Last week I sent an email out to many runners that I know, telling them about the fundraiser for ALS that is being held in conjunction with the Santa Barbara International Marathon. It’s through the Muscular Dystrophy Association – ALS division. It gives me something positive to work on, helps raise public awareness of local familes impacted by ALS, and hopefully will raise enough funds to help MDA in their research to fight ALS. We will be doing our fundraiser in conjunction, and with the support of, the inaugural Santa Barbara International Marathon. Other local families with a member who has or who has died of ALS are also getting involved.
On August 5th, 2009, my husband Hal was diagnosed with ALS, better know as “Lou Gehrigs Disease.” We had just celebrated our 30th Wedding Anniversary exactly one week earlier. And suddenly our lives fell apart. Below is the letter I sent to several of our running colleagues:
You probably mostly know me from seeing me running – at the Saturday morning coached workouts, or occasionally in races, especially short ones! A few years ago, I wasn’t running at all. I had some health issues that kept me off my running feet for almost 15 years – until about three years ago my husband, Hal, encouraged me to ease my way back into it.
Hal himself was training. He had a goal – to run the Boston Marathon. But first he had to get in shape. He started running every day. Lost 50 pounds. Joined the Santa Barbara Athletic Association. Gradually got stronger and faster. Looked like he was right on track to qualify this year. Hal registered to run the Santa Barbara International Marathon. He was very excited about the event. He planned to qualify for Boston at the Los Angeles Marathon – and then improve his performance at Santa Barbara.
Then around February, things started to fall apart. He was tired all the time, and getting weaker instead of stronger. He kept injuring himself. Blamed it on “overtraining”. Then we noticed his speech seemed slurred. He tried to run the Los Angeles Marathon. Had to stop halfway because of severe cramping. Couldn’t finish. Kept training, but with more rest, less distance – and thought he would surely qualify for Boston at the Santa Barbara Marathon. But things kept getting worse. Finally Hal saw a doctor. Then a Neurologist. Then went for tests. And more tests. He was sent to UCLA for even more tests. Finally, on August 5th, 2009, we got the horrible news: Hal has ALS. A degenerative disease that causes progressive muscle wasting, eventually leaving the victim unable to move, talk, eat, or even breath. There is no cure. Yet.
People with ALS can continue to live and even enjoy life, if they are able to access good medical care when they need it- communication devices, motorized wheelchair, feeding tube, ventilator. And research scientists are out there trying to find effective treatments – maybe even a cure. . .
Meanwhile Hal, amazingly, is enjoying life. As he loses his strength, he tells me he appreciates more and more what he has left. This week he was able to jog/walk with our ridgebacks for almost 2 miles. He is very happy he can still jog. And walk. And enjoy More Mesa and Ellwood. His speech is slow – but he is happy he can still talk. He chokes on food and water frequently – but he is enjoying every taste, every swallow. He needs help opening jars, bottles, and other things – but he isn’t embarrassed to ask me for the help – he does it with a small smile. . . I don’t know how Hal can see life in such a wonderful way – but I am grateful that he has that ability, and am trying to support his positive attitude. And I cherish every moment I have with him.
One surprising thing Hal and I have learned is that ALS is more common in marathon runners and endurance athletes than in the general public. This is statistically significant. And very disturbing.
I am sending you all my direct link to the MDA ALS website for the Fundraiser. Some of you have already donated and/or are helping me in other ways. Thank you so much. Please don’t feel obligated to donate. Come cheer our ALS relay team on (after you finish the marathon, if you’re running it.) We’ll be wearing yellow T-shirts, and Hal is going to anchor the last 1.9 miles. He might not be running, but he will be finishing the marathon.
See you on the road –
Another nice link is the link to the MDA-ALS team page, which has links to other participating local families, each with an story of their own. . . https://www.joinmda.org/MyEvent/MyTeamHomepage/tabid/116843/Team/ActiveAdultsAgainstALS/Default.aspx