Friday, September 30, 2016

The Truth Is Out There

My husband, Bill, has ALS, commonly referred to as Lou Gehrig's Disease. ALS has loads of symptoms, and all of them could indicate some other disease or illness. Since there are no true tests to determine if someone has ALS, a person could go bankrupt getting the battery of blood tests, MRIs, EMGs and nerve-conducting tests, among others, This is the reason why a person diagnosed with ALS has a limited amount of time before it ends their life. For instance, Bill went months of physical therapy with little or no improvement before going back to  his doctor. Tests which took a couple of months ruled out most the the "other" reasons for his symptoms. By then, the circumference, or measurement around his calf, read a whole inch smaller than the other calf.
This is due to the muscles not receiving the impulses from the brain that tell the foot to move it.
When we were putting together a piece of furniture, my husband needed help getting up from his kneeling position. That was the first time I realized how useless his foot had become. I literally had to bend his ankle and then press his foot against my thigh while kneeling behind him in order to let him pull himself up. ALS is a tricky little devil of a disease, though. Not everyone starts with "foot drop" like my husband's did. There are many more symptoms that would lead a person to suspect ALS, including:

  • muscle twitching or cramping in arms, legs, fingers or toes
  • tripping or stumbling; missing a stair on the way up
  • weakness in the hands or ankles
  • slurred speech or "nasally" voice
  • difficulty swallowing; more frequent gagging or choking when eating
  • difficulty holding head up or frequent slouching
  • tiredness or fatigue from doing normal daily routine
  • For more information on symptoms of ALS, click on THIS LINK to the Mayo Clinic

Look at all those generic symptoms! Now you see how difficult it is to diagnose ALS. They all fit other illnesses, many of them curable.
And that's when we came crashing into the wall of reality.

(Photo credit:


Thursday, September 29, 2016

How It All Began

It started with a numbness in the right ankle. It didn't hurt - my husband Bill just couldn't pull it up toward his shin. We had both experienced frozen shoulders, so we thought it could be the same but in the ankle. The doctor prescribed physical therapy, but after several months there was no improvement.
Then Bill came home in the middle of the day with the news that he'd been laid off. Looking back to that day, we thought that was the worst that life could hand us...
...except that I had a job. Very part-time, very low pay, but I carried the family health insurance.
Meanwhile, Bill's doctor had him doing all kinds of testing for what I thought was "the mysterious illness." It wasn't until he was told to get a second opinion that he finally admitted to a life-changing diagnosis. A month later, it was confirmed and the bottom dropped out of the world as we knew it.

Next came research--tons and tons of research. We found ALSA, the official ALS Association site. Whole lot of info there - almost too much, so take it in doses. Or zero in on what you want to know right away. Then bookmark the site so it will be at your fingertips (pun intended)  whenever you need it. What I did was to highlight and copy to a Word document the parts that I thought would benefit either our understanding of the diagnosis or suggestions that could help us as we traverse that path.
And don't forget that Jesus won out over the Devil because Jesus SAVES (as in that Word document, peeps!)