Finding Strength in Every Step

Mindy worked as an attorney for 26 years, including for the New York City Law Department, where she became the Chief of Workers’ Compensation. Now, she prioritizes spending time with her 16 grandchildren and exercising to manage her Parkinson’s disease, a progressive neurological disorder that slows movement and affects daily functions due to reduced dopamine production in the brain.

BTL: What was your reaction when first diagnosed with Parkinson’s?

M: I was diagnosed eight years ago. At first, I felt embarrassed and was in denial. For a very long time, the only person I told was my husband. I didn’t want to say it out loud because I felt like speaking it would make it real. I really did not want to acknowledge that I had Parkinson’s.

BTL: Would you say that your mindset has shifted since being diagnosed?

M: Definitely. In the beginning, I was very hesitant to tell anyone—I did not tell my children—but now I share it all the time and will tell anyone who is willing to listen. For example, if I’m moving slowly or taking longer to do something, I’ll explain that I have Parkinson’s and apologize. I’m no longer trying to hide it in the way I once did.

BTL: It’s really incredible how much more comfortable you have gotten sharing. How has Parkinson’s affected your daily life and your work?

M: When I was first diagnosed, it did not affect my work at all. However, other parts of my daily life have become more difficult. I used to love cooking and entertaining, but I don’t enjoy cooking as much anymore because standing for long periods hurts my back. Every summer, I hosted a large barbecue and deck party for all the attorneys I worked with. I loved bringing people together. 

My life also changed dramatically when my husband and I moved from Brooklyn to the New Jersey suburbs during COVID. I stopped working shortly afterward, so that was a major shift in my identity. 

However, moving also gave us a much larger background where we built a pool and that has become a magnet for our grandchildren, which is very meaningful to me.

BTL: That’s wonderful; spending time with family is always the most important thing! What does accessibility look like to you? What measures do you take now to support yourself?

M: Exercise is one of the only things shown to help slow the progression of Parkinson’s, so even though I was never athletic, I now exercise for one to two hours every day. I feel very fortunate because when we moved to New Jersey to be near two of our children, I discovered a fantastic Parkinson’s program in Cherry Hill. It gives me access to a wide variety of exercise classes and an excellent gym. It has also given me a strong support system. I’m surrounded by people who face challenges similar to mine and understand what it is like to live with Parkinson’s. That sense of community has been incredibly helpful.

BTL: Being surrounded by a community must feel so comfortable. Are they any adaptive activities that you or others participate in?

M: In addition to exercising, I take art and drawing classes. Once a month, I attend an art program at a museum in Philadelphia specifically for people with Parkinson’s. I also take local classes with an artist, attend a mindful meditation class, and enjoy reading. These activities allow me to be creative, engaged, and connected to others which I truly love.

BTL: That’s amazing! Given your religious beliefs and practices, how do you feel that your diagnosis has affected daily life as a Jewish woman?

M: I am an Orthodox Jewish woman, and Parkinson’s has not changed my level of religious observance. I was observant before my diagnosis, and I remain observant now. I still believe that everything is part of a bigger picture and that everything is ultimately for the good. This is the journey I have to take, and if this is the most challenging part of my journey, then so be it. I often think about the back of a piece of embroidery. When you look at the wrong side, you see threads and knots everywhere, and none of it makes sense. But when you turn it over, you see something beautiful. Right now, we may only be looking at the knots and tangled threads rather than the other side. It can be hard to remember, but I try to trust that it is all part of a beautiful picture.

BTL: Is there anything else you’d like to share about how your life has been shaped by Parkinson’s or what you want others to understand about living with it?

M: On one hand, I sometimes minimize it, but it has changed how I feel about myself. It is a struggle, and the most difficult part of this particular disease is knowing that it is progressive. I don’t know what I will be like in five or ten years. My mother is still alive, and sometimes she’ll make a comment about someone dying who “wasn’t even that old.” I tell her, “Mom, we are all going to die, and none of us knows when or how.” You have to keep going because that is all you can do. My biggest symptom is a tremor that sometimes affects my left hand. Of course, I wish that were not the case, but I feel lucky for how I am doing today. I’m grateful to live at a time when medication can help manage my symptoms and when so much research is being conducted. I hope that one day there will be a medication that can slow the disease’s progression. I also recognize that many people have much more severe symptoms and diagnoses than I do. People have said that you don’t die from Parkinson’s—you grow old with it. It is not considered a fatal disease, and I have to be grateful for that.