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Posts Tagged ‘#Parkinsonsawareness’

Save Me A Dance

The last time I danced with my Dad was two years ago at my nephew Tyler’s bar mitzvah. I never say no to a dance with him, and I love to watch him on the dance floor with others. Not just because he is a good dancer but because the joy he exudes when he dances is contagious. Seriously, if I could bottle it up and sell it, I’d be a millionaire a few times over.

He hasn’t let his Parkinson’s diagnosis slow him down. Dancing is a wonderful form of exercise for people with Parkinson’s disease (PD). It helps strengthen muscles and reinforces balance. It also stimulates the mind and keeps depression at bay which is common among those with PD.

It’s also a lot of fun.

I’m hoping for many more dances with Dad, so I’m taking six minutes today to shine a light on PD. April is Parkinson’s Awareness Month, and someone is diagnosed with it every six minutes in the U.S. Parkinson’s disease is the second most common neurological disease after Alzheimer’s disease. More than 10 million people worldwide live with Parkinson’s—including my Dad. He was officially diagnosed in 2011 but probably lived with it for years before that. The cause is largely unknown, but research points to a combination of genetics and environmental causes, like pesticides. Coincidentally, there are at least four other people who worked in the same building as my Dad who has or had Parkinson’s, so environmental causes could very well be a factor in his case.

PD is a complex disease to diagnose because many of the symptoms are similar to what happens as we age—walking slowly and shuffling, losing balance, cognitive difficulties, limb stiffness, tremors, and so on. But PD affects dopamine-producing neurons in a specific section of the brain. Dopamine is associated with movement, attention, memory, and learning, and low levels cause various issues. People are typically diagnosed later in life, but early onset is also possible. There are treatments—medication, physical therapy, etc. but so far, no cure.

Research is crucial to finding a cure. I am currently enrolled in the Parkinson’s Progression Markers Initiative, a comprehensive research study funded by the Michael J. Fox Foundation for Parkinson’s Research. I’m also considering genetic testing to see if I have one of the three genes that indicate a higher risk factor for Parkinson’s. It turns out that I have family members on both sides who have been diagnosed with PD, but having the gene doesn’t mean I will ever develop the disease.

Getting off of my soapbox and back to my Dad. He is doing well. He has a terrific support system of friends and family and loves to keep in touch with everyone. And while I see changes in him as the years go by, I know there is still a lot of dancing left for us to do.

If you have a loved one, who has been diagnosed with PD or just want to learn more about this progressive neurological disease, check out the #Take6forPD campaign.

A First Time for Everything

They say that you never forget your first kiss, first trip to Disney World, first car, and many other firsts.

How about the first time you lost someone close to you in your family? Do you remember? I certainly do.

My Grandmom Elsie passed away on December 15, 1987, which happened to be the first night of Hanukkah. Even though her birthday is in April, I remember her the most this time of year. I was almost seventeen when she died. I can still picture my mom standing at my bedroom door, waving her arms above her head, trying to get my attention. I was sitting on the floor drying my hair before school and saw her in my full-length mirror. When she told me the news, I remember a wave of sadness rushing over me, and I promised myself that I would never forget her.

I wish I could say that I had deep conversations with Grandmom Elsie throughout my childhood. I was eleven years old when she was diagnosed with Parkinson’s Disease (PD). I had never heard of PD before and didn’t know much about it except that it robbed me of the opportunity to get to know her better. Of course, it robbed her of much more.

But, what I do remember, I treasure. Like how Grandmom taught me to play gin rummy at her dining room table. And how she always had Pepperidge Farms Milano cookies in the kitchen pantry and Andes chocolate mint candies in the candy dish. She took me to the pool at her apartment complex, where she loved to swim and hang out with her friends. While I didn’t learn to swim, the ice cream sandwiches were divine.

Speaking of firsts, the first time I went on an airplane was to visit Grandmom Elsie and Grandpop Irv in West Palm Beach, Florida, where all the Jewish grandparents flocked to for the winter. She was so happy to see my cousins and me. She helped me with my math homework and may have introduced me to competitive shuffleboard. After visiting with them for a few days, my aunt and uncle took us to the Magic Kingdom in Disney World, which was also a first for me.

Last week, I asked my mom to tell me more about her mother. It turns out that my grandmother and I have a lot in common. She was an avid reader and coffee drinker. She didn’t like to cook. She worked outside of the home, which was rare in the 1950s. She enjoyed being around young people and had many friends in the neighborhood.

My mom told me how brave she was after being diagnosed with PD. She always said that she had a good life and was brave in the face of the unknown. Parkinson’s Disease is not a death sentence, but it is life-changing. It is a progressive neurological disorder, and there is no cure – yet.

Did my grandmother belong to a neighborhood book club? Who were her favorite authors? Was she a fan of romance novels or family dramas? Did she experience the same working mom guilt that I did when my kids were younger? When she had to cook, did she have a go-to meal that she made all the time?

Over the past few years, I’ve learned a lot about PD and writing a book about how it has impacted my family – another first). But, for the moment, I want to give the science a rest and let the stories behind the diagnosis. I’d love to sit in her lap and talk to her (like in this photo – Grandmom and I are on the right and my sister and Aunt Martha on the left). But unfortunately, life doesn’t work that way.

For those who wish to share these stories and their own stories, I’m here for it. Let’s talk!

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Raising PD Awareness for a Cure

April is Parkinson’s Disease Awareness Month. It’s difficult to shed a light on a disease that resembles all the typical signs of aging like walking slow, having tremors or falling. But, Parkinson’s Disease, or PD, is so much more. It is a progressive neurological disease that has no cure. It’s a movement disorder that occurs when the brain cells that make dopamine – a chemical that controls movement – stops working. In addition to movement, people with Parkinson’s can also experience other physical and psychological issues.

More than 50,000 people are diagnosed with PD every year ane each person’s experience is unique. Some people experience minor symptoms that can remain that way for a long time, while others deal with more advanced problems. There are medications to ease the symptoms and improve quality, but again it’s not a cure.

How do I know so much about this? I have two special people in my life diagnosed with PD. I often think of my grandmom, Elsie, who swam every day at the pool in West Palm Beach, played pinochle and gin rummy with my grandfather and doted on her grandchildren while enjoying her coffee and Pepperidge Farm Milano cookies. After her diagnosis, it was jarring to watch this once vibrant woman slowly and strategically maneuver her walker around her living room. Over the years, her voice became much softer, she had stiffness in her limbs, and her ability to attend family celebrations was challenging to say the least. She fought PD for a long time and experienced other complications which led to her passing.

Today, I watch my dad fight PD. For as long as I can remember, my dad has always been on the move and never one to sit still for long. As a middle school teacher, he used to sprint up and down the stairs as fast as his students—faster if he was running late. He bowled frequently, rode his bicycle and enjoyed the outdoors. At parties, he and my mom could typically be found on the dance floor. To this day, they can still cut a rug which is a joy to watch and is, coincidentally, a highly recommended form of exercise for PD patients.

His PD symptoms are completely different from my grandmother. His PD presents itself as tremors in his hands, shuffling his feet as he walks and sometimes losing balance and falling—which has happened on one too many occasions. In public places, he uses a cane as a safety net, but he doesn’t let it stop him from living life to the fullest. Recently, he and my mom went on the trip of a lifetime to Israel. They have a national parks tour scheduled for later this year.

I’ve come to recognize PD in celebrities before they announce their diagnosis to the public. I once heard former Philadelphia mayor, Ed Rendell, speak at our synagogue, and I knew what he was facing by the way he walked to the podium and his mannerisms. I hate being right about these things.

As the daughter and granddaughter of two people affected by this disease, I am doing my due diligence so that everyone can continue to make their dreams come true despite their illness. I donate to the Michael J. Fox Foundation regularly. I’m considering joining a research study since I am part of a high-risk group that may or may not develop it in my lifetime. But I am still thinking about it. I honestly don’t know how I would react to the results. But that’s a story for another day.

In the meantime, I’ll continue to raise awareness and funds to support those who are diagnosed early in life like Michael J. Fox at the age of 29, and my dad who inspires me in so many ways.

If you would like to help fund important research to find a cure or support organizations that offer exercise programs and support to PD patients and their caregivers, consider donating to the Michael J. Fox Foundation or your local PD charity. In the Philadelphia area, I recommend the Parkinson Council.