If you’ve been touched by ALS, you know it’s a relentless thief. I was diagnosed in September 2020, at age 59, after about a year of symptoms.
Regardless of how it first reveals itself, its mission is to take over your body, step by step. It typically leaves your cognition and your eyes alone, but it takes your strength, your independence, and your stamina. It robs you of the ability to chew, swallow and eventually breathe. Muscles I spent years nurturing through yoga and exercising have evaporated. It stole my voice first and along with it my participation in my beloved show choir. I’ve graduated to pureed food, feeding tube nourishment and full-time wheelchair use.
Sounds grim, right? It is. But that’s not the whole story.
There’s also an amazing support community whose primary purpose is to make easier the lives of patients like me and our families as we transition through the phases of diminished capacity.
A year ago, after a series of falls, a big fall fractured my hip. One emergency hip replacement later, I was recuperating at the Foothills. The physical and occupational therapists were amazing. They helped me prepare my body for my new reality.
During one particularly sleepless night, when the noise on my unit was continuous, I decided it was high time to go home to peace and quiet and my own bed. Physically I was progressing nicely, but my home isn’t designed for a person using a walker. What changes needed to be made to allow me to go home?
· How will I get in the house? There are steps into both the front door and garage. At least one ramp needed.
· There’s a single step between my living room and dining/kitchen area. Perhaps another ramp?
· What about walkers? One needed on all three levels.
· How will I handle the stairs up to the bedroom/bathroom and down to my office and TV room? Chairlifts?
· Once I make it to the bathroom, I will need an elevated toilet seat and an armrest frame plus a bench for the shower.
This seemed like an insurmountable list. I talked it through with the OT in the morning. We made a few adjustments and she said she would relay it to Michelle, my outstanding coordinator at the ALS Society. I didn’t yet understand how much magic the Society can produce in short order.
Michelle relayed the list to the equipment loan department who pulled from their inventory of 1,500 pieces. They also pulled in vendors and installers as required. My daughter quarterbacked deliveries and installation. Together, they made it all happen in just two – yes 2! – days.
And the most amazing part? All this equipment is on loan, for free. Literally thousands of dollars of supports and I’m not on the hook for any of it. How impressive is that? And that includes the power chair and garage lift I’ve needed since.
No one wants to receive an ALS diagnosis. But when you do, its comforting to know the ALS Society has your back. Responsive, kind, magical. The ALS Society makes the impossible possible, every single day. I’m eternally grateful.