When my husband was diagnosed with ALS it was after more than THREE YEARS of doctor visits, reciting symptoms that baffled doctors and enduring really frustrating episodes of falling, choking, slurred speech, weight loss and strange muscle contortions we didn’t understand.
That was and is unacceptable. Like most people who become blessed with ALS, we had no idea what we were dealing with. We just knew there was something terribly wrong. The fear of the unknown robbed us of years of joy. Fortunately, we recovered that.
150 years after Dr. Charcot first identified Amyotrophic Lateral Sclerosis, there is still no definitive test for ALS. The diagnosis is usually determined by the process of elimination.
The Ice Bucket Challenge awhile back, was the first big thing that brought ALS into the national limelight. Sure, we had Lou Gherig and Steven Hawking as our celebrity patients, but until the Ice Bucket Challenge, no one really connected the two, unless you or your family was affected by it.
ALS is further complicated by the fact that the patients don’t live long. Hawking was an extraordinary exception. My Pat was another. He lived a year longer after diagnosis than most patients. The average life span is 2-5 years after diagnosis. He lived 6.
There are also NO REAL TREATMENTS THAT WORK….let that sink in. THERE IS NOTHING, REALLY, out there for an ALS patient to try. Part of that problem is the patients die so quickly, it is very difficult to get together a good study group. By the time Pat was diagnosed, he was too far gone to be any use for research. MOST FRUSTRATING.
One bright light, though, is that the technology being developed to replace lost abilities in the patients is advancing at great speeds. The speech machine Pat used at the end was SO MUCH BETTER than the one he started with. His favorite toy was a gravity-reducing arm mechanism that enabled him to feed himself and play wizard chess. That was old technology developed after World War 2. But it still worked. Keep what works, replace what doesn’t.
Although Pat is no longer here, I feel like he won his fight with ALS. He never gave up. He always had the joy of living within him and looked toward the future. The night before he died, he was doing his leg exercises in bed, trying to maintain the little bit of muscles he had left so that when the cure came, he’d be ready. He never despaired and he loved his life. It was just too short.
SO MUCH CAN BE DONE. You can help. If you like to read, you can buy the book,. If you like to exercise, you can raise money at one of the many ALS walks organized nationwide. Or you can just plain donate to one of the many ALS research foundations, learn about ALS and if you see someone in a wheelchair, who cannot speak, YOU SPEAK TO THEM. They have not lost their humanity, even though they’ve lost some very real human abilities.
Here is the blog on our ALS experience titled: THE NAKED VALET. This one is less organized and coherent than the house blog. Because you know, I was busy. And if you’re new to reading blogs, they start at the end; so you’ll know what happened before we did.