“Life is not the mountain tops, it’s the walking in between.”[1]
Ben Rector
YOPD and DBS
In 2010, at the age of 46, I was diagnosed with Young Onset Parkinson’s Disease. Since that time, life has changed somewhat and presented challenges, as Parkinson’s is a progressive neurological condition. But I focus on living my life to the fullest in spite of the challenges this disease presents.
After dealing with moderate symptoms of the disease for five years, my tremors and, eventually, dyskinesia became severe. Performing everyday tasks became nearly impossible. Therefore, in 2016, I underwent successful Deep Brain Stimulation (DBS) surgery. Having this procedure was not an easy decision; nor was it one that I expected to face. However, it has changed my life for the better, as I’m now better able to care for myself and my family, and I have also been given the opportunity to travel. Of course, life is not without its challenges, too, as I continue to medicate throughout the day. But DBS has tremendously improved my quality of life.
Radio Parkies
Approximately five years ago, I joined Radio Parkies as a volunteer on-line DJ. Radio Parkies launched in September 2010. Jean-Paul De Cremer, who resides in Belgium, created the station, which is a broadcasting service with a mixture of live shows and non-stop recorded music. Now global in its reach, DJs host shows on three continents: Europe, North America and Australia. We believe Radio Parkies to be the one and only web-based radio station powered by people with Parkinson’s disease.
Being a DJ has become a creative outlet for me. I enjoy music, and via this platform I’ve been given the opportunity to reach out to others, including those with Parkinson’s disease, by sharing the daily struggles and success stories that this disease presents. My hope is that through the telling of my own and other’s stories about our journeys with Parkinson’s, while also sharing some of my favorite songs and artists, I will connect with listeners. I’m able to put all of my feelings into the music with the goal of reaching people.
Once, during a live broadcast, I received a message from a complete stranger. She stated that she had been having a difficult day but that the music lifted her spirits and she wanted to thank me. This response illustrates my purpose on Radio Parkies. In addition, my husband, Chris, has been an occasional co-host for several months, and we infuse humor into the broadcasts in an attempt to lighten the listeners’ emotional load. Featured on Thursday evenings at 7 pm Eastern Time, all broadcasts are recorded and archived on www.mixcloud.com. Please visit www.radioparkies.com. You can also listen live via the TuneIn Radio App.
Lessons Learned
I’ve learned much since my diagnosis with Parkinson’s disease. I’ve learned not to be afraid to disclose my physical symptoms, but rather to open up and share my experiences with others. I do this through social media, support groups, and on the radio. I have made many dear friends who live with Parkinson’s and we’ve attended numerous events together to raise awareness and funds for research. Examples include the Parkinson’s Unity Walk in New York City, and many fundraisers and galas all over the country to support The Michael J Fox Foundation for Parkinson’s Research. I’ve learned that my family and friends truly love me and care for me, especially my husband, Chris, my two sons, Matthew and David, and my parents. All of them, and others, continue to be by my side, every step of the way.
Of course, since being diagnosed with Parkinson’s some things have been taken away from me, such as ease of movement and a decline in cognitive and motor function. I also deal with speech issues, illegible handwriting, memory changes, and sleep disturbance. And yet, gifts have been given to me as well. The radio station is just one example.
It seems as if I have this disease for a reason, and I believe that I can educate and assist those with Parkinson’s disease. I am able to do so via Radio Parkies, and by openly and honestly sharing my experiences. In this way, those of us with Parkinson’s walk beside one another.
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[1] Ben Rector, “I Like You,” from the album The Walking In Between. Recordings, 2013.
Laura Hanf was diagnosed with Parkinson’s in 2010, at the age of 46. She had Deep Brain Stimulation surgery in 2016 to improve her quality of life. She’s committed to helping those with the disease by sharing her experiences and her listeners’ stories via RadioParkies.com, a radio station for people with Parkinson’s, where she is a DJ. She’s also a member of Team Fox, the fundraising arm of The Michael J Fox Foundation for Parkinson’s Research. Laura resides in New Jersey with her husband, Chris, and their two sons, Matthew and David. |
