salute to odds busters

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pearshoot

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PALS
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02/2010
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US
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nixa
a big salute to the odds busters passing the five year mark. keep this up and the odds makers will have to change 2-5 years(per dr's) to 3-6 and up. still a tenderfoot in this battle so question, other than maintaining a strong belief system hope and a good pma what do you beieve that you have done that has helped you reach this plateau? maybe a dr willing to think outsie the box?
 
This is a really interesting question. My husband will be celebrating 5 years of living with ALS in April. Honestly, hard to believe. He has tried almost every natural and pharmaceutical remedy. Honestly, the medicine that I think has helped plateau his lung capacity decline is the Namenda. I have no proof.....or medical backing. Just my observation. I wish I could be clearer......it has been a loonnnnggggg 5 years. I would say that having HOPE and holding on to hope has been what has sustained my hubby. Good luck with your search......
 
PMA. My husband started having "symptoms" that were overtly noticable in 2005. No special concoction or doc that thinks outside the box. Just PMA.
 
I like this thread because I agree with it. Buy beating the odds it gives us newbees hope with a desease that there is non. Thank you for still posting and responding to our(the newbees) asking questions that are repeats. You inspire me. With out you we would flounder in our questions.
 
Actually, anyone who has made it to the three year mark from the onset of first symptoms has beaten the odds (60-40 against), according to the studies.

I've posted this advice from a 20 year ALS survivor before, but it's definitely worth repeating:

Be so busy living the life you still have that you don't have the time to slow down and die.


My other favorite pieces of advice for life in general:

Don't borrow tomorrow's trouble today.

Sometimes it is better to be lucky than good.
 
My first symptom began around 11/04... took a long time to diagnose. That date is also, like trfogey's, 7/07. I have stayed busy and am a Pollyanna. Too many things to be glad and thankful for to list.
 
And, for the record, my symptoms, like those of abbas child, began well before I was diagnosed. I started down the diagnostic road in November 2006, but I am fairly confident that my symptoms actually began in the fall of 2005. I didn't have any problems being diagnosed. I've simply been blessed with very slow progression.
 
I was diagnosed in 10/08. My first symptoms appeared in 6/03 or there abouts and I began doctoring in 2/07. I was lucky things moved fairly slowly until June of 08 and I began taking the signs to heart and finally had a referral to Mayo in Oct that year.

Since then I have noticed a more rapid decline in both arms am am adapting to the use of assistive devices. I consider myself blessed with ALS - I am learning to enjoy each day and making new friends! Life is richer.

So I have beat the odds from onset in 2003 till now.
 
my PALS onset was in the fall of 2001. He was diagnosed in the summer of 02.
 
42 months since I first noticed symptoms and 38 months since diagnosis. Love beating the odds!
 
42 months ago is the date the Docs gave us for beginning symptoms, not diagnosed till 18 months ago, as we did not go to a Dr. Actually kind of glad we didn't go to doc right away. We had 20 months of living without knowing about ALS. ALS was never even on my radar until a week before we went to the hospital.
 
I attribute my slow progression to daily injections of yak urine
 
I attribute my slow progression to daily injections of yak urine

OK - just joking ;)

Seriously - some of us are just "lucky" to be slow progressors...

IF anything has made a difference I think it has been to keep busy, as others have mentioned. Do everything you can to keep your mind occupied with everything except ALS. Try not to dwell on it. Don't let ALS become your whole life. This may be tough for some but try your best. Take up a hobby, read books, take a course online, take up birdwatching, play video games, set up your own off-track betting shop.

Look at Stephan Hawking. He never seems to make any reference to ALS.

My focus now is to convert my recumbent "hands-free" bicycle (trike actually) into an ebike. My arms are shot but my legs are still strong; however, my upright FVC is 37% so I think I could use the assist of an electric motor.

I have a child bike trailer hooked up and I am determined to bike my daughter to school when she starts kindergarten in September 2011.
 
42 months ago is the date the Docs gave us for beginning symptoms, not diagnosed till 18 months ago, as we did not go to a Dr. Actually kind of glad we didn't go to doc right away. We had 20 months of living without knowing about ALS. ALS was never even on my radar until a week before we went to the hospital.

In the early stages, prior to debilitation setting in, ignorance is bliss. I just assumed I had carpal tunnel syndrome for 6 months. An earlier diagnosis certainly wouldn't have helped me.
 
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