Todd Kelly Fights ALS - For Himself And Others

by Kirby Adams

You have heard his voice on WDJX radio for over a decade.  You many have even taken part in some of his creative DJX promotions. But three years ago we all started seeing a lot more of his face. 

Three years ago Todd Kelly was diagnosed with Amyotrophic Lateral Sclerosis (ALS) more commonly known as Lou Gherig's Disease. Kelly says at the time he knew almost nothing about the disease and neither did his family or friends. He did not know how the disease would cause his body to deteriorate, or that his life expectancy would plummet to only three or five years longer.

Now three years into his disease, Kelly works tirelessly to bring awareness about ALS to our community.  He is on TV promoting his annual walks to defeat ALS.  Newspaper and magazine articles have written about this caring and compassionate volunteer who was working to help others even before his own diagnosis.

"I have always taken part in charitable work.  For instance, I have worked on the Jerry Lewis Telethon for 27 years. Now I am seeing it from the other side," said Kelly.

Knowing a thing or two about charitable work, Kelly started a non-profit health organization to fight ALS through research and improve the lives of those living with ALS in our area.  The Todd Kelly Foundation supplies wheelchairs or canes to those with ALS, plus current information and education materials to ALS patients and families, caregivers, researchers and members in related health fields. Kelly hopes the foundation, which has raised close to $40,000, will eventually help fund ALS research in our area. 

Kelly first noticed something was not right with his body when he experienced charley horses in his legs one day while moving furniture. At first he ignored the pain, but after it continued to worsen he mentioned it to his doctor.  Since his diagnosis, Kelly has kept a large circle of friends and coworkers updated on his condition.  A typical email from Kelly will look like this one. I include it because Kelly's words mean much more than mine when describing what is happening to him.

"I recently had another thorough comprehensive diagnostic workup done which consisted of electrodiagnostic tests including electromyography (EMG), nerve conduction velocity (NCV), a spinal tap and imaging, including x-ray, magnetic resonance imaging (MRI), and/or myelogram of cervical spine muscle and/or nerve biopsy and checking of thyroid and parathyroid hormone levels. With that said, I have spoken with the doctor this afternoon, I wanted to take the time to share some information with you. Some of the things you will read will make you sad, but I wanted to be straightforward even though it will be hard for some to read it. These are some of the symptoms that I have and will start to notice from my ALS:

•  Twitching and cramping of muscles, especially in the hands and feet

•  Impairment in the use of the arms and legs

•  Abnormal fatigue of the arms and/or legs

•  Uncontrollable periods of crying, which will come from the pain

•  Slurred or thick speech and difficulty in projecting the voice

•  More advanced stages: shortness of breath, difficulty breathing and difficulty swallowing

•  The hands and feet may be affected first, causing difficulty in walking or using the hands

"For some, that is why you are noticing that I am using the cane, and eventually I will be using two. I appreciate everyone's patience. I have been a little moody and not the most pleasant person to be around but I know that each of you understand and will be there with all the support you can give.

"As you probably know, managing these symptoms is a process that is challenging and very difficult but all the love and support from each of you makes each day go a lot easier.

"Thanks again for all the love and support that I receive. Each of you touches me in a personal way and I will treasure them always."

I am sure Kelly has down days, but I have never personally seen him in a bad mood or depressed.  I asked him how he keeps his positive outlook.  "Well, I read to children at Kosair Children's Hospital.  That's my therapy." Kelly also likes to go into schools and read; so teachers, give this guy a call.  He reads an awesome "Green Eggs and Ham!"

Something else that is keeping Kelly positive is due to something he started the moment he heard his diagnosis.  "Instead of waiting for weeks or months to be told what action I needed to take, I got going right away." Kelly says he got ahead of his disease by starting a workout program to keep him stronger as long as possible.  Even so, Kelly admits he gets tired more than he used to.  "I can't go for 12, 13 hours straight the way I used to. That bothers me because I want to keep going."

There is so much Kelly feels needs to be done - so many people to educate, others to help and kids to be read to. 

If you'd like to read more about the Todd Kelly Foundation visit www.tkfoundation.org.

Kelly's next fundraising event is the 3rd Annual Walk to Defeat ALS, set for October 17.  I know that seems far into the future, but I want to be sure you mark your calendar and get into shape to take part.