“I am new to this.” ~Steve Holker, Person with PD
Steve was diagnosed with Parkinson’s (PD) 2 years ago at the age of 62. He has a noticeable tremor in his right hand and arm.
“As others say, I probably had PD for a year or two prior to my diagnosis. I did go to my regular doctor in the spring of 2012 to see what was going on. But he blew me off. He didn’t address the tremors I was having,” said Steve. “By the late summer and early fall my tremors were getting worse, so I went to a neurologist.”
He diagnosed my PD, and told me to come back in 2 months. He just dismissed me – pushed me out the door without any information. All I could think of was Michael J. Fox and Mohammed Ali. I was angry.
I come home to an empty house. I was in shock. What is this PD? What does it mean? I told my wife when she came home and we told the kids later that day. I told my siblings two days late but I didn’t tell my mother. She had just seen my father pass away from Alzheimer’s and she didn’t need anything more to worry about. But two months later when we went to see her doctor, she saw my tremors and knew something was going on. I told her I had PD, we cried, and she said ‘We will get through this.’ She is stronger than I gave her credit for.
“When PD is new, it’s hard. You look for information about what PD is and what it means. You have to think about who you tell and when. You have to figure out how and when to tell your employer so that you don’t risk losing benefits and your pension.”
Thankfully I had two good friends, one in Human Resources and the other a lawyer, which walked me through the process.
“My company was great. I was in sales and traveled a lot in the upper Midwest. It was becoming tough to do my job – I was exhausted all the time. At a crucial meeting with one of my largest customers, I was shaking like a leaf and I couldn’t keep my train of thought. I didn’t know how much of it was stress and how much of it was the PD but it wasn’t good.”
I decided to tell my company I had PD six months after I was diagnosed and I continued to work for another six months. Then in July of 2012 I was put on short-term disability that was done in March of 2013. Before I left, my company threw me a big party and flew 20 people in to Minneapolis to help celebrate. They also made sure I received all the benefits that I had earned.
I am now on long term disability and I am applying for Social Security (SS). Like many others, my application was rejected the first time. I had taken a neurophysical test and had done well. I just had no abstract ability and moved slowly. I guess as long as you can be a store greeter, you are considered employable. I am appealing the SS decision.
I am new to all of this, but I have assembled a great team around me to help. My wife and I went and interviewed several neurologists until I found one that we connected with. We found one we liked – one who laid everything out for me without me having to ask. It also helps that the doctor and I have the same sense of humor. And of course my wife, my friend in HR and the lawyer are on my team. My wife is a tough lady who is with me all the way on this. (She even makes me do my physical therapy exercises whether I want to or not.)
I am scared from time to time about my PD and what it will bring. But for the most part, I am doing very well and I am very busy. I cycle with my neighbor and putz around in my yard. I do yoga and work out four to five times a week. I miss running, but that probably has more to do with my back than my PD so now I walk a lot. I have a lot of friends we socialize with. I even have friends from high school with me.
PD is part of my life, but not all of it. PD changed our future plans in several ways. We were about to buy a place in Phoenix for the winters but we did not go through with it at the last minute. Something told my wife it wasn’t the right thing to do – and she was right. I don’t know where the future is going to take me, but I am sorting it out piece by piece.
“My advice to anyone who has recently been diagnosed with PD is to assemble a team that can help and support you as things evolve. Continue to do the things you like, such as being with friends and going to ball games. Stay positive and have a sense of humor. Things will fall into place as you go.”
If you want to see Parkinson’s in a new light you only need to drive by Mike Justak’s home in Plymouth, Minnesota. He shines not one light, but more than 50,000 of them. For the holidays his home turns into what he’s dubbed “PD Shimmers,” a Christmas light show synchronized to music, in order to raise awareness of Parkinson’s disease (PD).
Wife, mother, activist, author, and artist who also happens to be living with Parkinson's Disease.
Philanthropists, neurologist and PwP