Thank you so much for this thread. As others above have shared it truely is a very difficult and pain filled life and death. Not only for those afflicted, but for the family who stands by helplessly.
My Love started out with a simple twitch in his right eyebrow. Then the right leg, slurred speech, a year's worth of tests. Emotional rollercoaster that ended with ALS.
He passed at only 47 years old. I am now a year older than him. For some reason that really gets to me. He will always be 47 in my eyes.
When he was diagnosed, I had to tell his family. The most painful call I have ever made. I pray this news brings treatment and possibly a cure, or prevention. And no one has to call and explain how this disease will kill their child, father, mother, son, daughter, friend.........
About a month after we knew what he had, the research hospital asked if they could run a DNA/family history for a study into causes of ALS. I called my in-laws and they all agreed to donate not only their blood(dna) but a complete medical (intrusive, all meds, embarrassing stuff) questionaire. They said abosolutely yes. Their personal Drs. ran the tests and the hospital paid the costs. It was a double blind study, but I hope that the information they gave may have helped with this find. Kudos to this family in 3 states that even told when they were potty trained or if they ever had a std!!! Now that is going above and beyond for your second cousin twice removed.
My husband was a mechanic and there was some talk that mechanics and gulf war vets had a higher rate of ALS. Petroleum, the fires in the war, but I don't know if that is still true. What was weird is that about a year after he died , his boss was diagnosed with it too. But we live very near 2 military bases. Within 2-5 miles either way. And they did want to know if we were ever in Guam. Not trying to start a conspiracy, just odd.
We did learn to roll with the punches. Redifined normal so many times we got the giggles. He insisted on wearing Carhart overalls. GRRR. I pulled them up too high once and he kept saying "fishy fishy fishy!!!!" LOL I finally realized he meant WEDGIE! OOOPS.
When he lost all ability to speak we used a wireless doorbell system one by the bed with one ring tone, another by his wheelchair. I had a pager. One meant bathroom the other was anything goes. Until what I labeled bing-bong abuse. He would ring me to run down to watch a replay of a football touch down, a comercial he thought was funny, oh yeah-and Janet Jackson's wardrobe malfunction. Doesn't matter how ill, diabled a man is, a flash of a boobie is something to talk about
Now I sound a little heartless, but I was also taking care of our infant (premature) grandson at the same time. So I was a little too busy to care about JJ's boob at the time.
The best/worst/funniest fight we ever had was when he refused to type to me. He could still use one finger on the computer to talk. Well he was giving me the cold shoulder and was I getting mad. He finally rolled over and typed out "Man does your face get red when you are frustrated" LOL he was right. Of course me being me said "well you should type when I want to talk" He had tears streaming down his face he was laughing so hard. It made sense when I blurted that out.
And his laughter
made me melt. I miss his laugh.
One more thing before I ramble on forever.
♥♥♥ Our son is our hero. He moved back home to love, support, and care for his father. All the while dealing with breaking up with the mother of his child and the trials of being a single father of a preemie♥♥♥ He now has a healthy 7 year old boy who has not only has grandfather's name but that twinkle in his eye when granny gets red in the face with frustration!
Thanks for listening.
P.S. If you see a fireman's boot this labor day, please donate. Just a little can give a family mobility, relief for caregivers, or just hope for a cure.
some videos about living ALS
[video=youtube;tPaYHLrT9sQ]http://www.youtube.com/watch?v=tPaYHLrT9sQ&feature=related[/video]
Imagine Living With ALS - YouTube
30 Days to Live - Larry's Story - YouTube
Tom's Dream: A World Without ALS (A Love Story) - YouTube