Home > People > Jim Maurer

Hello Hullonians

Faces of Parkinson's:
An Interview with Hull's Jim Maurer

By Cindy Beth Bittker

Many wonderful things have happened in my life as a result of publishing hullmagazine.com. Tops on my list is meeting Hull resident, Jim Maurer, a man who has given me hope and inspiration as I learn to live with Parkinson's disease. And I do believe, along with Jim that optimism and hope are key to slowing the progression of this disease.

Jim was diagnosed 20 years ago at the age of 55, and his contributions to the effort to cure this disease would fill half of this website. I hope the readers of this article will take the time to read about Jim's advocacy work and support of both people with Parkinson's, and the people who care for people with Parkinson's in Medtronic's New Hope for Parkinson's: Jim Maurer: Man on a Mission.

Jim's mission for the past 20 years has been to learn as much as he possibly can about Parkinson's disease, and to use his knowledge to advocate for research and funding to cure this disease.

When he was first diagnosed 20 years ago, long before we could obtain information on the Internet, he wrote to the top 50 neurologists in the United States to get the latest information on Parkinson's disease treatments and research.

"He received numerous letters in all and published them in a revolutionary article called Reasons for Hope. The book outlined the promise that various treatments held not only for relieving the symptoms of Parkinson's disease, but also for finding a cure for this chronic and debilitating disease."
[ From Medtronic's New Hope for Parkinson's: Jim Maurer: Man on a Mission ]

Jim joined a Young Onset Parkinson's Support Group soon after his diagnosis and touched the lives of many people with Parkinson's and their families with his support, critical information and ability to impart hope into their lives. He later went on to lead the group when Ken Bernstein who had been leading the group assumed a more national role in Parkinson's disease advocacy.

"In 1993, Jim, along with Ken Bernstein, achieved something that at the time was considered monumental. He was asked to join the board of directors for the APDA. They used their positions on the board to talk with various senators and members of Congress. What they discovered was that Washington was not getting a clear message about what the issues related to PD truly were. At the time, there were seven or eight PD organizations in the United States and it turns out that they had never sat down at a table together. They were run in many cases by well-intended people with family or friends with PD, and each group, it appeared, was appealing to Congress for different things."

"My personal intuition is that Jim recognized that these groups needed to collaborate, to go to Washington with one voice in order for positive change to happen in the area of PD legislation and research funding," says Doug Holmes."

"Jim played a large role in the Parkinson's Action Network (PAN) grassroots campaign to encourage passage of the Morris K. Udall Bill, which signified a major turning point not only in PD research but also in public recognition of the disease. Shortly thereafter he joined the newly formed Parkinson Alliance, an organization whose mission is to raise money for pilot research. Jim serves as director of research communications, providing up-to-date information on grants made by the foundation as well as newly developed treatments, medications and surgical techniques."
[ From Medtronic's New Hope for Parkinson's: Jim Maurer: Man on a Mission ]

Jim has traveled throughout the world networking at the highest levels of government and research. He has met with such well-known "parkies" as Michael J. Fox, Janet Reno, Mo Udall and Mohamed Ali.

I was inspired by Jim before I even knew of all of his amazing accomplishments. He is 75, living with Parkinson's disease, along with many other serious health problems. He came to visit me at my house on the bay on a day that was so windy I could not even step outside to pick up my mail. I was worried about him going down the front stairs and asked him if he was going to be okay. He replied, "No problem. I've got tail wind." Knowing that Jim is still going strong at 75 (he just came back from Washington, DC, attending his 13th Parkinson's Action Network ) gives me hope and inspiration for my own future.

That said, enjoy this interview with Hull's Jim Maurer:

You were first diagnosed at 55. What was your initial symptom?

My initial symptom was that my arm didn't swing. My daughter noticed it and she said I should do something about it, but I didn't because it didn't hurt. Later on I began having problems with my handwriting and that was a serious problem because it affected my work.

I went to see my doctor who lives next door to me. He got out a book and said "My God, you have Parkinson's." I didn't know anything about Parkinson's. I didn't even know how to spell it. I was very concerned. I kept a daily diary, literally, of every symptom including every time I sneezed. It was foolish. I should have just accepted my diagnosis and gotten on with my life.

I got involved right from very beginning. I heard that NIH needed people who could spend six weeks as an inpatient. I owned my own business and I could get away. So I went down to NIH in Bethesda and spent six weeks as a research guinea pig. That's how I got started learning more about Parkinson's.

How debilitating was it at the start and how many years did it take until it got a lot worse?

I probably went five years before it became difficult to work and do other things.

I probably was at stage three of four stages before I had the DBS ( Deep Brain Stimulation surgery.) I had dyskinesia. I was shaking all the time. My DBS was like a resurrection. I could do everything again. (Jim had his DBS in 2003.) Just now I am starting to have problems walking, talking and writing. But otherwise I am fine! I am also on medication for Parkinson's disease.

Has having Parkinson's change your outlook on life?

I'm still very positive on life. Part of the treatment is to be positive about the outcomes. With the new medications, they just continue to add years onto your life with Parkinson's.

How did it change your life personally?

Oh, it changed it a lot. I had planned to work forever and I couldn't. I lost my business. I had a mail order business selling products for dogs and cats. I made a typical mistake of an entrepreneur. I did everything myself rather than delegating. It really wasn't sellable without me. I was pretty useless by about 59. I kept a pillow in my office, would put it on my desk, put my head down and take a nap. And it wasn't good for business!

You've been very active in advocacy for Parkinson's funding and research.

I've been down to Washington, DC every year for 13 years straight. I was just there last week and met with Congressman Delahunt, who has been very positive about Parkinson's.

There is a caucus of congressmen who belong to the Parkinson's group and he is a member of that. There might be 20 members.

In your opinion, what is the outlook for the treatment of Parkinson's?

14 years ago most people in Congress, like myself, didn't even know how to spell Parkinson's. Each year it became more important because someone in office either had Parkinson's or had a mother or father that had Parkinson's.

What do you wish people knew about Parkinson's and people with Parkinson's?

That Parkinson's is the one illness that is closest to being cured. If we had a little more money we could cure Parkinson's. If you travel the world and talk to leading neurologists and scientists they will tell you that Parkinson's is closer than any other illness to being cured.

What does being close mean?

Everybody asks me, "When is there going to be a cure." The answer is, nobody knows. Stem cells are about a decade away.

From your perspective, what is the most promising treatment or method of stopping the progression of the disease?

It is stem cells. We spent most of the last week at the Parkinson's Action Network in Washington, DC discussing stem cell research with the Congress.

What advice would you give newly diagnosed Parkinson's patients based on what you know, from living for 20 years with Parkinson's?

Get the book, "Parkinson's for Dummies" because it tells you everything you need to know.

And not to be disappointed because you have Parkinson's. There are so many diagnoses that are worse. ALS is one of them. It's a death sentence. With Parkinson's you are going to live a long life, most of the time, with the new medications and there are all kinds of new medications.

There is a GDNF growth factor substitute that is very promising that does not have the side effects as the one Amgen took off the trial. The people who were taking it in the trials sued to Amgen to get it back, but they lost the case. But they were very happy with it.

What is most frustrating to you about making progress in Parkinson's research?

Michael J. Fox uses the analogy that there are trains that go 150 miles an hour even though we have tracks that only can handle 50 mph. The tracks for Parkinson's need to be updated — more money. It all comes back to money.

How long have you lived in Hull?

Three years. I came from Cohasset. I lived in Marshfield for 30 years. I lost my wife six years ago and my current wife lost her husband at the same time. Her husband and I had been in business together so we had known each other for 25 years. We were married five years ago. I sold my house in Marshfield and moved in with her in Cohasset. Three years ago we moved to a condominium in Hull. We tell people we've been married 73 years -- between the two of us!

What is your favorite spot in Hull?

I guess the gut. I like to ride out there. It's at the very end of Hull. It's as far as you can go in Hull. I'm a big windmill fan.

 

Back to Top