ALS's only OVER 5 CLUB

We need to hear from PALS & CALS who have made the dx by doctors of 2 - 4 years a LIE. We need your data to share with the ALS community and ALS researchers. They need to know our numbers are growing. Please HELP!

Our monthly update; Number of members; 145 On-Line, 194 total; AS OF; 06/03/07
Changes in red from last report.
Avg age of club; 57.8 Avg yrs w/ALS; 13.9 % in W/C (wheelchair); 69% % not; 11.7%
No data; 19.3% % Female; 33.1% % Male; 66.9% % on Vent; 28.3% % Not on Vent; 50.3%
No Vent Data; 21.4% Trached; 26.9% Not; 40.7% No response; 29.4 % BiPaps user’s; 29% No BiPap; 43.4% No BiPap Info; 27.6% % Volunteered for Trials; 22.8% %Didn’t; 40.7% # No response; 34.5% % on Rilutek; 33.8% % not; 41.4% No response; 24.8% % On Celebrex; 6% % not 51% No response; 43%

Countries: USA, Canada, Nova Scotia, Ontario, Australia, United Kingdom, Panama, Belgium, New Zealand, Guatemala, Brazil, India, Germany and Argentina.

Their reasons for longevity; Serious positive attitude, Faith in their Supreme Being, Attack the problem, active research and internet ALS boards, medications to a lesser degree, taking Anti-Oxidants, Stay active (somehow), Range of Motion daily (ROM). Finally to give hope to those newly Dx so they will strive to go the extra mile. To some 20 years is a goal, to others 3-5 years a great achievement. We all fight and progress differently. However, whether our fight ends at 3 years or 25 years it does not lessen our importance to the cause.

We now have 91 of our club in the Over 10 Club, 45 are over 15 yrs, 20 are over 20 yrs, and 9 are over 25 yrs.

Our Oldest member; Prof. Stephen Hawking, of the UK, Dx 1963 at age 21, 44 yrs LIVING with ALS.
http://www.hawking.org.uk/home/hindex.html

Our Mission Statement: To share our data with all who are touched by “Uncle Lou” to show the medical community and those newly diagnosed that the diagnosis is not necessarily the “END” as some professionals would have you believe. To answer all questions posed to our group. You can “LIVE” with Uncle Lou. It may take teamwork and adjustments to some hardships but it can be done. Staying in communications with each other and sharing those experiences with each other all helps in our longevity. As one great PALS said; “We shall not go quietly into the Night”. Now National needs to hear us. Please send them a message.

If you have not received your certificate please email me, I have it setup in Word now. Should open.

If you haven’t sent your data yet please do so now, or if you’re a new member WELCOME, please fill out below; Also please send your updates when possible. Still a lot of missing data.

Name;

Male; Female;

Trials;

Medications:

Devices/Support Equipment: Y or N / When

BiPaps; Vents; Trached; G-Tubes; Wheelchair; Scooters;

Age; age at Dx;

Yrs with ALS;

Why do you think you outlasted the 5-year dead line?