Living With Parkinson’s

 

ParkinsonsJune15-570Parkinson’s disease is a degenerative progressive neurological disease that, today, effects over 1 million people in the United States. That number is expected to double in just 15 years. While today there is no cure, there are many things that can be done to help people living with Parkinson’s have an improved quality of life. The following stories are just two examples of people living with Parkinson’s.

Rolland Grote

April 17, 2015

My story begins in 2010 when I started losing dexterity in my right arm and hand. I thought it was from an injury I got while playing softball. A chiropractor thought I had neurological damage in the nerve endings in my arm, and he felt it could be treated with therapy and vitamins. In 2012, I went to a neurologist in Denver, Colorado, who did an MRI and various muscle testing and concluded that I did not have Parkinson’s. But when we came back to Pennsylvania, it was obvious something was wrong, and progressing so I went to a neurologist in Scranton, and he diagnosed me within ten minutes after doing a few tests and just observing me. He told me that I’m not going to die from this disease, but it’s going to be a pain in the butt. I have embarked on doing everything I can to stay healthy and active, limber and positive.

My wife and I went to a Parkinson’s Retreat at Kirpalu in Massachusetts for people recently diagnosed with Parkinson’s and their care partners. This was a very uplifting experience for me because we got to meet over forty other people with the disease and share stories. The people who provided the programs talked about diet, exercise, meditation, and hope. One person said that he came to the retreat wondering how he was going to die and left deciding on how he was going to live.

In November 2014, we went to a conference sponsored by Michael J. Fox Foundation on current research that’s being done and got to meet Michael at the conference. I had an opportunity to go up and talk with him a little bit about golf. I said, “Michael, there are one million books written on how to play golf but not one on how to play golf with Parkinson’s. Would you consider writing a book on how to play golf with Parkinson’s?”   He said he would and added, “People ask me what my golf handicap is, and I just hold my arms up in the air shaking and say isn’t it obvious?”

I’m very positive about making the most out of my situation. I have an excellent exercise book written by David Sid, specifically designed for people with Parkinson’s. I play golf to keep limber and maintain my coordination. I eat a healthful diet and take what I think are appropriate supplements. My wife and I attend a support group on a monthly basis at Wayne Memorial Hospital and have made new friends with a few couples that live in the area. The sharing of how it’s affecting our lives is very helpful. I don’t look forward to the progression of his disease, but I will meet whatever comes with a positive attitude.

Marcia Guberman

April 29, 2015

July 15, 2013 changed my life. I was diagnosed, after four years of symptoms, with Parkinson’s Disease. This was a disease I knew nothing about. It is a degenerative neurological disease with no cure. I knew no one who had it. I was shocked. I was always prepared for heart disease, or cancer. Those were the things my family had, and so I lived my life trying to prevent them as best I could, but Parkinson’s?   Are you kidding me?

It took four years to diagnose because, as it turns out, to date, there are no definitive tests to determine Parkinson’s. My first symptoms, leg tremors, appeared only sporadically in 2009.   Two years later, I started dragging my left leg. After another year, the traditional hand tremor began and loss of balance occurred. After lots of doctors, MRI’s, physical therapy, and pain management, the final diagnosis was made in 2013 by a neurologist in conjunction with a Movement Disorder doctor.

I began to read everything I could get my hands on about PD. I reached out to the National Parkinson’s Foundation. They were a huge support for me. Their staff counselors, who work on the phone 24/7, were terrific in answering my questions. Their website and online support groups occupied me in the middle of the night when I couldn’t sleep. I was directed to a week long program in the Berkshires put on by the Foundation. My husband, Erwin, joined me, and together we learned about the disease. We met people with PD from all over the country and one couple from right here in Wayne County.

I wasn’t quiet about my PD. I let my friends and family know. They, in turn, would run into people who also had PD but had not really told anyone. Every so often, I would get a phone call asking if my name and phone number could be given out to someone. “Of course,” I’d say. I began speaking with other PD patients. Sometimes we would meet. They, too, had never met anyone with PD. We would speak about our journeys and share medical information. I would provide resources, both locally and nationally, that were of help to me in hopes that it would benefit them as well. Often, they hadn’t known where to turn so they just isolated themselves.

In November 2014, we were invited to attend a research roundtable presented by the Michael J. Fox Foundation in New York. We asked our new friends from Wayne County to join us. We listened to a panel of doctors, scientists, and administrators from both the United States and Canada talking about the latest developments in the field of research. We learned about the importance of participating in Clinical Trials. It is estimated that each trial only has one new participant each month. The bonus of the day, for me, was meeting Michael J. Fox. What an honor! As an Early Onset Parkinson’s patient, someone diagnosed at a very young age, he has been the driving force in finding a cure for this disease that effects over one million people in the United States, and in fifteen years is anticipated to have that number double.

Today, my husband and I participate in Clinical Trials through the Michael J. Fox Foundation. These trials are trying to find ways to diagnose, slow, or prevent the disease completely. The Foundation coordinates studies being done around the world to bring all the information together so scientists are coordinated and not working in a vacuum re-creating the wheel. Fox’s mission is to put themselves out of business. Right now, I am participating in one that will last for five years seeking biomarkers for diagnosis. All in all, I’ve probably participated in about twenty clinical trial thus far. This participation helps me feel like my Parkinson’s has a reason for existence and really educates me on what’s happening in the field.

As a community, we are holding a 5k fun run/walk and one mile community walk and Resource Fair on June 20 in Milford. Our hope is to make people with PD and their care partners aware of resources in this area to be of help. We would also like others with PD not to feel isolated and help remove some of the stigma people with PD feel. Our financial goal is to raise $10,000 to help with the fight. Check us out on our website at www.poconofoxtrot5k.org.

As for me, it has become a big part of who I am. I exercise and do yoga to try to maintain where I am, do specific therapy for my balance, and rest more than I ever thought I’d want to. While, to date, it has not stopped me from doing much of what I want to do, I do wonder about the future. I try not to go there. I try to stay in the moment and enjoy all life has to offer today.   After all, isn’t that all any of us have?

SAVE THE DATE

Pocono Fox Trot

June 20, 2015 – 8 AM

Ann Street Park, Milford

5k run/walk & a 1 mile community walk will be held to raise money for the Michael J. Fox Foundation for Parkinson’s research. www.poconofoxtrot5k.org.