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.

Faithfully Departing Posted at Notred Dame Magazine

Just a note to say that an essay very close to my heart has been posted at Notre Dame Magazine. It concerns a battle we're waging at our house against a horrific disease: Amyotrophic Lateral Sclerosis (ALS). Some may know it as Lou Gehrig's Disease. I wrote it to promote awareness, to reach out to others with such battles to fight, and because I want to make this disease pay.

My husband's family is stricken with the inherited form of that disease. He's lost a younger brother to it, aunts, uncles, cousins of all ages and now he is in the battle for his life. He's weaponless -- no treatment, no cure, no research that can even define the cause of the disease. Lots of theories, but nothing substantial to pin our hopes to. He takes vitamins and uses whatever equipment he needs to compensate for muscle loss.

Several organizations give us support and help. We owe so much to the ALS Association, the researchers they support and Rhonda Rittenhouse who keeps the monthly support meetings going. This monthly support group has provided us with new friends, information, and even some equipment that will give Derrol better quality of life. We've received monetary help through the MDA, Muscular Dystrophy Association. They help pay for equipment as well as quarterly visits to the ALS Clinic held at the Mayo Clinic in Jacksonville, FL.

We are so grateful to Dr. Boylan, clinical neurologist and friend, who runs the ALS Clinic and keeps giving us hope. Through him we attended an ALS Association conference for researchers in Tampa earlier this year. We were privy to the discussions concerning cutting edge research, most recent breakthroughs and best of all, we made friends with some lovely people from around the world. They are dedicating their lives to finding a cure for neuro-muscular diseases including ALS.

The first ALS Clinic Derrol attended caught both of us off guard. We sat speechless in a room at Mayo Clinic while specialists came to us. In one morning we saw more specialists than we had been able to see in the last seven years. They file in, do their tests, talk and ask questions, joke and smile and make us forget what horror has brought us there. He talked with physical therapists, speech therapists, occupational therapist, pulmonologist, well, the list continues. Whatever he needs to keep him functioning, they rush to help.

It has taken us a long time to 'admit' that we live with this disease. We'd like to just pretend it isn't here. But it just won't go away. So we acknowledge its existence and I'll be writing about it more in the future. You may already be familiar with the disease or a form of it if you read the book Tuesdays with Morrie by Mitch Albom or are familiar with baseball legend, Lou Gehrig's story.

The first question ALS victims ask each other is 'when were you diagnosed.' It is code for "How long do you have to live?" Most die within six years of diagnosis. Derrol, fortunately, has a slow-progressing form of the disease. He was diagnosed in 2005 and is just now getting to the point where he needs a wheelchair at least part of the time. Sadly we have watched other members of the support group decline from fairly independent to totally dependent with wheelchairs, feeding tubes and communication devices in mere months.

If any of you reading this are so inclined to help find a cure for this disease, please visit the ALS Association website and consider donating. By finding a cure for ALS, we quite possibly would also open the door to cures for Alzheimer's Disease, Parkinson's Disease, Muscular Dystrophy and many other neurological diseases.