There are just two items left on Kevin Clay’s bucket list: the Super Bowl and Heaven.
Until recently, only one of those was guaranteed, the 54-year-old Charlotte man says.
Diagnosed less than two years ago with ALS, also called Lou Gehrig’s disease, Clay can no longer walk or speak. He communicates by typing messages on his phone.
There’s no cure for ALS – amyotrophic lateral sclerosis – and Clay, once a marathon runner and Microsoft employee, said he doesn’t want to continue clinical trials that make no promises but could slow down the progression of the disease.
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He’s made peace, he said, with what he calls the “death sentence” of an ALS diagnosis.
So, for now, he’s living life to the fullest.
Focus on what you can do, not what you can no longer do.
Kevin Clay, Charlotte resident with ALS
A Carolina Panthers season ticket holder for two decades, Clay and his wife Melinda weren’t chosen in the PSL lottery to buy tickets for the game. So, they bought a Super Bowl vacation package that will get them inside a wheelchair-accessible part of Levi’s Stadium for the game and a pre-game party, as well as on the field afterward.
It will be the first major vacation the couple has taken since Clay’s been sick. The Joe Martin ALS Foundation of Charlotte helped them plan the trip. They left Friday and plan to return Tuesday.
The excitement that Clay can’t verbally communicate is nevertheless clear and written all over his face: Ask him about attending the Super Bowl and a huge smile spreads across his face.
Clays says a lot of people with ALS only hope for a cure for their disease. While he wouldn’t turn life-saving medicine or treatment, Clay said his primary wish “is for the Panthers to bring home the Lombardi trophy.”
Trip to see Panthers may be ‘last rodeo’
Kevin Clay is what some might call a Carolina Panthers “super fan.”
The team memorabilia in his house and his faux hawk dyed Panthers blue is a scene rivaled only by the view from his South End apartment. He’s never far from his beloved Panthers and has a clear view of the Bank of America Stadium and the city skyline.
Then, there’s his 15-month-old son: Cameron Ross Clay, better known as “Cam” or his nickname “Super Cam.” Yes, little Cam is named for the Panthers’ star quarterback Cam Newton.
Cam loves dancing in the living room as much as Newton likes to dance after a touchdown, and he enjoys watching football with his dad. He and Melinda Clay both have No. 1 Panthers jerseys and the whole family has stocked up on Super Bowl 50 gear.
Their house is full – full of brio for the Panthers and full of people. The Clays also have a 10-year-old daughter, a part-time nanny for Cam, an in-home health nurse, and a rescue dog, Annabelle.
Neil Cottrell, president of the Joe Martin ALS Foundation, said juggling children, work, chores, and around-the-clock care-giving for a person with ALS can be an exhausting job for spouses and relatives. His organization steps in to help people like Melinda Clay, who is her husband’s full-time caregiver.
600+ people in N.C. have ALS
This week, foundation employees helped the Clays pack and prepare for their Super Bowl trip. Cottrell and his staff have helped smooth out some of the more difficult logistics of the cross-country flight and vacation.
A national company, Pride Mobility, will provide a power wheelchair for Clay when he deplanes in California. The family chose not to take his wheelchair from home to avoid the chance of damage during transit.
A local chapter of the Muscular Dystrophy Association will deliver loaner medical equipment to the Clays’ hotel. And the ALS Association will advise the couple on wheelchair-friendly transportation options.
Only 10 percent of people have the type of genetic ALS Clay does, Cottrell said. In North Carolina, an estimated 600 to 700 people have ALS and there are nearly 30,000 people living with the disease nationwide.
Still, Cottrell said, research funding available to study and develop treatments for ALS is less than money used for cancer research and other illnesses.
“It has not gotten the attention of a lot of other diseases,” he said.
So, organizations like Cottrell’s want to make sure families affected by ALS have backup. The Joe Martin ALS Foundation’s services include home care help, transportation to doctor’s visits, and equipment loans like custom computers that aid people with limited motor skills communicate.
And, Cottrell likes to help people with ALS stay keyed into their hobbies by making sure big vacations aren’t impossible – like the Clays’ trip to the Super Bowl.
For Kevin Clay, the trip to the Super Bowl to watch the Panthers is not only a longtime dream but may be his last time watching the team play live. He calls it his “last rodeo” because the progression of ALS could make it even more difficult for him to attend games.
And, when that happens, Clay will try to embody the advice he has for others who may face challenging circumstances: “Focus on what you can do, not what you can no longer do.”
Want to help?
The Joe Martin ALS Foundation of Charlotte provides help to people with Lou Gherig’s disease and their families. The organization accepts tax-deductible donations to help provide services like in-home health care and special travel arrangements for people with ALS. The foundation also needs volunteers.
For information, visit joemartinALSfoundation.org or call 704-332-1929.