the Over 5 Club
 

http://home.pacbell.net/ranger-1/don...roy_kramer.jpg
the Over 5 Club
http://home.pacbell.net/ranger-1/

Here are two members of the club. Lee Kramer, founder, and Don Altier. Both over 15 years and counting. Attending an ALS Walk to D'Feet ALS.

Our monthly update; Number of members; 123 On-Line, 181 total; AS OF 05/26/06 Avg age of club; 55.5 Avg yrs w/ALS; 13.1 % in W/C (wheelchair); 73% % not; 9% No data; 18% % Female; 30% % Male; 70% % on Vent; 24% % Not on Vent; 51% No Vent Data; 25% BiPaps user’s; 29% No BiPap; 46% No BiPap Info; 25% % Volunteered for Trials; 20% %Didn’t; 43% # No response; 37% % on Rilutek; 38% % not; 39% No response; 23% % On Celebrex; 6% % not; 47% No response; 47%

Countries: USA, Canada, Nova Scotia, Ontario, Australia, United Kingdom, Panama, Belgium, New Zealand, Guatemala, Brazil, India 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 52 of our club in the Over 10 Club, 21 are over 15 yrs, 7 are over 20 yrs, and 3 are over 25 yrs.

Our Oldest member; Prof. Stephen Hawking, of the UK, Dx 1963 at age 21, 41 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;

Name;

Male; Female;

Trials;

Medications:

Devices/Support Equipment: Y or N / When

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

Age; age at Dx;

Yrs with ALS;

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

While some of these statistics may seem to paint a horrific picture. Keep in mind that most patients are told at diagnosis to get their affairs in order and expect to ONLY live from 2 - 4 years with Sparodic ALS, much less with Familial ALS. Each year more and more patients are living past the expected dates predetermined by the medical doctors. This is largely due to the research efforts of some very dedicated doctors and research centers and the sharing of information between patients, PALS, ALSA, MDA and others to help try to find a better way to LIVE with this disease until a CURE can be found.

If you are or know someone with ALS feel free to share your statistics with this club and others. In this way we may give some hope to those who may otherwise see none and therefore give up too early. This club will keep all personal information confidential unless a signed release form is received. Please send your information to Lee Kramer at; Ranger-1@pacbell.net

KEEP THE FAITH AND GOD BLESS:
http://home.pacbell.net/ranger-1/_Ov...b___Stats.html