Father has had als for ten to 11 years now

[caperdals]

My dad has had als for around 11 years now they are calling it als because they don't really know what's going on he's lost the ability to walk he can still stand him self up but his balance has gone for about 6 years his legs don't work anymore but he can still brace him self enough to stand up. He's had the feeding tube for about 4 years now he doesn't need to use it but he was told he needed to get it.

He can still speak some days it's weak and he can't swallow properly other days he can speak normally and eat you wouldn't even know he was sick the speech and eating thing has been going on for a few years doctors have no explanation because they only gave him two years to live at diagnosis he still welds and builds things in his back yard hands don't work but he makes it work.

He just got a 70 thousand stand up wheelchair so he can stand him self up without struggling community and government and family helped pay for it. Any progression with his Als has seemed to stop in the last few years yet again doctors don't know why. Only thing that made me angry is the Ontario medical system keeps asking if he wants maid.which he doesn't want right now. Just thought maybe I share something somewhat uplifting.

 

[Mary2]

Your Dad sounds like a creative person, still doing welding and building in the back yard! I am glad he was able to get the wheelchair he needs!

 

[Tomswife]

Thank you for sharing. He sounds very resourceful. I am glad his symptoms have not terribly progressed.

 

[KimT]

That's a great story. Glad to hear he's still getting lots of joy out of life. You just never know about progression. I hardly progressed at all for nearly five years. I was so convinced I was misdiagnosed I went to another neuromuscular doctor and got another EMG and clinical evaluation. He said I was just unusual.

I know one guy who is alive after 20 years and no vent. He can't walk or talk but he has a productive life.

 

[Vincent]

I am at year 8 and other than my left ankle, things are going ok. I can still walk short distances, and putz around with watches. My next appointment at Sunnybrook is to do electrophisiology on me. More needle EMGs and nerve conduction tests. I am sooo looking forward to it. ALS is truly a weird disease. I have buried too many people I have met along the way. And here we are, still ticking along years later.
Vincent

 

[affected]

good to see you posting Vincent!