protected]
think you all reading this GODBLESS all .by for now
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, John ... welcome to the forum! So glad you found us. Please tell us your story ... what is going on with you, all about your grandbaby, etc. Seventeen years is remarkable. You are an inspiration !

BethU
 

jonsjr40

Active member
Joined
Oct 4, 2008
Messages
61
Reason
PALS
Diagnosis
02/1991
Country
US
State
VA
City
castleton
Ok heres my story
Igot ALS in 1991 and than every thing fill apart my wife left me after one year for my frind. I had to move in with my mom and dad .its hard but Iheld my head up I got to where I was not walking for five years but then.I started working out and then started walking in one month.This is with in six years .Its been 11 long years and Ihave not been eating for two years. but I just keep smiling. now I have more to live for then everwith my grandaughter ( kaydance ) well I got to go if you want toask me any thing you can email me at [email protected] good by john
 

Michael B

New member
Joined
Jul 2, 2008
Messages
6
Reason
Loved one DX
Diagnosis
06/2008
Country
US
State
PA
City
Everett
Denise

Jon,
I am a mother of a 30 year old that was just diagnosed with ALS in June. He is having a hard time accepting the diease. He is single is eventually going to move home with us. Do you have any suggestions for us to help him deal with what is ahead of him?

I would appreciate any suggestions.

Denise
 

bossman

Active member
Joined
Aug 26, 2008
Messages
49
Reason
PALS
Diagnosis
07/2008
Country
CA
State
Ont.
City
Hamilton
17 years that's a long time to have. I give you credit for putting up with it so long. Me I have had it about a year and a half can't write type a ride my bike. Doctors are taking my drivers license. Mine is very aggressive, and I have to say I don't want to wait 17 years to go. Doctors say I have about six to a year left had to tell you the truth. I can't wait
 

Omar

Distinguished member
Joined
Apr 13, 2007
Messages
138
Reason
PALS
Diagnosis
08/2006
Country
BE
State
Belgium
City
Brussels
Hey John, what about your current conditions? are you still able to walk?
By the way Denise I am 29 and have had ALS for 3 years now, so maybe telling your son about people his age living with the disease could be a first step. 'He is not alone in this'
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
John,
Way to go! I certainly admire your positive attitude! Keep up the good work!
regards,
brenda
 

jonsjr40

Active member
Joined
Oct 4, 2008
Messages
61
Reason
PALS
Diagnosis
02/1991
Country
US
State
VA
City
castleton
Omar
No I cant walk but I can stand.I cant eat.I eat by tube now its been two years .Its not that bad .I can still talk. I still breve on my own. thank you Brenda I just want let it get me down! Omar I hop you don't mind me asking how are you doing with it?
GOD BLESS
JOHN :lol:
 

TanDaMay

New member
Joined
Oct 18, 2008
Messages
7
Reason
CALS
Diagnosis
01/1994
Country
US
State
Tx
City
Arlington
Jon,
I am a mother of a 30 year old that was just diagnosed with ALS in June. He is having a hard time accepting the diease. He is single is eventually going to move home with us. Do you have any suggestions for us to help him deal with what is ahead of him?

I would appreciate any suggestions.

Denise

Lets see if this works - my daughter was DX with ALS when she was 23 - that was 14 1/2 years ago - I would love to email you - we walk in the same shoes - she lives in the same room she has had since she was 6 years old.

Linda

you can read about Marcie in the May 2008 listing on my blog:

http://linda-frances.blogspot.com/
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
Linda,

what an awesome story! Actually, lots of awesome stories! The quads are adorable, and your Marcie is beautiful. I'm sure it hasn't been easy for you and your family over the last 14+ yrs, but I know God is watching over all of us every minute of every day.

I was diagnosed 6/3/08 with ALS. I'm not sure why either, but I usually say "why not me". I think God must have known I would keep talking about ALS, and trying to raise awareness in any way I can, so He planned this for me.

I try to remain as positive about all of this, with 3 boys in all sorts of sports, my hubby just retired, I'm almost finished with my bachelor's degree, we live on a farm with cattle to care for, whew, I'm out of breath!

Please share when you get a chance,
Keep the faith,
brenda
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Thank you so much for sharing your family's story, Linda. I hope we get to "meet" Marcie on this forum, too. And the quads are precious! Cindy
 

Omar

Distinguished member
Joined
Apr 13, 2007
Messages
138
Reason
PALS
Diagnosis
08/2006
Country
BE
State
Belgium
City
Brussels
Hey John, so far I still can walk talk eat and breath on my own, I have weakness mostly in my hands (fingers) and in my legs walking downstairs. Have you been meeting Pals for the past 17 years?
 

jonsjr40

Active member
Joined
Oct 4, 2008
Messages
61
Reason
PALS
Diagnosis
02/1991
Country
US
State
VA
City
castleton
Omar
I just been on the internet for a month so I pals at all.I love pals.
Linda
I loved the blog, god bless
John
 

Omar

Distinguished member
Joined
Apr 13, 2007
Messages
138
Reason
PALS
Diagnosis
08/2006
Country
BE
State
Belgium
City
Brussels
No no John I didn't mean virtual contact, I was wondering if you had any real contact with other Pals before joining the internet forums. For me It could have been very difficult and scarry without internet and up till now I haven't met any Pals (face to face) even though I am looking forward for the moment.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Well, Omar, I am not a PAL but that offer to buy you a cup of coffee the next time your plane lands in Boston still stands...Cindy
 
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