Riding with a purpose

Parkinson's patient raising awareness, funds for research

Wednesday, February 25, 2009

When Larry Bowen's friend suggested that they ride bicycles across the country, Bowen asked, "Why?"

"I never thought I would do something like this, but now we can do it for something important," he said.

Bowen, 57, of East Pennsboro Twp., and his friend, Ed Thomas, are taking part in a 2,600-mile, coast-to-coast bike ride sponsored by the Davis Phinney Foundation to promote awareness of Parkinson's disease and to raise funds for research.

They will leave Carlsbad, Calif., on March 20 and will bike through eight states -- California, Arizona, New Mexico, Texas, Louisiana, Mississippi, Alabama and Georgia, arriving in Brunswick, Ga., around April 30.

Bowen, a retired leatherworker, knows how important Parkinson's research is to the more than 1 million Americans afflicted with the disease. He was diagnosed with Parkinson's disease 17 years ago.

"This isn't about me," Bowen said. "It's more about helping find a cure for Parkinson's and encouraging those who have the disease that they can do things despite having the illness.

"This makes me realize that I can take on a challenge. If I can ride coast-to-coast with Parkinson's, they can do the normal things in life. Life would be boring without challenges."

Bowen and Thomas will ship their bicycles to Indiana, where they will be picked up and shipped to California. Bowen's 15-gear Trek touring bicycle is in the shop, being outfitted with new tires and having worn parts replaced.

"I decided to have some repairs done now, rather than have to do them along the side of the road," he said.

Bowen said he has a lot of support from family and friends in coping with his illness. Many of them already have made donations in support of the bike ride. Supporting Parkinson's research is as important to them as it is to him, he said.

Parkinson's disease is a brain disorder with no known cause and no cure. It occurs when a specific group of brain cells begin to malfunction and die. These cells produce a chemical called dopamine, a chemical responsible for telling the body how and when to move.

When approximately 80 percent of the dopamine-producing cells are damaged, the symptoms of Parkinson's disease appear.

The key signs of Parkinson's are tremors or shaking, slowness of moving, rigidity or stiffness and difficulty with balance.

"By the time you get your first tremor, you have already had Parkinson's for five years," Bowen said. "Someone finally put the name on what you are feeling."

Parkinson's disease affects men and women in almost equal numbers, according to the National Parkinson Foundation. It shows no social, ethnic, economic or geographic boundaries. In the United States, it is estimated that 60,000 new cases are diagnosed each year, joining the 1.5 million Americans who already have it. While the condition usually develops after age 65, 15 percent of those diagnosed are under 50.

There are a number of effective medicines that help ease the symptoms of Parkinson's disease. The medicines most commonly used will attempt to either replace or mimic dopamine.

Several new medicines are being studied that could slow the progression. Many promise to improve the lives of people with Parkinson's disease.

The Davis Phinney Foundation, based in Boulder, Colo., was established in 2004 by Davis Phinney, a professional cyclist who was diagnosed with Parkinson's at age 40. Phinney was the first American to win a stage of the Tour de France, the world's most popular cycling race.

The foundation is focused on promoting and funding innovative and progressive research into the benefits of quality-of-life therapies on Parkinson's disease.

"There is no cure for Parkinson's, but there is plenty you can do about it," Bowen said. "First of all, stop complaining as if you are the only person who has ever had it. Think about using your disability to make others more comfortable instead of worrying about yourself."

Bowen and his wife, Beth Acri-Bowen, went skydiving for the experience of jumping out of an airplane. They also have sailed the Caribbean, living off the reef and depending on what they catch for all their meals.

Bowen and Thomas have completed several "centuries," 100-mile bike rides, including one across parts of Ohio and Pennsylvania.

The coast-to-coast ride will be his longest bicycle trip, Bowen said. The participants will camp out or stay in schools, churches and an occasional motel.

"I feel fortunate to have the ability to do this," he said. "I'm sure there will be days when we don't seem to be making progress and I will want to quit, but I expect to stick with it."

Bowen said his hope is that his participation in the bike ride will make others aware that time has a way of erasing opportunities.

"Having Parkinson's makes you realize it's time to grab hold of your dream and do it before it gets out of reach," he said.

Patriot-News

Scenes from a Struggle with Parkinson's Disease

by Jesse Hardman

Weekend Edition Saturday, NPR, September 9, 2006 · After some initial hesitation, freelance reporter Jesse Hardman set out to tell the story of his father's struggle with Parkinson's disease. You'll find more information about this piece, and a discussion board, at Transom.org. There, Jesse and his parents, Bob and Susan Hardman, give background on the story.

Jesse Hardman

I have wanted to document my dad's battle with Parkinson's for a long time. As many reporters can attest, it can be a hard transition from the detached impartiality required for most journalism to documenting someone close to you. For nearly 10 years, thoughts of interviewing my dad felt forced -- and frankly, the idea scared me. Did I really want to know the difficult details of his battle with the disease? On a personal level, I had gotten into the habit of assuming he was OK, and only drawing from his general successes, not what is inevitably a progressive breakdown of the body.

While visiting my parents a few months ago, I woke up one morning and saw my dad was getting ready to go to a Parkinson's support event. I grabbed my recorder and a microphone and joined him.

Bob Hardman

I would say three things keep me going: my faith, exercise and a sense of humor. I have found meditation very therapeutic, as well as quieting of my body and centering my spirit. It is a constant in my life. I also find exercise walking, bike riding (which is sometimes easier than walking), yoga (which calms my body) necessary. "If you don't use it, you lose it!"

My sons help me with a sense of humor, like "Dad, you can throw away your electric toothbrush." Other than that, I keep trying ways, many alternatives, although I like to call them complimentary therapies: i.e., acupuncture, electro-magnetic therapy, glutathione, healing touch, reiki, massage and am now stepping into ayurvedic therapy. All have brought me into a wonderful smorgasbord of care that this world has to offer, some were more helpful than others, but all helped. I am blessed and so are you to have so many avenues to wholeness (holiness).

Susan Hardman

I am very proud of my husband, and sons for their courage and openess in sharing our journey with others. We laugh and joke and find humor a must. Our grandsons ask questions about why grandpa shakes and they get good answers, then they just go about their business.

I honestly don't know how I would be if I were in Bob's shoes. Probably much the way I am today: at times fiery and impatient, and at others patient and understanding. I am someone who likes to think there is nothing I can't do, or at least try, and Parkinson's gives me an opportunity to take on even more. Bob can't do it. I will. I'll drive 3,000 miles so we can go East. I can take care of the three grandchildren by myself. I'll learn to drive the boat, I need better balance, I need time out, I can say no.

Maybe this is one of my biggest learnings: What do I need to enjoy my life and still be a caring helpmate? This question is front and center on my plate. Listening to this [story] again today was very emotional for me. I was able to get inside our life in a way I can't when I am at home and in action. It had me being still and very thoughtful.

Jesse Hardman

What ultimately made me want to do more with these recordings than just a family archive was the actual sound of my dad's tremors. I feel like this sound in and of itself explains as well as any words what it is like to be in my dad's body. You can probably come up with a sound to represent most physical illnesses, but few as powerful as the sound of Parkinson's. I want people, regardless of what side of the stem-cell debate they are on, to hear that sound, to feel it, to Hear what is at stake for my dad.

Transom Discussion Board for "Bob Hardman: A Body in Motion"

This story was produced by Jesse Hardman, with help from Jay Allison

Gary’s Guys is for men who have Parkinson’s disease or are caregivers of PD patients

By JILL SHERMAN, DAILY SUN

THE VILLAGES — The denial that can come with the diagnosis of a disease often makes a person feel lonely.

Gary Ingram ultimately found comfort when he sought the company of people who, like Ingram, have Parkinson’s disease.

“I didn’t want to go to a support group because I didn’t want to be around sick people,” Ingram said. “(I found) just the opposite is true.”

There is strength in numbers. Ingram, who has had PD for 11 years, learned that discussing issues and sharing information gives PD patients the determination to stand up to their disorder.

All of this bolsters the devoted caregivers of PD patients, too.

“It helps me understand more what’s happening with my wife,” Village of Woodbury resident Sylvan Peterson said. “There’s a wealth of information these people have.”

Ingram is the organizer of Gary’s Guys, a men’s group for PD patients and the caregivers of PD patients, which meets every Monday morning at Chatham Recreation Center. Attendees drink coffee, eat doughnuts and talk.

“It’s just for the guys,” said Ingram, a Village of Chatham resident. “You have a sense that you can say anything you want in front of the men.”

According to Ingram, there are about 16 men in the group. They come from a variety of backgrounds — there is a nuclear physicist, a Corvette designer and a school administrator among them — illustrating that PD is nondiscriminatory about whom it strikes.

“These are down-to-earth guys,” Ingram said.

Like the man who formed the group, members are trying to face PD with positive attitudes.

“They’re just upbeat guys,” Ingram said.

Village of Glenbrook resident Frank Hof said he never feels apprehensive about the gatherings.

“This tends to be very informal,” Hof said. “There is no agenda.”

Because he is a caregiver for his wife, Hof appreciates the chance to discuss the problems he faces at home and learn how others have solved similar situations. It is also uplifting just to get some fresh air.

“Being a caregiver is a full-time job,” Hof said.

Gary’s Guys offers a two-hour time frame of socializing every week, which does a world of good for everyone involved.

“If you have Parkinson’s, you get kind of down and start isolating yourself,” said Ingram, who was bedridden for three months a couple of years ago. “(Gary’s Guys) gets you out (of the house).”

Newcomers are always welcome to join Gary’s Guys.

Male residents of The Villages who either have Parkinson’s disease or are caregivers of people with Parkinson’s disease are invited to join Gary’s Guys at 9 a.m. Mondays at Chatham Recreation Center. Call the recreation center at 753-4570 for information.

Jill Sherman is a reporter with the Daily Sun. She can be contacted at 753-1119, ext. 9253, or jill.sherman@thevillagesmedia.com.

Parkinsons Diagnosis, Just Exactly What Is The Process?

Diagnosing Parkinson’s Disease is, as with any other condition, a complex and uncertain process. With symptoms very similar to that of other neurological disorders, including a variety of different forms of the disease itself, the Parkinsons diagnosis requires an physician experienced in dealing with the condition first hand, and an ability to differentiate between the symptoms set synonymous with this and other conditions. Some related conditions take their course very rapidly, whereas some take time to develop. Similarly, some conditions are always present, whilst some are acute, therefore it is essential for the initiation of treatment that patients are diagnosed effectively and correctly. The patient may require observation for a period of time before proper Parkinsons diagnosis can be made, as there are no laboratory tests which can indicate its presence for certain.

The doctor will firstly begin his patient evaluation by looking at his medical history and conducting a general health check to see if there are any obvious signs of this, or any other condition in the past, or at present. A neurological test can be conducted to assess the range of movement of the patient, and highlight any problems which may arise and point towards the presence of Parkinsonism.

There are at present no diagnostic tests to identify the presence of Parkinson’s. Blood tests will seldom yield any results and depend on the specific nature of the patient’s condition. On the same vein, brain scans will very rarely reveal any conclusive results as any brain changes are chemical and would therefore be neigh on impossible to detect through traditional scanning methods. The best way in which diagnosis can be reached is through the experience and judgement of the physician, who must have dealt with cases of the condition and other related neurological disorders before to have a realistic chance of correct diagnosis. The diagnostician should be expressly familiar with the key characteristics of each potential condition, and take time to diagnosis to the best of his abilities. That way, treatment can begin immediately for the correct problem, and the patient can benefit from alleviation of the symptoms he is suffering, or will be suffering in the future. Additionally, this provides a good opportunity to discuss with the patient the realistic goals and longer term prospects, although again this is very much dependent on a correct and conclusive Parkinsons diagnosis.

If you are at all concerned about Parkinson’s and feel you have experienced some of the trademark symptoms, or alternatively a family member has previously been diagnosed with the condition and you feel you may be susceptible through genetics, it is strongly advisable to consult your doctor as soon as possible. This will give him the best chance of successful diagnosis, and will give you the best chance of beginning treatment as soon as possible. Although Parkinson’s can be a disabling condition, it can be well treated to make life comfortable for the patient, and there are many options to try and dampen the symptoms, so the best policy is always to consult your physician as soon as possible.

Clive Jenkins recommends the Parkinsons Disease Help Online website which provides comprehensive information on all aspects of Parkinson’s Disease. To find articles, tips and free information and advice check out the site here:
http://www.parkinsonsdiseasehelponline.com/