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jonsjr40

Active member
Joined
Oct 4, 2008
Messages
61
Reason
PALS
Diagnosis
02/1991
Country
US
State
VA
City
castleton
Hi my name is Johnny. l have had ALS 17 years it been a long hard fight. heres my story. It all started in 1991 Iwas at work I was a insulater you know the itchy stuff I did that for 19 years will I started triping a lot and falling so I went to the dorctor it took about 3 months to find out I had ALS. when I fond out I never herd of it. They gave me 2/4 years to live that was very hard to take. I had two kids a boy 1 and a girt 6 so I just wanted to see my kids grow up. Will my kids are 18 & 23 and I have a grandbaby 4 months old. You know after about two years my wife left me that was real hard on me but I had to keep it together for my kids. I was only 31 when I was DX with ALS. The best thing that has happen to me is being on the internet. I just been on for about two months and I fond my first love. We kept that love alive for over 26 years even after all that time of being apart the love was still there we got married on Nov. 9th last Sunday and our love is getting stonger every day. I thank God for every thing he has bless me with. I love my life! Know I don't have much use of my hands.arms,legs but I have family and my kids and my Donna /wife and that's all I need!
IF ANY ONE WANTS TO TALK YOU CAN EMAIL ME AT( [email protected] )
GOD BLESS EVERY ONE
Johnny
:-D:-D
 

vmd

Senior member
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Apr 27, 2007
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581
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Other
Country
US
State
idaho
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johnny:

That is a long time with ALS. I'm glad to hear you are doing well. Do you suspect that fiber glass insulation was a cause of your ALS? I never heard of that connection before.
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
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oakland twp
Johnny~

You made my day! When you said how young your kids were and that you are still and recently married? I am speachless and inspired! You rock! I pray that I can see my kids for anther 17 yrs with or with out a disease.

Many blessings to you!

april
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hello johnny

welcome to the forum,WOW what a great uplifting story.
i became ill 9yrs ago in 1999,then my son was 10yrs old.
as a single parent he kept me going,kids are great like that.
i keep saying this but i really think keeping as positive as you can,having good support and keeping active as possible with hobbies and such really helps.
theres quabiliss,mike and others who are really positive and have lived along time with als.
i hope you have many more happy years ahead.:)
 

Sophia

Member
Joined
Jul 4, 2008
Messages
11
Reason
CALS
Diagnosis
06/2008
Country
CA
State
BC
City
Chilliwack
Thanks for the hope

Hi: As a caregiver of my Mom who was diagnosed with ALS in June of this year your story is an inspiration to us. Mom keeps on saying she plans to live at least another 15 years and to hear that that is even possible with this disease is indeed a relief for me. Is it just a very slow progression over the years or did it progress to a certain level and then stayed the same? Thanks for sharing your story and God bless you.
 

SteveS

Active member
Joined
Sep 23, 2008
Messages
98
Reason
Loved one DX
Diagnosis
11/2008
Country
CA
State
BC
City
Campbell River
Yes, this sounds remarkable. We are also hoping since with Micheline being limb onset that her progression is much slower and that we as well have many more years to come. I would be interested in knowing more about your progression if you care to share your story a bit more.
 

jonsjr40

Active member
Joined
Oct 4, 2008
Messages
61
Reason
PALS
Diagnosis
02/1991
Country
US
State
VA
City
castleton
Hi every thank your post. No I don't think working with insulation had enything to do with it. My dad did it for 50 years and had no ALS. and about my progression has been so slow over the years I hardly even see it. I don't even go to the doctor about ones every 8 months he don't like much but I till him if I don't fell bad then why come. I want every one to know I did work out a lot and walked a lot. I think that helped me a lot but I'm not a Dorctor.
GOD BLESS
Johnny
 
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