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Art provides relief to Parkinson's patient

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Doctors say exercising brain can benefit people like Harford County artist
Andrea Walker

The Baltimore Sun - Sometimes it's easy for Vincent Vono to feel down about having to live with Parkinson's disease.

The disease has snatched his independence and sense of a normal life. The 76-year-old stopped driving last year as his motor skills slowed. He doesn't cook much because it is too exhausting to clean up afterward. Even a short walk across his tiny apartment is a task some days.

But for all the disease has taken away from Vono, it has fostered and strengthened a love for art that first developed when he was a boy.

Painting is the one thing that still comes easily to Vono. When he sets his easel up in his living room, Vono can paint for hours. As he paints portraits of his grandchildren or of the madonna and child, his tremors subside and for a moment he forgets he is sick.

"It fills the gap," he said. "It erases all of the garbage out of my head."

As in all Parkinson's patients, Vono's brain no longer effectively produces the chemical dopamine, which helps control muscle movement. Without dopamine, his brain cannot send messages to his arms, hands, legs or feet.

Sometimes his body seems to have a mind of its own. His hands or feet will move in some direction he doesn't intend. Then there are the tremors. They change in intensity depending on his mood — growing stronger when he's anxious, angry or excited.

"It knows my emotions," he said.

Vono started to detect something was wrong in 2007. He had just moved to Maryland to be close to his son. He was still mourning the death of his wife, whose life was taken by a brain tumor the year before.

The tremors started gradually on the left side of his body. As he drove, his hand would shake. He'd hold his hand very tight and still to make it stop. Then his foot would "start doing a dance," he said.

When the doctor arrived at the Parkinson's diagnosis, Vono was scared, confused and angry all at the same time.

His functions have deteriorated since the initial diagnosis. While medication to replace his body's dopamine helps with some of the symptoms, nothing can ultimately stop the disease from taking over his body.

A couple of years ago, Vono reached a point where he couldn't care for himself. He wasn't taking his medicine regularly or eating healthfully. He moved into the Four Seasons assisted-living home in Bel Air.

Looking to achieve some normality in his life, Vono set up his easel on the balcony. He would sit outside for hours painting landscapes or pieces with science-fiction themes, such as tablecloths floating in the air.

The owner of the Four Seasons, Roger Stanley, immediately noticed his new resident's talents. He displayed Vono's work in a common area of the home.

Stanley also saw how painting helped Vono deal with his illness.

"He became completely still when he painted, and he could focus on the painting," Stanley said. "And the tremors would just stop."

Dr. Liana Rosenthal, a Johns Hopkins doctor who specializes in neurological disorders, said exercising the brain can help patients with disorders like Parkinson's cope with the disease.

It's not exactly known what happens in the brain, but keeping it active helps improve motor skills, said Rosenthal, an instructor in the neurology department at the Hopkins School of Medicine.

Rosenthal said that for Vono, painting has probably become an informal form of physical therapy. Doing something he likes also helps his mood, she said.

"He is also doing an activity that he enjoys and spending time not thinking about his disease and not being sick," Rosenthal said. "We always encourage patients to find an activity that they enjoy and do it. Staying active is one of the best things people with Parkinson's can do."

Vono's love for art spans years. He went to an industrial-arts high school in Brooklyn as a teenager and was an illustrator for the Army during the Cold War.

But he ultimately pursued a career in advertising, practicing his art as a hobby. He worked his way up in the pharmaceutical advertising world, eventually becoming an art director.

"I wanted a paycheck," he said.

Throughout the years, he would take art classes on the weekends and find solace in painting as he and his wife raised a family. If he had it to do all over again, Novo said, he might pursue a career in art instead of advertising.

He takes art classes twice a week at the local community college. A friend picks him up for class. His work recently placed in an arts and crafts show. Vono is thinking of trying to sell some of his pieces one day.

Vono's first love has now become the center of his life. Because of financial reasons, he recently moved from assisted living into his own apartment in Abingdon. But his easel sits in his living room in front of large windows with plenty of sunlight.

"It's perfect for painting," he said

Note from John Pepper:

I have attached one of my own paintings, which is of a cottage in England. It required a great deal of patience and steady brush strokes, in order to produce the desired effect. What Vono says, is very true. I can concentrate very hard on keeping my hand, or both hands, very still, when they normally shake uncontrollably. Why not give it a try?

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Computer Games Help People with Parkinson's Disease

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Elizabeth Fernandez

USCF - Playing computer-based physical therapy games can help people with Parkinson’s disease improve their gait and balance, according to a new pilot study led by the UCSF School of Nursing and Red Hill Studios, a California serious games developer.

More than half the subjects in the three-month research project showed small improvements in walking speed, balance and stride length.

UCSF and Red Hill were the first research team in the United States to receive federal funding in the burgeoning field of low-cost computerized physical therapy games. Unlike off-the-shelf computer games, these specialized games encourage scientifically tested specific physical movements to help people with functional impairments and diseases.

Teams at Red Hill and UCSF collaborated to produce nine “clinically inspired’’ games that were designed to improve coordination in people with Parkinson’s disease, a chronic, progressive neuromuscular disease characterized by shaking, slowness of movement, limb and trunk rigidity. The clinical team members at UCSF focused on specific body movements and gestures that their previous research had shown to be beneficial for staving off the physical declines of Parkinson’s.

The UCSF team was led by Glenna Dowling, RN, PhD, professor and chair of the UCSF Department of Physiological Nursing, and Marsha Melnick, PT, PhD, a clinical professor in the UCSF School of Medicine’s Department of Physical Therapy and Rehabilitation Science and professor emerita of the Department of Physical Therapy at San Francisco State University.

The Red Hill team then designed physical games, similar to Wii and Kinect games, in which subjects win points by moving their bodies in certain ways. Each game has multiple difficulty levels so that the clinical team could customize the therapeutic games for each subject’s particular abilities.

“Each subject found his or her own gaming ‘sweet spot’ — the spot where the physical challenge was not too hard, not too easy, just right,’’

said Bob Hone, creative director of Red Hill Studios and the lead principal investigator of the study.

“And when subjects mastered one game level, they often moved on to harder levels for more beneficial effect. The subjects improved their games scores while improving their gait and balance.’’

Red Hill developed a custom sensor suit with nine tracking sensors to analyze subjects’ movements with higher resolution and accuracy than is possible with consumer gaming platforms. The PC-based system sent encrypted data to a secure database allowing the research teams to track the subjects’ performance daily.

“From the data tracking we could see that there were some subjects who were playing the games more than the specified three times a week,’’

Hone said.

“Because this was a highly structured research study, we actually had to ask them to play less than they wanted.’’

The trial involved 20 participants in northern California with moderate levels of Parkinson’s disease. After playing the games for 12 weeks, 65 percent of game players demonstrated longer stride length, 55 percent increased gait velocity, and 55 percent reported improved balance confidence.

“These initial studies show the promise of custom-designed physical therapy games promoting specific movements and gestures that can help patients get better,’’

Dowling said.

“Now that we have this preliminary positive result, we want to conduct a longer term clinical trial with more subjects to confirm these initial findings.’’

The study was funded by two Small Business Innovative Research grants totalling $1.1 million from the National Institute of Neurological Disorders and Stroke — part of the National Institutes of Health.

UCSF is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care.

Red Hill Studios is an award winning serious games developer that creates interactive games for health, online science games, and immersive museum exhibitions. It also conducts research into new educational and health gaming paradigms. Red Hill is based in San Rafael, CA.
 

Note by John Pepper:

It is interesting to note that most studies relating to exercise, work on three times a week. This appears to be the optimum number of times we should exercise, thereby allowing the muscles to recover each time, after the exrcise.

 

Brain Exercises

Hi, this is John Pepper!

Have you ever heard the saying,

If you don’t use it, you lose it?

This is very true! Whether ‘it’ is your body or your brain:

Within seven days of use, muscles start to atrophy.

With the brain, whatever brain cells are not used regularly, soon get used for other purposes, when the brain is looking to open new pathways.

So, if we don’t regularly refer back to stored memories, they tend to be wiped out.

The best way to remember anything is to continually repeat what you want to remember. You did that as a child and it worked then! If you want to remember something that happened, you just have to play it back, in your mind, and the more you do that, the better your memory will be. If you repeat what you saw, or what happened, to other people, the more permanent that memory will be in the future.

It is very important to keep your brain active. One of the ways I did this was by writing computer programs. Later, as this became too easy, I started doing other activities, such as Su Doku puzzles. I had to increase the difficulty level as the puzzles got easier, until I got to the really difficult ones. At that stage I could not do all of them, but it is the trying that matters, not the fact that I could not do some of them.

You can train your memory in lots of different ways; a very effective means of doing this is through your computer, accessing websites, like www.lumonosity.com, or www.positscience.com, or else try  speed-reading or playing chess. I purchased a brain exercise program from positscience.com and after a month, I had done all the exercises and my scores had gone up really well. I could not believe how bad I was, at the beginning, but at the end, I could remember six different instructions properly. That was a huge improvement from when I started, when I battled to remember even two every time.

Parkinson's disease is not a body problem, although it might appear to be. It’s a brain problem, which causes many bodily problems.

You must concentrate on your brain and keep it sharp.

You can teach an old dog new tricks. You are never too old to learn. When you get older you tend to keep telling yourself that you are too old to learn anything new, and consequently, avoid lots of great learning opportunities.

We learn most from our mistakes -

SO! Go and make them...

As a result of the social circumstances, into which I was born in 1934, I did not get much formal education, so you might be tempted into believing that I must be less clever than many of you, reading this now. I failed high school and didn't even go to college. However, I did get a fair amount of informal education, by home study and through my extensive and successful business career.

I did learn a lot from reading up on as much Parkinson's disease research as I could, after I was diagnosed. I read all the issues of SPRING Times, which is the quarterly journal of the Special Parkinson’s Research Interest Group in Great Britain. I also read the weekly newsletter published by the Northwest Parkinson’s Foundation in Washington State, USA. I have extensively applied, what I have learned, to the way I live, and have made many mistakes, in my attempts to improve my quality of life.

I hate making mistakes ...

But without them, I would have been toast... I wouldn't have reversed my Parkinson's disease one little bit.

I tell my family that I no longer have a memory, I now have a Forgettery! I’m used to forgetting lots of things.

How did I sort this one out?  How can you do it...

ñ    through making extensive notes on things I want to remember,

ñ    using my mobile phone, for appointments and reminders

ñ    setting up email reminders

Get your grandchildren to teach you how to use this technology! Or would this embarrass you?

They can operate all these new gadgets, because nobody has ever told them that they don’t know how to operate them!

Since my diagnosis of Parkinson's disease, in 1992, I have learned to paint, and have painted lots of beautiful pictures over the last four years.

I have also made a CD of some of my favourite songs, which I have been singing over the past fifty years, mainly to old people in retirement villages. I found that they could not run very fast and they were not too fussy about who came to entertain them. They loved to join-in with me, and they enjoyed my naughty stories. My CD’s will not reach the top twenty, or even get onto anybody’s charts, but they were not made for sale. My CD's will be there, for my children and my grandchildren, hopefully to listen to one day, giving them pleasure in hearing my voice; especially when I am just a distant memory. They will also have my books and some beautiful paintings. Isn’t that an achievement for an ordinary fellow like me?

I now wish that I had even one of these articles or other representations of my parents, made by them, many years ago!

Regrets?

We regret most, those things that we have not done, way more than the things that we have done.

You will never regret doing as much as you can, with your brain!

John Pepper

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