ALS Ice Bucket Challenges are entertaining to say the least, but the cultural phenomenon is raising incredible awareness and funds for research. As of Thursday, Aug. 21, the ALS Association has received $41.8 million since the viral challenges started. Last year, the same time period saw $2.1 million raised. Stunning!
Locally, many Wilton residents have already taken the challenge, as Facebook feeds are filled with videos of kids and adults getting doused and pledging to donate. Just Wednesday, the staff of Miller-Driscoll Elementary School took part in the challenge, with some help from Wilton Public School‘s superintendent Dr. Kevin Smith. (See the adorable video here.)
But the ice bucket challenges mean a great deal more to those living with the disease and their families. The spotlight shining on ALS has also helped clarify that the subject is much more significant than an entertaining 40-second clip of our friends getting soaked with ice-cold water.
One such brave individual with Wilton ties who is living with ALS is former Middlebrook School teacher Tom Everett, who taught social studies there for almost 40 years. He was diagnosed eight years ago, and the progressive disease has taken its toll–recently it’s become increasingly difficult for him to even speak.
He has a group of very close Wilton friends, who call themselves “the Fellas.” It includes Mark Ketley, the executive director of Trackside Teen Center. The two became friends when Ketley, who grew up in Wilton, played on a baseball team coached by Everett. Current Middlebrook dean Jory Higgins is also a close friend, organizing and leading an annual fundraising team called T.E.’s Fellas and Ladies for the ALS Association “Walk to Defeat ALS” in October.
They are devoted to him, visiting him and his wife, Diane–who also taught at Middlebrook–regularly at their home in upstate New York. “Tom is an extraordinary man who deserves SO much better than he’s been dealt here,” Higgins said.
Ketley added, “To meet him, you would be leaving the meeting thinking the world is the greatest place to be and being in his world is a privilege. He’s just amazing. His dedication to Wilton and his students was amazing. He was an incredible teacher, and he’s an incredible person.”
GOOD Morning Wilton reached out to the Everetts to ask if they would share their story with our readers, to give an idea of what kind of toll this disease takes and to hear from someone with close Wilton ties what deeper impact the ice bucket challenges is having. We exchanged emails–an easier way for Tom to communicate, with Diane’s help typing for him. Rather than us tell their story for them, we’ll let their words speak for themselves.
DIANE: ALS is very difficult to diagnose as there is no specific definitive test. Basically, the doctors simply rule everything else out before they say it’s ALS. In December of 2006, Tom began to experience weakness in his calves when he played basketball with the Fellas and his legs suddenly began to tire very quickly while running. He tried to ignore it, thinking he had simply overdone his workouts.
In April of 2007 he finally visited his doctor who told him it was probably a reaction to statin drugs that he was taking for high cholesterol and advised him to stop the statins for a while to see if it goes away. It didn’t go away and in July, he tripped and fell while playing golf and had to have surgery to repair a torn quadriceps muscle. In retrospect, we realize that he probably tripped because his foot was starting to drop, a common early sign of ALS. The surgery and rehab was very painful and he hated being dependent on me for everything during his recovery. It was a terrible foreshadowing of what was to come. Although we didn’t know it then, he would never really get better or walk normally again. After many painful tests, Tom was finally diagnosed on October 2, 2007 at the UConn Medical Center.
TOM: My favorite thing was coming to work each day. I loved interacting not only with kids, but with my colleagues, administrators, the support staff and the custodians. It was a joyous place to work. Plus, I got to team teach for 25 years with Paul Schluntz in an integrative Social Studies and English classroom. That was a privilege.
To me, the Middlebrook family always looked out for each other in good times and bad. In the 70’s and 80’s we did many things together, like chaperone dances and go out to dinner beforehand, we ran Field Day, we put on musicals with the kids. In later years it took on a different tone. If someone was sick, engaged, had a baby, got married or experienced loss, we all went through it together. For us, this family has continued to give us remarkable support via participating in the CT. ALS Walk, sending cards, letters, emails, and with visits. When I was first diagnosed they all chipped in and bought us front row tickets to a James Taylor concert in Cleveland. The support has been stunning.
TOM: The Fellas were originally a group of 12-15 guys who played basketball for 45 years together. We were a group of teachers, coaches and even former students, like Mark Ketley, who formed a bond that carried way beyond basketball. Six of them came to Fredonia, NY last summer for the local ALS Walk to surprise me. We play Fantasy Football together. Some have retired and moved south, but we’re all in touch, all the time, especially the “Core Four” of Paul Schluntz, Mark Ketley, Bill Gerundo, and Lynn Austin.
DIANE: The Fellas are simply incredible. When the “Core Four” first started making their annual fall trek, they would take Tom to a Buffalo Bills game. For the past few years, they have all watched the game here in our living room. I don’t think they thought they’d still be coming up here eight years later! I think their friendship, support and humor has contributed to Tom’s strength in a huge way. I honestly believe that if I called them and said we needed them, they would get in the car and start that seven-hour drive.
DIANE: When Tom was first diagnosed, the prognosis was pretty grim and we were devastated to think that our life together was all but over. But as I look back on the years since his diagnosis I am astonished at how much happier and richer our lives have been than we were led to believe they would be. We were able to travel to visit both our children several times, we went out to dinner regularly for several years, we have had many, many visitors to our little jewel of a town here in western NY and we have spent a lot of time just being happy together. The original prognosis of 3-5 years has stretched to 7 and Tom continues to fight, especially since the birth of our grandson in February. Tom has been able to maintain his positive outlook on life for almost 8 years now but it’s getting harder for him. He has progressed from a cane to a walker, to a scooter, to a power wheelchair. He is paralyzed from the neck down, he breathes with a ventilator and he has begun to lose his voice, but he continues to inspire everyone who knows him.
Here are two quotes that sustain me:
“Everything will be OK in the end. If it’s not OK. it’s not the end.”
“On particularly rough days when I’m sure I can”t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that is pretty good.”
What has been the most difficult thing about ALS?
DIANE: Seeing Tom suffer.
TOM: Slowly losing control. Surprisingly, not so much the physical things like sports and moving about. I was doing pretty well as long as I could use my iPad to communicate and control my environment like music, TV, texts, emails and games. The knock-out punch is losing my voice. It’s been very difficult not to be relevant to the conversation. I have so much to say; it’s there in my head, but I can’t get it out. I’m blessed to have kept my voice for almost 8 years.
What do you think about the Ice Bucket Challenges?
DIANE: I am completely overwhelmed by the way this has taken the world by storm. This Ice Bucket phenomenon will do so much good in terms of funding for research and helping families who are struggling to get through this. The ALS Association and the Muscular Dystrophy Association do a wonderful job helping people with ALS and their caregivers cope with the disease. They provide a great deal of support, medical equipment for patients and funds for caregiver respite, all of which are essential. The extra money that this has raised will be a blessing to the many people that The ALS Association serves and hopefully, it will bring the researchers closer to a cure. And we love seeing our friends and family members douse themselves with icy water! We laugh and scream right along with them as we watch their videos.
TOM: On a personal level, we get a thrill each time a a video is dedicated to us. It makes us laugh and cry and realize how many good times we spent with each of these people. It’s colleagues, their children and grandchildren, people from all walks of life from childhood right up to retirees.
What do you want people, after reading this article, to have learned about ALS, whether it’s a need for more research or what the ice bucket challenge can do?
We are thrilled that the Ice Bucket Challenge has made people aware of what ALS really is and how it affects people who are diagnosed with it. Hopefully a lot of those funds that have been donated will go to more research and to helping families meet the enormous medical costs that come with ALS.
The good news is that ALS patients are fast-tracked to Medicare no matter how old they are. The bad news is that while Medicare covers a lot of medical costs, it doesn’t cover everything. For example, it doesn’t cover home health aides (which become a necessity) or basic daily supplies like bed pads, creams to prevent bed sores, adaptive clothing, adaptive eating utensils, supportive pillows, and many, many more items that are essential to the comfort and well-being of the patient and caregiver alike. Costs like handicapped accessible vans, making the home accessible to a wheelchair, and adding a handicapped accessible bathroom or a stair lift can easily run up to a hundred thousand dollars. That’s where the ALS Association really helps out with loan closets and grants to families who are quickly running through their savings or just struggling to make ends meet.
Most people, including many medical professionals that we have encountered, know little to nothing about ALS. It’s not a common disease and only 30,000 people in the US have it. Because of the rarity of this illness, naturally it doesn’t receive the funding for research that many other illnesses do. The fact that there is no cure or even any treatment that does anything but extend a patient’s life by two or three months is very distressing. The diagnosis of most diseases comes with hope for a cure or at least remission. ALS is always terminal.
It affects everyone differently. A small percentage of people with ALS have the hereditary version and others have what is called sporadic ALS, meaning it is not passed on to family members. Most people eventually lose their ability to walk, to speak, to breathe, to eat and to move any part of their body. Their motor neurons begin to die, which in turn affects all voluntary movement. There is a perfectly good mind in there, even though the person may speak with great difficulty. People are completely aware of what is happening to their body.
It’s a very cruel disease.
Please consider donating to alsa.org. or contributing to the walk Tom’s Fellas and Ladies are doing in October.