For a few months in 2011, when I would talk with my mom on the phone, her voice sounded dehydrated … rough, like there was pea gravel in her throat. Diet? Not enough water? At age 59, it didn’t seem possible that it would just be age. So after many doctor’s appointments, it took a savvy speech therapist to point out that her tongue had a tremor.
She was assigned to a local neurologist who conducted a lot of tests, some simpler than others. Tests like, “Hold your arms out to either side and try to press your middle finger and thumb together in rhythm.” My mom couldn’t. Her left hand was half the speed of her right. And there were tremors and/or twitching in her left arm as well. These tests, along with some others, led the doctor to one conclusion: ALS.
I’d be grateful to live with a disease half as well as my mother does with ALS. I could go and on and on about all the things she does incredibly well, but in light of the ALS Ice Bucket Challenge, I think it’s best to highlight that many ALS patients, my mom included, model the need for ALS awareness by giving themselves to those researchers who live to end ALS.
Because there is no cure, there’s really not much any doctor can do for my mom other than provide various levels of care towards her comfort and helping her adjust to the disease’s progression. Ironically, ALS patients end up doing far more for doctors than doctors do for them when they, like my mom, ride in the car for hours to reach specialized hospitals and clinics for a day or two of tests that help those working to find a cure for ALS.
My mom cannot talk, struggles hard to eat, and can walk very short distances and only then great assistance. Her mind, heart and spirit are vibrant, but her body is debilitated. Yet in this condition, she voluntarily has blood drawn, her spine tapped, and experiences a myriad of other very uncomfortable medical procedures, all so she can give a big part of the final years of her life towards ending this disease.
In other words, ALS patients like my mom go way beyond raising awareness through social media or financial contributions. They give their lives to end the very thing that is taking theirs.
In the last three years since her diagnosis, my mom has run through quite the bucket list. A Mediterranean cruise; time in Hawaii; time in NYC; time in the south of France; time in the Caribbean; time with family—all of which has been deeply rewarding, but none of which will go as far as her time in Mayo Clinic in Jacksonville. The number one thing on her bucket list was the last thing on your mind a few short weeks ago, but our hope is that you will join many others and contribute to help end this disease.
Thank you to all my friends and family who have participated in this challenge and made contributions, and for all of you who have prayed for my mom!