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The Five Most Important Actions Needed to Take Control of Parkinson’s Disease

I am not a doctor, I am a Parkinson’s Patient with 51 years of experience. These are the actions, which have helped me:

1.    Regular Energetic Exercise

2.    An MAO-b Inhibitor as the only Medication       

3.    Learn how to Take Conscious Control of all movements

4.    Manage Stress Levels

5.    Adopt a Positive Attitude

John Pepper

Parkinson's Didn't Stop His Space Walk

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Rich Clifford

CNN - It had been a little more than four months since completing my second space shuttle mission, STS-59, on the shuttle Endeavour.

I was finishing my annual flight physical at the Johnson Space Center Flight Medicine Clinic. The words from the flight surgeon were as expected: I was in great condition with nothing of note. Then I asked the doctor to look at my right shoulder because my racquetball game was suffering.

He asked if I had pain. I told him I wasn't in pain, but my right arm did not swing naturally when I walked. This comment must have set off some alarm, because he observed my walk down the hall and quickly said he would take me downtown to the Texas Medical Center the next day.

I remember saying, "I don't believe we can see an orthopedic surgeon that quickly." He merely noted that we were going to a neurologist.

Little did I know that next day would change my life so quickly. The neurologist spent five minutes with me before saying that I had Parkinson's disease. He added I would have to undergo several separate tests to prove that I didn't have some other neurological disorder. Parkinson's disease is diagnosed by the process of eliminating other possible diseases.

After several tests, the diagnosis was confirmed. This was December 1995.

To their credit, the flight surgeons asked me what I wanted to do about flying. I quickly said I wanted to continue with all activities, including standing in line for another space shuttle mission.

I kept my condition a secret to all, except my wife and my children. I assumed senior NASA management were told, but no one ever spoke to me about the disease. They protected my privacy.

I continued my normal duties and was subsequently offered my third shuttle mission -- STS-76, which included a planned space walk. The mission was highly successful. One year after that mission, I left NASA for a job in the private sector supporting human space flight.

With the exception of my closest friends and family, I kept my condition a secret for almost 15 years. My reason for secrecy was simple: People did not need to know.

Now I'm an advocate for Parkinson's disease awareness. Having Parkinson's disease is no reason to stop living life to its fullest extent. Yes, as the disease progresses I have had to change the way I do certain activities, but I continue to do them.

I have a keen awareness now of the stress my disease places on my loved ones who provide me encouragement and tender loving care. The caregivers to a person with Parkinson's are the people who give so much of their lives to care for a loved one. My wife is my caregiver and I am acutely aware of her sacrifices. Parkinson's disease affects more than just the patient. The patient needs to understand the caregiver is there to help.

So do not let Parkinson's disease control your life. You may do things slower, or you may not be able to do things you once did as easily. It is not the end of the world. Do not give up trying.

Boxers work to knock out Parkinson's symptoms

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Rock Steady gives people suffering from Parkinson's disease an outlet to improve their fitness.
Pamela Engel

USA Today - When Mary Yeaman was diagnosed with Parkinson's disease in 2006, she could barely bring herself to leave her house. Her muscles were weak, and she was having a hard time coping.

"I've always done sports and stuff like that, and it was getting to be too much just sitting and doing nothing," she said.

In 2007, she found Rock Steady Boxing in Indianapolis. She now attends classes every week and has seen her symptoms ease as a result of a rigorous regimen of punching, jumping, jogging and stretching.

"It makes my muscles stronger. I can walk better," said Yeaman, 64.

Rock Steady, founded in 2006 by former Marion County prosecutor Scott C. Newman after he was diagnosed with Parkinson's at age 40, gives people suffering from the disease an outlet to ease their symptoms and improve their physical fitness. Through boxing-inspired fitness classes, participants use exercise to slow the symptoms of a progressive neurological disease that causes tremors, muscle rigidity, loss of balance and cognitive, speech and vision impairment.

"Sometimes people get very discouraged when they are diagnosed with Parkinson's, understandably facing a disease that is progressive, that's going to worsen over time and that can take a big toll on them," said neurologist and Rock Steady board member Dr. S. Elizabeth Zauber.

"When they come to a gym and realize that ... there are people that are experiencing the same thing (and) there is something they can do about it to get better and perhaps slow down the course of their disease, then that improves their overall outlook. They realize they're still very capable physically even though they have a neurological disease."

Rock Steady offers 16 classes a week. The organization's 125 clients range in age from late 30s to early 90s.

Classes start slow with a warm-up before participants dive into more rigorous exercise. Coaches set up several stations throughout the small gym with a different exercise at each one. Participants punch hanging boxing bags and speed balls, jump rope and toss medicine balls.

The exercises at Rock Steady are based on boxing drills, and they're meant to extend the perceived capabilities of those suffering from Parkinson's. There are four different class levels, based on the severity of the symptoms.

Boxing works well to combat the disease because of the range of motion required in the exercises, Zauber said.

"I see all the time in my patients that start exercising or my patients that are exercising that they tend to function better," she said. "They have improvements in their balance, improvements in sleep, in mood and energy level."

The organization offers more than just physical improvement.

"It's a support system," said Joyce Johnson, executive director of the organization. "It's being able to come here where people understand the symptoms and challenges of the disease."

Yeaman said Rock Steady is the "best thing that's ever happened" to her and called her classmates her "second family."

"These people are always there for you no matter what happens," she said.

Classes are led by program directors Kristy Rose Follmar and Christine Timberlake. Follmar is a former professional boxer, and Timberlake is a certified personal trainer whose husband was diagnosed with Parkinson's in 2000.

Timberlake said she couldn't get her husband, Tom, "to do anything" before he starting coming to Rock Steady. About a month after he started attending classes, she said she saw a change in body, mind and attitude.

"He's completely transformed," she said. "He's making the most out of life."

Parkinson's affects about 1.5 million people in the United States. It currently has no cure.

"The Dopamine Chronicles": a local artist's take on Parkinson's

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Britney Glaser

KPLCTV.com - When a Lake Charles artist was given the diagnosis of Parkinson's disease, he feared that his days of sketching and drawing would be gone because of tremoring hands. What Marty Bee learned, though, was that his art could be his release.

That release has led to an artistic perspective of the disease in Bee's "The Dopamine Chronicles," a humorous take on Parkinson's from someone who is living with it every day.

"When I start a new drawing, what I usually do is put in a gridline to keep me straight," Bee said about the drawing technique he has had to tweak a bit since his tremoring hand starting challenging his art two years ago.

Bee was driving to Arkansas when he first noticed the uncontrollable shaking in his right hand. "It was tremoring, even though it wasn't doing anything," he said, "I was just holding my hand on the steering wheel. I thought, 'I think I want to get this checked out.'"

This McNeese State University visual arts professor would not take a diagnosis from just one neurologist. It took three until Bee accepted that he did indeed have this progressive brain disorder. "Holy expletive deleted!" he said about his reaction, "what am I gonna do, because my hands are kind of the things I depend on."

What Bee decided to do was art, with the goal of doing a print a day to keep his hand skills sharp. "I can already feel the anxiety leaving just as I'm starting to draw," he said.

Bee says drawing alleviates his Parkinson's symptoms. "As I'm getting into the drawing, my symptoms are lessening," he said.

Bee does not ever forget about his disease. Instead he uses it as inspiration in The Dopamine Chronicles to laugh and educate about everything from deep brain stimulation testing on rats to a witch's cocktail of medication and daily challenges. "This is the challenge of drinking coffee while you're driving with Parkinson's," said Bee as he showed off a picture of a very shaky hand holding coffee just inches from the cartoon face of himself in protective goggles.

The Dopamine Chronicles collection now contains nearly 200 prints, finding humor in the symptoms, the diagnosis and the treatment of Parkinson's disease. "I'm hoping that it brightens the day of somebody who's either being a caregiver or has Parkinson's or just wants to know more about it," said Bee, "we need the humor."

Bee says if there comes a day when he cannot keep drawing, there are other career options. "Things I can do with Parkinson's: I can be a maraca shaker in a Mariachi band," he laughed.

But that is not a path Bee needs to pursue just yet, as he sketches away the symptoms of Parkinson's disease. "It's my way of going ha to the disease," he said.

Bee says there is a fellow cartoonist with Parkinson's disease in Alaska that also sketches the humor of the disease. Click here to check out The Dopamine Chronicles blog and website.

The series will be on display at the 1911 City Hall in Lake Charles beginning June 14th and running through the summer.

If you have Parkinson's disease or are a caregiver, check out the monthly support group in Lake Charles. It meets the third Thursday of each month at 1:00 P.M. at the Henry Heights Community Center on East School Street.

An inspirational life: Flushing man with Parkinson's Disease amazes friends, family by staying active

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Sarah Schuch

Flint News - Jack Murphy doesn’t believe what he does every day is anything special, but his family and friends say he is an inspiration.

Just after his 50th birthday, Murphy’s wife, Sue, noticed that he wasn’t moving his left arm and it was just hanging by his side. When asked why he didn’t move his are, Murphy’s answer was simply, “I don’t know.”

Shortly after a doctor told him he had Parkinson’s Disease, a chronic, slowly progressive neurological disease.

But 25 years later at age 75 Murphy hasn’t let the disease slow him down.

“This guy is just amazing,” said Dale Kenney, who’s known Murphy for more than 30 years. “He’s constantly on the go. There’s no grass growing under his feet.”

Murphy’s speech is often slurred and his movement is slowed. Within the past couple of years even walking has become difficult, so he walks with the assistance of two poles to balance him.

A medication helps Murphy with his focus and coordination. But none of that has stunted his determination.

Since his diagnosis in 1986, Murphy has ran hundreds of road races including three marathons, nine 10-mile Crim races and other Crim races.

This year he participated in the 5K Crim walk finishing at just over one hour and 31 minutes in last place. But he finished.

About five years ago, Murphy had to give up running and focus on walking only.

“(Parkinson’s) curbs my activities,” Murphy said. “If you work hard ... hard work pays off. It feels good.”

Murphy also plays in a golf league during the summer and is in two bowling leagues on Mondays and Tuesdays now. He goes to the YMCA a couple times a week and walks the Flushing Riverview Trail.

“Imagine what he was like before (Parkinson’s),” laughed Sue Murphy, who has been married to Jack for 48 years.

Spirits have always stayed bright, she said. She’s never surprised at how much her husband does every day, because he’s always been one not to give up.

“He’s like the energizer bunny. He keeps on going. He really should be a spokesperson for Nike. Just do it,” Sue Murphy said. “(When he was first diagnosed) doctors said he would be in a wheelchair. So he switched doctors.

“When he goes to the doctors he wants to know how he can bowl better. Is there a pill for that?”

His enthusiasm carries over into most things Jack Murphy does, said Karen Popovits, Flushing Senior Center executive director.

Popovits has seen Murphy visit the senior center and participate in events on regular basis since she’s been there seven and a half years. Currently Murphy is mostly involved in a balance class, she said.

“He’s upbeat, enthusiastic. He’s encouraging to other people,” Popovits said. “He makes you feel good. His enthusiasm makes you say, ‘Hey if I’m this healthy why am I not out there doing this and that?’ ... He’s got more gusto toward life than most of us do.”

Murphy said he didn’t know what to expect when he was first told of his diagnosis. And he shrugs when asked if he thinks he’s an inspiration.

“(Doctors) told me I’m remarkable,” Jack Murphy said. “I just say, ‘Thank you,’ (when someone compliments me).”

Parkinson's Insights – My Story Part 1

 There is no doubt that, contrary to established thinking, the progression of Parkinson’s disease, can be reversed. Although it has not been done by very many people, the fact remains that I've done it, and many others have followed, and will continue to follow.

 My name is John Pepper and I have successfully reversed my Parkinson’s disease, to the point where I no longer need to take any Parkinson’s disease medication, since 2003, and nobody would ever know that I still have Parkinson’s disease.

 How did I do this?

 My case was quite unique, for the three following reasons:

1. My neurologist had prescribed a monotherapy of a unique type of Parkinson’s disease medication, which was the only medication that the manufacturers claimed - as a result of conducting extensive double-blind scientific studies on a wide range of patients – could possibly slow down or even reverse the progression of this condition. I know of nobody else, who has only been prescribed this type of medication and nothing else.

2. I was in the habit of doing regular energetic exercise, for over twenty years, before I was first diagnosed with Parkinson’s disease. I was therefore bodily very fit, which was not a unique occurrence amongst newly diagnosed patients, but it was, and is, not the norm; especially as it was accompanied by reason number one. I have continued to do rigorous exercise, since I was diagnosed, which is not common amongst Parkinson's patients at all.

3. I gave up my high-powered job, three months after I was diagnosed. I was aware that my job had become very stressful to me and I would have done anything at that stage to help me cope with the Pd. I also stopped singing in the church choir. It was not just the services that ate into my time it was all the rehearsals and the travelling to get there and back that was the problem. I wanted to simplify my life. I also left my Rotary club, which was not a burden, but I did not want to be amember who did nothing active in the club. Stress is one of the major triggers for many health issues. It affects many of my symptoms.

     The combination of a Monotherapy of a special type of medication, regular energetic exercise and the management of stress, all urned out to be the crucial changes I had made in my lifestyle that have reversed the progression of my Pd, and they made my circumstances unique.

In addition to these three unusual circumstances, I made the following changes to my life style, during the next eight years, after diagnosis:

1. I decided to change my type of exercise.

2. I learned how to control my movements by focusing my full attention on controlling each movement!

3. I examined and changed my whole attitude.

4. After having given up my job, and having experienced the huge improvement in my health, I came to the realization that ‘Stress’ had played a major roll in the progression of my Parkinson’s disease.

5. Many people ask me about diet. I have found only one food item that must not be eaten by Parkinson’s disease sufferers and several other interesting substances that should be avoided.

6. Two years after my diagnosis, I realized that I had to learn to manage my sleeping problems.

7. The last change I made to my lifestyle was to start doing regular brain exercises.

I hope you have found this Insight helpful.

John Pepper