Recent content by rolark

Voice America ran a show called Family Caregivers Unite - where they discuss Family caregiving with ALS. The two people interviewed are 1) an ALS patient and 2) the spouse and caregiver of an ALS patient. I found that it has a lot of good points that we all think but rarely talk about. This is...

Gail has had shoulder issues - dislocated - frozen - and had to have the cortizone shot. The shot worked well to stop the pain issues and allow the shoulder to heal. The shoulders take a beating when you are constantly picking up a person by the underarms. Tim

I am looking for a manual wheelchair to get out for long walks on the streets and sidewalks now that spring has arrived. The chair is for Gail who HATES (if that word is strong enough) her power chair. We have a light travel chair and a typical Hospital style manual chair but I would like a...

We started out selling to friends, then our beading friends sold to thier friends. We looked for publicity anywhere we could find it... our local paper, Running Room Magazine, and most effectively an article in Canadian Living Magazine. They can all be seen on the media page of www.CureALS.ca...

4,000 Bracelets Sold $80,000 Donated We have now sold over 4,000 ALS Bracelets and have donated $80,000 for ALS Research. Research is HOPE Tim Gould www.CureALS.ca

Blood Clots Gail takes Warfarin daily to keep her blood thin. Gets a blood test every 3 weeks or so. We almost confused a symptom of blood clots ( getting fluid in the lungs ) with a quick progression of ALS and breathing difficutly. You can't stop ALS but the blood clots can be managed quite...

Gail had water in the lungs... we thought it was just the progression of ALS... shortness of breath ect.. Turned out it was due to blood clots in the legs breaking free and going to the lungs. Inactivity makes clots. Now she takes Warfarin daily - no more clots and no more water in the lungs...

Link being studied in Montreal between professional football players in Canada. In short, there have been 15,000 CFL players in History and 8 have contracted ALS. The rate for the general public is 2 in 100,000. http://www.cbc.ca/sports/football/story/2007/11/22/cfl-football-als.html?ref=rss...

This event is over but I wanted to share it's success for other people looking for a simple fundraising idea. Last Friday (Nov 2nd) some friends of mine with a band had a Halloween party as a fundraiser for ALS. The band is a group of young middle aged guys (www.hardlyaged.com) that get...

Best of Luck on ALS Golf Fundraiser! Joe, Best of luck with the ALS Golf Tournament! We had a great time last year and loved the silent auction afterwards. Everyone there will have an amazing time. It's a beautiful course, the meal is top notch. A very classy day that really helps out our...

Talking to kids Our approach was definitely gradual.... We called the school and did everything in our power to keep them "safe" from the truth. Then as we came to grips with Gail's diagnosis we talked about the changes that were occurring. We have never gone into the future too much because...

Support for kids We found ART THERAPY classes for our young children. 6, 8, & 10. It is through a Hospice in town and I believe we discovered it from Palliative Care. My 6 & 8 year old kids love going as it is not too intense... just one on one with the therapist. My 10 year old isn't...

Good Luck Good Luck on Operation Oprah! My wifes friends tried the same thing last year... They wrote about thier best friend "Gail" (my wife) and her battle. Tried to hit a nerve becuase Oprah's best friend is "Gail" King. We didn't get there but you don't have a chance if you don't try...

This was in a newsletter from ALS Association I get monthly. Paul Gordon, M.D., at Columbia University working with Robert Miller, M.D., and colleagues in the Western ALS Study Group, presented a Phase III trial of minocycline that showed an adverse effect in the primary outcome, the ALS...

$6,500 for a vehicle with a replacement value of $70,000 and it came from Baton Rouge LA so it has less rust on it than one Canadian winter. If you can get by the styling it's great. If we ever break down there is enough real wood inside to keep a warm fire for 72 hours. We just give it a coat...