Spevak: Buckets helping to extinguish ALS

August 29, 2014 

Seeing people pouring ice water on their heads makes me happy.

No, I’m not a sadist. I simply appreciate the thousands of people across the country bringing attention to ALS by responding to the “ice bucket challenge,” including professional athletes, movie stars and my granddaughters Hanna and Kaila.

I have a personal connection with amyotrophic lateral sclerosis. My 77-year-old brother Frank was diagnosed with ALS six years ago. His doctor gave him six months to live. The typical life span of a person diagnosed with ALS is two to five years.

Six years after his diagnosis, Frank is still going (relatively) strong. His neurologist at the Cleveland Clinic hasn’t figured out how Frank has done it, and has asked Frank to donate his brain to ALS research after he dies. Frank has agreed.

A large part of Frank’s survival is stubbornness, a trait that runs in the Spevak family. He refuses to give in, whine or complain. Another part is luck. Frank has a form of ALS that is not as dramatically progressive as in other ALS patients.

Anyone who has seen the recent television coverage of Peter Frates, the young man in Boston afflicted with ALS and the heart of the ice bucket challenge to raise funds for ALS, has noticed how quickly it debilitates most people afflicted with it.

My brother Frank, determined as he is, still has many challenges. For years his speech has been impaired, making it hard for him to enunciate his words and for others to understand him. His also has difficulty walking and maintaining his balance.

Frank is able to get around thanks to a motorized wheel chair, which has been loaned to him indefinitely by a local chapter of the ALS Association. He is able to sleep thanks to a motorized hospital bed, also loaned to him by the ALS Association.

He is able to maneuver in his bathroom thanks to a locking raised toilet seat with handles loaned to him, yes, by the ALS Association.

Each morning Frank is assisted by an aide who helps him get up, take a shower and get dressed. He has also used an aide in the evening, when he is most fatigued, to help him get into bed.

Frank is fiercely independent, and he has been able to live in his own home thanks to the help of Medicaid in Ohio and hopefully Medi-Cal in California (although the paperwork involved in moving from one state to another for a Medicaid/Medi-Cal patient is labyrinthine).

Yes, I am grateful for the ice bucket challenge. Donations to the ALS Association not only help researchers in their quest of an eventual cure but also help ALS patients like Frank right now.

I haven’t poured any ice water on my head, but I have made a contribution to the ALS Association. I’m hoping the wave of donations started by the ice bucket challenge will continue. I’d love to see Frank conquer ALS before ALS conquers him.

Right now he seems unconquerable, although he continues to face obstacles. After spending three weeks with him (and my sister Joan, who patiently and kindly helps take care of our brother) I have come to better realize some of those obstacles.

When Frank moved into his new apartment recently, its access for a disabled person looked pretty good to me. Then I discovered the thresholds of Frank’s apartment were a greater obstacle that I imagined.

For both the front door and patio sliding door, there are vertical metal threshold planes two-inches high. I didn’t think they were problems. But when Frank’s wheelchair ran into one of those metal planes, it stopped dead.

After a long search I found a business near Frank’s home which provides disabled accommodations, specifically rubber “threshold ramps” going in and out of both doors. Unfortunately they are not cheap: $802, installed.

Yes, patients with ALS have significant obstacles, physically and psychologically. I hope all of the donations coming to the ALS Association as a result of the ice buck challenge add up to enough money to help ALS researchers find a cure.

As one neurologist said, “We’re getting closer, but we need to put more time and money into solving the perplexing ALS puzzle.”

Comments on the writings of John Spevak, a California Newspaper Publishers Association Blue Ribbon Finalist for 2013, are encouraged, and can be sent to john.spevak@gmail.com.

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