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!

Where would we be without friends?

When the tough face
challenges,

-- their friends see them through.

That's the case these days as we reach out and ask for donations and support for the ALS Association, the Goldsmith Team and the Walk to Defeat ALS.

People have written checks, offered to walk with us, and asked what else they can do. Virginia Spiegel, a talented (soooo talented!) fabric artist has donated AND mentioned our cause on her blog and testified that the ALS Association is a worthwhile cause. The local quilt guild Cabin Fever Quilters is looking into contributing a raffle quilt so we can raise some more funds with that. Family and friends we haven't seen for more than a decade are demanding to know how they can give and what else needs done. New friends, neighbors, work place colleagues all want to help. And all of their prayers and good wishes keep us going as we face new challenges in our personal life.

We have never been ones to ask, we'd rather be the ones doing and giving, but in the last few years, we find ourselves on the receiving end of so many kindnesses and so much generosity that we can't think about it without getting tears in our eyes.

When Derrol's brother was stricken with ALS it was the 1960s and Tommy was 10 years old. The neurologists had no idea what it was, not even thinking ALS in one his age. Ironic -- he was playing Little League baseball at the time and was stumbling and falling -- these were his first symptoms. I guess he and Lou Gehrig had more in common than we ever expected. Tommy had just turned 18 when he died. He had wasted away to a near skeleton. His voice was gone, but he was as sharp as ever. For a boy/man of that age to watch his body turn on him and know there were no treatments -- no hope....

There were four boys and two girls in that immediate family and they all chipped in to help with Tommy's care and quality of life. Derrol, the oldest, would take Tommy to the high school and literally throw him over his shoulder to take him to classes -- up stairs and down -- rushing to not only get Tommy to his classes but Derrol had to get to his own. Everyone wanted Tommy to live life to the fullest. They all went to hockey games at the arena nearby and the hockey team adopted him as their mascot. Tommy's wheelchair still has a bumper sticker on it with the team's name and logo. All of these years later, he died in 1972, the wheelchair is a reminder -- as if we need one.

We look at our two grown sons and pray, "Not them, please not them."

We not only work for ALS funds to help Derrol, our sons, and to remember Tommy, but for my father. He had a similar neurological disease -- Alzheimer's Disease. We know that research in one 'tangle' disease as they call ALS, Alzheimer's, Parkinson's, etc. helps move research forward in all of them. Muscular Dystrophy is also related. So our efforts to help Derrol have a much broader service.

And, sorry, I can't seem to stop writing about this once I get started. One more thing. Our military men and women especially those who served in the Gulf War are from 35 to 60 percent more likely to get ALS than the general population. Now we see a cluster of ALS diagnosis in people who were involved with NASA and Patrick Air Force Base. There is a study going on right now to find out the common denominator.

Sadly most people stricken are hardy, athletic, healthy people whose muscles shrivel and waste and usually within 3-6 years they are totally incapacitated and die. About 90 percent of those diagnosed have no idea why they have it. It is called sporadic and hits for no seeming reason at all. Five to 10 percent have the familial or inherited form that Derrol was diagnosed with.

ALS Association funds research and offers support and supplies and equipment (at no charge) to patients of ALS -- I don't know what we would do without this group of people. Between our support group at ALS Association in Winter Park and the Florida Chapter as well as our dear friend Gary Presley, Derrol has quality of life and is learning about living with a disability.

Our friends running the Florida Chapter of ALS Association say we've set out a really tough goal to reach -- $5000. They're probably right. But I think their goal may be tougher -- a cure for ALS. We are 1/5th of the way to our goal -- with help we can make it! We live in hope, it is the only thing available to people with ALS until we find treatments and cures.

With help from our friends, we can get rid of this and many other nasty diseases that seem to target our best and brightest and bravest. Thank you for your thoughts, prayers, and donations. Just knowing that someone cares is a priceless gift.

If you care to donate, please click here and then push the Make a donation button, follow the directions and don't forget to hit SUBMIT! And please know how much we appreciate your help in this project we cannot complete alone.

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.