Friday, May 2, 2008

It Could Happen....

When we share our lives with a rare, deadly, incurable disease like ALS, our thoughts tend to stray to what ifs and wishes as well as pleadings and prayerful deals.

Lately my thoughts have turned to synchronistic and outright unbelievable treatments and cures, medicines and science that makes me believe that a treatment and yes, even a cure, for ALS cannot be far away.

Brian Williams gave me hope -- hard to believe that the nightly news could instill hope in anyone. But watching the segment about dancing one's symptoms away, made me realize that stranger things happen than finding a way to defeat ALS.

In the segment people with Parkinson's Disease learned that dancing made their symptoms disappear. While dancing their hands no longer shook, their brains cleared, the voices returned to normal. They were, like Cinderella at the ball, magically transformed. Of course as soon as they stop dancing, the clock strikes midnight and they once again don the tattered clothes of Parkinson's Disease.

Doctors don't understand why dancing works. Which gives me even more hope that some strange and wondrous cure will be found for ALS. Recently a scientist in Italy combined riluzole, the one drug found to slow the progress of ALS, with lithium. Alone riluzole only brings about a 10 percent decrease in the progression. Together with lithium, they stop the progression. Stop it. Stopped it in every member of the study who took the combination of drugs. Stopped it for two years, I'm told. Maybe as long as they take the combination it holds the disease at bay.

It certainly is worth giving it a try.

What may be even more remarkable than a scientist figuring out the need to combine these two unrelated drugs, is the idea to use riluzole as a treatment for ALS. I've been told that it is actually a detergent. A cleaner. A cleaner as in laundry detergent.... I am still not sure I believe that information, although it came from a reputable source. Maybe I misunderstood. A laundry detergent slows down the progression of ALS. Amazing.

Maybe it ranks right up there with injecting a disease into a person to make them immune to the disease. Or what about people chewing on willow twigs to cure a headache or licking a frog for pain relief or sticking tiny pins in their bodies to cure whatever ails them. Maybe it ranks right up with meditation and prayer for miracles.

But, when you share you life with a rare, deadly, incurable disease like ALS, tilting at windmills, grasping at straws, believing in the unbelievable becomes a way of life. After all, accepting that such a disease has attacked my husband, changed our lives forever, is also beyond belief.

He takes the first step this weekend toward including riluzole and then lithium in his daily treatment. We welcome all prayers, good wishes, happy thoughts, glass slippers....and most of all we pray for 'happily ever after.'

1 comment:

Ruth D~ said...

Count me in. I'm with you, both. Fingers crossed, too, because. . . who knows?