My grandpa was a surgeon. In the Navy. He went to Marquette University for medical school and did his residency at what is now Froedtert and the Medical College of Wisconsin.
Five years ago, my grandpa was completely independent. Driving, talking, walking, sort of emailing, hand cutting and polishing agates to make jewelry and bolo ties.
ALS took up residence, almost unnoticeable.
Starting with his speech. His words were a little slurred. Not all of them. Just a few. Weeks went by and a few more words sounded a little off. More weeks went by, and he started using a cane. Then he stopped being able to drive, to walk without a hand supporting him, to go from sitting to standing without someone helping to lift him.
Today, he can’t get out of bed. He can barely lift his arms to hold a bottle of water. To lift a spoon or fork. Swallowing is getting more difficult and coughing is hard. Forming words is almost impossible.
My mom, my aunt, my uncle, and a team of home health care workers and therapists provide him with 24 hour support so he can at least stay in his own home. The bathroom has been remodeled to allow for the lift to fit. Look up at the ceiling, and you’ll see a track leading from his bed to the bathroom. That used to hold the sling that the therapist used to help him walk from his bed to the bathroom, now it’s used for transport so he can be bathed somewhere other than his bed.
I’m not really sure what this has to do with buckets of ice water being dumped on heads, but I guess if it’s inspiring people to donate money to find a cure, then have at it. I will not be partaking in this new awareness raising campaign, but I will let you all know that ALS is maybe the worst disease imaginable. To lose all control of your body, with your mind completely intact. To be completely aware of everything. I would never wish this on anyone. So, if people want to go out and do crazy stunts to find a cure, I’m not gonna complain about it.
I am going to tell you that you can donate to the ALS Association (http://www.alsa.org/donate/) or to Project ALS (http://www.projectals.org/support-us/donate-now/) and you don’t need an ice bucket to do it.