About 10 years ago, I met a woman whose husband had died of Lou Gehrig’s disease – Amyotrophic Lateral Sclerosis (ALS). I remember her recounting a panic call to a friend when she could not get her husband out of the bathtub. I was saddened to think of her husband’s embarrassment as he lay in the tub fully aware and totally unable to move. Her story was a sad one and I remember thinking how lucky I was.
My luck has run out. My husband now has ALS . . . and will die from the complications of this tragic disease. ALS reduces vibrant people to total dependency. The vibrancy, emotion, and intellect remain but the body becomes an unresponsive, immobile shell.
This future is very different than we imagined. My husband is a photographer who no longer has the strength to photograph events (like weddings); he is struggling to make a living doing portraits only. I retired recently and looked forward to motorcycle trips, scuba diving, walking the dogs, and dancing with my husband. Now, he can no longer do any of these activities. It is a struggle for him just to go to the grocery store. I will be his caretaker as long as possible, with weekend help from his children, but caretaking will become increasingly difficult as the disease progresses and his incapacity grows.
On a long-term level, we are frustrated that there is no national ALS registry showing the true number of patients with ALS; a true picture of the extent of the problem would help focus research for a cure.
On a short-term level, we are frustrated that there is no assistance or insurance coverage for the costly items needed to overcome day-to-day obstacles: $20,000 for equipment to add to a van in order to carry a wheelchair; the cost of widening doors and adding ramps in our home so a wheelchair can pass; the cost of modifying the bathroom so that my husband can bathe and get to the toilet.
We are taking this one day at a time, but feel trepidation about what awaits us. Close your eyes and picture yourself in our shoes. Can you help resolve the frustrations all ALS patients face?
See the following website which is promoting awareness of this disease: http://www.rolloverals.org/ .
Rhonda C. Brodbeck
Caregiver to Mark, Person with ALS (PALS)