We Walked the Walk

The Orlando Walk to Defeat ALS is now history. Derrol and I turned in our pledge monies, although we still have a week to collect more donations if anyone is so inclined. I can't begin to tell you how important this event was. First of all it was an especially fun event and Lake Eola was a perfect venue. (See photo)

Everthing was so well organized and beautifully orchestrated. Even the parking went well and we were within a few steps of the activities. Volunteers appeared at just the right moment, helping the more than 1300 walkers with parking, check-in, food distribution, shirt sales, giving directions, shouting encouragement, and spreading the warmth and love that infiltrate the whole ALS Association.

It was so much more than we expected. Everything was donated and we had the most amazing live entertainment in the band shell by the lake. Corporate sponsors such as A&T really rose to the occasion. We have fallen for the jazz group Buzzcatz. Derrol played in a dance band years ago. He was a trumpet man, and we both appreciated hearing live brass.

Chick Fillet and Firehouse Subs and Domino Pizza provided food before the official walk kicked off And those Italian ices served at the end of the walk were a new taste treat for us. We walked around Lake Eola. It was difficult to stride for the finish line because everything was so beautiful. We wanted to stroll, to linger, to soak in the beauty of the foliage, admire the pagoda picnic area, and just enjoy this little oasis in the center of Orlando. It is surrounded by high rise businesses and condos. Yet a street lined with old houses now converted into law offices anchor the city to its glorious past. Such beautiful and diverse architecture.

Along the walk route signs had been posted giving statistics about the disease, encouragement and promoting the sponsors. And, at various spots along the walk route groups of red-shirted volunteers shouted out encouragement and cheered for us. The cheers were for so much more than finishing a walk. It is only a warm up of the cheers we'll all be giving when a cause, treatment or cure is found for this horrid disease.

Perhaps the best part was seeing all of those people and mingling in a crowd that accepts us just the way we are. Derrol felt so free of judgment and pity as he wheeled through the crowd and we felt like everyone supported each other no matter what color T-shirts they wore. There is a lot about using a wheelchair that we didn't expect -- opening doors, tires and sand, and the people who don't want him near them. But at the Walk he didn't worry about any of those things.

I wish I had the ability to organize and persevere and pull off such a delightful event with such a worthwhile cause at the heart of it. And do it on a shoestring! Looking at the faces around us I didn't see any half-full cups. What I saw was hope and a celebration of life. I hope the organizers drank their own cups full on the joy they brought about.

We needed that outing. We needed to know we aren't alone. And we needed to know that something is being done. We who usually feel so helpless are doing something to help find a cure and end this disease.

Derrol and I are still fizzing with the adrenalin and endorphins raised by joining with others in a worthy cause. If you have a chance to participate in such an event, no matter what the disease or worthy cause, do it. Connecting with others is the best medicine!

Taking a Walk; Saving a Life

This past Saturday Derrol and I headed out into the sunshine to join with hundreds of other people from Central Florida who are determined to find a cure for ALS.

The ALS Association fundraiser Walk to Defeat ALS couldn't have been more fun, although bittersweet. Derrol and I hadn't made a fundraising effort. We saw others who had. One group presented a huge check for $20,000.

T-shirts with photos of ALS victims past and present glowed in the sunshine. One photo we saw quite often was of Kevin Bailey. "Kevin's Warriors" was the inscription under a photo of Kevin in his power chair. Kevin lost his battle after five years this past January. His son and family and friends were all walking and had raised money to support research even though research will no longer help Kevin. Adele's Allies; Walter's Warriors, The Sensational Sorgis, and the simple yet poignant sign on several shirts: "We're Walking for Mike." Adults of all ages, some in wheelchairs, some using walkers, some pushing strollers or leading dogs who also wore t-shirts, all came together at Blue Jacket Park near Winter Park, Florida -- a lovely place to take a walk and defeat a disease.

Derrol and I felt like we were the lucky ones there. Derrol is alive. He still has hope that the research will come in time to save him. He's also fortunate that his form of ALS is slow progressing. Where most people die within six years of diagnosis, his has taken twice that long to weaken him to the point that he just now is beginning to use assistive devices like a bi-pap machine at night to aid breathing and a cane or wheelchair during the day.

There was talk of findings, an Italian study shows particular promise of stopping the disease's progression. Another mentioned stem cells. And then I looked at the face of Kevin Bailey's son and knew how hard he was struggling to be happy over these findings. But instantly it became clear that no matter what happened this day, Kevin was still dead after battling that despicable disease for five years.

In the Goldsmith family we have reason to take heart. Even if the research doesn't help Derrol, it will help other family members. Because ours is a rare form of ALS called Familial Amyotrophic Lateral Sclerosis -- the inherited form. So we didn't just walk for Derrol on Saturday. We took our first steps toward fighting for our sons, grandson, cousins, brothers, and sisters, nieces and nephews.... The family has already lost more than a dozen loved ones to this disease, we don't want to lose any more. The Goldsmith clan also serve as great guinea pigs since we can be studied for clues to why some members develop the disease and others do not. We have all come together to participate in a study conducted by the ALS Clinic at Mayo Clinic in Jacksonville. Together maybe we can give researchers the clues they need to find a treatment, a cure or hey, maybe even a cause.

As I write this Ken Patterson, a former NASA engineer, now full-time ALS victim, is tooling along the highways in his little power chair headed from Orlando to Washington D.C. Once he completes the 21 day journey and arrives in our country's capital, he and a group of dedicated people will speak before Congress, meet with their congressmen, and advocate for funding and legislature to help defeat ALS. Because you see, there is an even greater threat from this disease. It is targeting our military. I'm seeing statistics that site our soldiers returning from Iraq are contracting the disease at a 75 percent higher rate than the general population. We must find a cure.