The ALS Over 5 Club
Two of my most favorite people and inspirations !!! They make things happen - Charlie Wedemeyer and Jack Simmons, of San Fransico Bay Area Chapter.
The "Over 5 Club" was a product of a desire by Lee Kramer to show the rest of the world, or at least those that visit here, that a diagnosis of ALS (Lou Gehrig's Disease) does not have to be taken as an End of the World Death notice. A strong Positive Attitude and Faith have helped a lot of us shoulder this cross as best we can.
We, the members, share with all who will listen to our stories and our experiences and like wise tell us of theirs. We exclude No One, we discriminate against No One. All PALS are welcomed as are their caregivers and family. Our sole goal is to communicate with each other to defeat this Monster in our lifetime. All postive and constructive input is valued.
We, the people with ALS have gotten together and published our first book "Journeys With ALS". This labor of love is the product of over a years worth of hard work and dedication mainly from David Feigenbaum and his family of Virginia. Through their efforts this book has been made available to raise funds for ALS Research. It is from a patients point of view only or from the family. It tells their stories and reveals their feelings and how they have fought and continue to fight this disease. Some are sad, some mad and angry but all tell of the fight that is required to LIVE with this disease. Any one reading this can receive a copy of that book by either emailing me(Ranger-1@pacbell.net) or writing to me at; Lee Kramer - 2808 Main St., Napa CA 94558. Any donations received from the book goes entirely to research for finding a cure for ALS. We hope you will help. Just make checks payable to the ALS Association. We thank you for your support.
FAQ of the Over 5 Club:
How large is your Club?
We are currently over 181 strong as of this posting. 133 of which are on the NET.
What countries are your members from?
We have members in the U.S., Canada, England, Belgium, Argentina, New Zealand, Australia, Brazil, Mexico, France, Netherlands, Ontario, Manitoba, Nova Scotia, Panama, Germany.
What Medications are you taking?
As a group we take; Rilutek, Myotrophin, Neurontin, Vitamins- C, E, B12, B6, Grapeseed extract, Zinc, Anti Oxidants,Magnessium, DHEA and Creatine and some are now taking Celebrex. Not all take everything. Some are in trials that prevent certain drugs. Individually we attack this monster with the input of our doctors and fellow PALS in any way we can.
How many are restricted to a wheelchair? As of this posting around 74.7% are wheelchair dependant. Another 21.7% use a wheelchair, scooter or walker as an alternative and rest from walking.
What Drug Trials have they been involved with?
Basically all that have been run! The Rilutek, Neurontin, Myotrophin and the Sanofi.
What do you all see as a major contributing factor to your longevity?
Many things seem to have gotten different people to where they are now, but a STRONG POSITIVE ATTITUDE AND FAITH, seem to be the most common factor we all share. NEVER GIVE UP!
We now have 83 of our club is in the Over 10 Club, 33 are over 15 yrs, 17 are over 20 yrs, and 7 are over 25 yrs.
Our Oldest member; Prof. Stephen Hawking, of the UK, Dx 1963 at age 21, 43 yrs LIVING with ALS.
As we continue to FIGHT this monster, all resources should be explored. Your thoughts and ideas are important to all us PALS. Share what you try and give help where needed. Together we WILL defeat this monster.
KEEP THE FAITH AND GOD BLESS
