Few of us are amputees, but between climate change, COVID and our poisoned political environment, many are having difficulty maintaining the optimism they once had. What advice or tips do you for helping people staying focused on the positive, or on maintaining a hopeful outlook in these difficult times?
First of all, I’d spend less time watching the news and reading the papers. It’s important to be informed and stay up to date on current events but after a quick read or listen once a day, I suggest turning your attention and energy to helping people and fixing things around you. Get outdoors every day, even if it’s just sitting in the driveway or on the sidewalk. It usually improves your attitude. Dream. Write those dreams down and create plans to achieve them in a reasonable time frame. When possible, surround yourself with things that make you happy and upbeat.
Your book focuses on your recovery as an amputee rather than your Parkinson’s diagnosis, which came much later. What lessons did you learn from that first experience that you were able to able to apply to Parkinson’s?
It’s hard to know where to start with this question because everything I learned from living as an amputee can be applied to living with PD. Perhaps over-arching is the choice every day to choose to be happy rather than sad or angry. Don’t waste your energy looking for someone or something to blame. Move on and use your energy for figuring out new ways to do the things that are difficult to do. Don’t dwell on what you can’t do. Instead, find new things to take their place. Make a game out of inventing new ways to do things you need or want to do. And finally, learn to ask for help. Don’t turn people away when they ask if they can help. Give them the chance to feel good by helping you. My husband calls this being “graciously dependent.”
Many with Parkinson’s speak of the unexpected gifts that the disease has offered them. Has being a triple amputee brought any unexpected gifts into your life?
I’d be the first to admit that being a triple amputee has made my life much more interesting. People are unavoidably curious about my visible disability, and I’m not shy about stopping and explaining what it is. It’s taught me to be a good communicator. Having to learn new ways to do almost everything forced me to set goals and be patient. But perhaps the biggest gift for me and my husband was gratitude every day for just being alive and loving each other unconditionally.
Many with Parkinson’s seem to go through a multi-year period of denial and/or depression. For you, it seems that you did not have that luxury. You seem to have been clear-eyed about your situation and never really lost hope. Where did this resiliency come from?
First of all becoming an amputee is vastly different from being told you have PD. Traumatic amputations happen in the blink of an eye…you look at the place your arm or leg used to be and there is nothing there. Losing three extremities made me abjectly dependent and I hated that. I didn’t know if it could be done, but I desperately wanted to be independent. I wanted to live on my own again while finishing my radiology residency. Having that goal way out ahead of me gave me the impetus to do everything within my power to get there. The unwavering physical and emotional support of my husband, my family and friends carried me through the hard times.
While lying in bed the first days after the accident, I realized that the only thing I had immediate control over was my attitude. Once I figured out that anger and sadness took a lot of energy, I made a conscious decision every morning to be happy and to try and make everyone around me happy too.
For many, Parkinson’s first manifests itself as a tremor in the extremities. As an amputee, how did you first experience your Parkinson’s? Did your status as an amputee complicate your diagnosis?
It’s a good thing I saw a movement disorder specialist early on because she knew there is more to PD than having a tremor. Since three of my four extremities are gone and I have only 5 digits instead of 20, it might have taken a long time to make the correct diagnosis. Luckily, I still don’t have a tremor. My kids think that if I develop a tremor in my left hand, it will give me an excuse to get a prosthesis to replace my missing right arm…presumably it won’t be able to shake…haha. Foot shuffling probably doesn’t show easily when using prosthetic legs and clearly not at all when I’m sitting in my wheelchair without my fake legs.
Like most PD patients, my first symptoms were vague and not readily recognized. Retrospectively, micrographia and bradykinesia when using my hand were the first identifiable symptoms. But what hit all of us in the face was anxiety which manifested at Christmas 2014 when I started yelling at my grown children and their partners while they were merrily fixing Christmas dinner. I was hyperventilating and freaking out that they weren’t going to be done in time to feed the 30 people coming for dinner. A few years ago I stopped walking with a cane and starting using a wheelchair full-time, assuming that I was just getting old and worn out. It took a while to realize that my truncal stiffness and loss of balance were actually from PD and not age.
But…here’s one of those silver linings…because I’m an amputee and am in a wheelchair, I’m not falling and hurting myself. And at night when I need to go to the bathroom, I just butt-walk into my wheelchair and buzz into the bathroom and back into bed. I’ve actually been told by many people that I don’t have PD because I don’t show any symptoms. Little do they know.
The book “Gone: A memoir of Love, Body and Taking Back My Life”, is available for purchase here.