|Phil Myers of Lakeport, Calif., has Parkinson’s disease, and is encouraging others with the disease to take part in the research that’s aimed at getting a cure. Photo by John Lindblom.|
LAKEPORT, Calif. – Phil Myers, a Lakeport resident, carried the recommendation of Dr. Jay Nutt, a world-leading neurologist in Parkinson’s disease research, into his membership in the Parkinson’s Disease Foundation.
Based on what can be immediately surmised it was because Myers has an upbeat personality, excellent communications skills, a good comprehension of the disease … and Parkinson’s.
The recommendation by Dr. Nutt, who is associated with the Oregon Health and Science University, was proffered two years ago in the wake of the death of Myers’ wife, Jackie.
Jackie Myers was the victim of a very rare Parkinson’s-like condition referred to as PSP – progressive supranuclear palsy.
“We went to Oregon because other neurologists – including the Mayo Clinic – could not diagnose it,” said Phil Myers. “It’s like Parkinson’s, but it’s not. It usually takes people within six to eight years. Dr. Nutt diagnosed it in five minutes.”
The Oregon doctor apparently also saw something in Phil Myers that could turn the man’s tragedy into something far more positive.
“He felt that I was the kind of person who could work with individuals with Parkinson’s,” recalled Myers, who, at age 70, is a retired electrical engineer. “He put the recommendation in (to the PDF) and I was accepted and went to Chicago for a few days of training.”
Among Myers’ most important functions is to encourage people with Parkinson’s to participate in research.
“To do that well you have to know a lot about Parkinson’s,” he said.
Myers obviously does. Last month in Oregon he addressed the issue of clinical trials and why people with Parkinson’s should participate in a 20-minute turn at the rostrum of a Oregon Health and Science University symposium attended by 126 people.
Presently Myers is partnered with two other men, Bill Biggs and Charlie Lunt, in an effort to establish a Parkinson’s support group in Lake County.
“My job,” said Myers, “is to make sure that the patients and people with Parkinson’s hear about the research. So I think there is plenty of need for us to have a Parkinson’s support group, let whoever wants to come to it come and we’ll talk about the issues and what the different treatments are when you have Parkinson’s you feel a bit alone.”
One of the functions of the group sessions would be to help Parkinson’s victims get over the feeling of being so alone.
To ensure that Myers’ message is interpreted the way he intends, herewith is the text of an email he created.
“If you have Parkinson’s disease and would like to talk with others with the disease you may want to participate in a Parkinson’s Support Group. We would discuss symptoms, current treatments, ongoing research and helpful hints. If you are interested please contact either Bill Biggs at 707-279-8183 ( firstname.lastname@example.org ); Phil Myers at 707-263-4624 ( email@example.com ) or Charlie Lunt at 263-4939 ( firstname.lastname@example.org ). ‘Neurology Now’ says that every 10 minutes a new American is diagnosed with Parkinson’s disease.”
Nationwide, it is estimated that a million Americans have Parkinson’s disease.
If anyone wants to dig deeper into research about Parkinson’s, Myers recommends contacting UCSF “which has a very good Parkinson’s center.”
To get more Parkinson’s patients to participate in clinical trials what needs to be done, he said, is to educate them to what the trials are all about and why they should be involved.
“ … And I think I participate better with people as opposed to have a doctor telling them this,” he said.
“The reasons people are reluctant to get involved in clinical trials are multiple,” Myers added. “One reason is that half of them are going to get the placebo and half are going to get the real drug. ‘What if I get the placebo? It will be a waste of time,’ they’ll say.
“Another reason is maybe they don’t even hear about the research because the doctor who has been treating them doesn’t want to get them involved with other doctors and maybe take them away as a patient. It’s the money angle. I hate it that they’re correct and a lot of that is happening,” he said.
If group sessions for people with Parkinson’s come to pass in Lake County, there is indeed much to talk about. One topic, the mortality rate.
“Very few people die from Parkinson’s,” said Myers. “They catch pneumonia or they fall and hit their heads. The disease causes a slowness in you but doesn’t (directly) cause death.”
The abiding concern of research into what causes Parkinson’s will continue to be talked about. Most often mentioned are the preponderance of head injuries, with Muhammad Ali as a prototype, but no clear-cut relationship exists.
A chemical cause also is being seriously studied. Extensive use of insecticides, defoliants and other sprays and a higher incidence of Parkinson’s has caused the agricultural Central California area to come under the microscope. But again, so far there’s nothing substantial to clearly make that link.
“There are several questions that are unanswered,” said Myers. “What is the best treatment? How do I evaluate the different treatments and decide which one to deal with? We need to get together once a month to talk about all this.”
Myers is optimistic that within the next decade a treatment for Parkinson’s will emerge that will stop the advancement of the disease, although not one to prevent its occurrence.
As to symptoms of his own Parkinson’s, he raises a slightly trembling right hand. Come what may, Myers is committed to a positive disposition.
Will his symptoms increase?
“Probably,” he replied without changing expression. “I may lose my ability to walk. That’s why I’m going out and talking to people now.”
So how can he remain so outwardly calm?
“Why not?” he asked. “Life is precious. It’s a gift. Enjoy it. There are bumps in the road, but a positive attitude can do a lot for you.”
Email John Lindblom at email@example.com .