This Is My Story Of Hope!

[jonsjr40]

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]

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]

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]

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]

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]

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]

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