My Parkinson's Diagnosis at 36 Changed My Kids' Lives for the Better

Beth HochsteinWhen Beth Hochstein was 36, she had a busy podiatry practice and two young children at home. Then one day, her finger locked up in the operating room, right in the middle of surgery. Soon the tremors started in her right hand, and they weren't going away. Within weeks, Hochstein had no choice but to go to the doctor. What she learned was the last thing she was expecting:  Parkinson's disease.

"People think it's an old person's disease," the mother of two from Long Island, told The Stir. But it's not. You can be a mom running kids from dance class to school play practice, from music lessons to Hebrew school, and suffer from a disease that's slowly taking away your control of your own body.

Hochstein has what's called young onset Parkinson's disease. It's the same form of the neurodegenerative brain disorder that actor Michael J. Fox has, and it affects some 1 million Americans. Of those, only about 10 percent are diagnosed before age 50. They're people like Hochstein -- young folks who never gave a thought to Parkinson's.

In fact, Hochstein's initial fear after suffering that first finger lock-up was that she had a brain tumor. After all, that's what killed her grandmother.

Fortunately, Parkinson's does not kill folks.

Unfortunately, there is no cure.

Hochstein will live with Parkinson's, and its degenerative effects on her body, for the rest of her life.

It hasn't been easy. When she was first diagnosed, in 2007, she continued to work. But in 2010, when she had to increase the medicines she was taking to control the Parkinson's, the working mom realized she had to step away from the practice she shared with her husband. Now her entire right side is affected by the out-of-control muscles.

There are many days when she wakes to find her ankle is locked, and she struggles to walk her daughter Sarah, now 9, down the street to catch the school bus. Hochstein now has help on mornings when her husband can't be home. Without medication, she finds it difficult to even climb stairs. Her medicine causes the jerky movements called dyskinesia (Fox suffers from those too) and she needs far more of it than she did even three or four years ago.

But a life-changing diagnosis is not a life-destroying diagnosis. Hochstein acknowledges that Parkinson's has made life more challenging, but she also credits  the disease with what it's pushed her to do.

Since her diagnosis, she has slowly, but surely, become an active participant in the Parkinson's cause. A dancer as a child, she turned to Dance for PD, dance classes specifically made to help those with Parkinson's after her doctor told her exercise would help her condition. She took courses to become an instructor, then found Zumba, and became an instructor for that as well.

Today she teaches both forms of dance, and she's used both to fundraise for the Michael J. Fox Foundation. Her next project -- Dance Party for Parkinson's -- will be held on April 5 in New York City, with Zumba instructors from around the country joinging in to help her teach people to dance for the cause.

Living with a mom who is constantly raising money for research has, in turn, created kids who are intent on doing the same. On Halloween, Hochstein's 12-year-old son Max could have spent the night gorging himself on candy. Instead, he set up a booth in front of the family's home and offered to paint monster scars -- a skill he picked up at camp -- on neighborhood kids. By the end of the night, he'd raked in $500 for the Michael J. Fox Foundation.

The Hochstein kids are constantly coming up with funny ideas for charity, their mom says, and Max, a hip hop dancer, will even be dancing at the Dance Party next month.

"It does give them a sense of not being into yourself and wanting to help other people," Hochstein said of the way Parkinson's has affected her family. "It gives them a sense of charity.

"I think it's good for them to be able to raise money to help other people," she said. What's more, having a mom with Parkinson's is something the Hochstein kids simply take in stride, their mom explained.

If anything, being diagnosed when Sarah was just 3, Max just 6, helped make this the norm for her kids. When the Hochsteins finally sat the kids down to explain why she would be quitting her job as a podiatrist, it didn't even faze them.

"I think they don't see it as a disability," Hochstein explained. "They live it; to them it's their mother."

****

To find out more about living and parenting with Parkinson's, visit the Michael J. Fox Foundation.

Do you live with a chronic disease? How does it affect your kids?

 

Image via Beth Hochstein

family, general health

1 Comment

To add a comment, please log in with

Use Your CafeMom Profile

Join CafeMom or Log in to your CafeMom account. CafeMom members can keep track of their comments.

Join CafeMom or Log in to your CafeMom account. CafeMom members can keep track of their comments.

Comment As a Guest

Guest comments are moderated and will not appear immediately.

nonmember avatar Robyn M Levy

At 43, I was diagnosed with early onset Parkinson's. Your children are fortunate to see you engaged in life, facing the challenges PD causes. I applaud all the Fundraising you and your family do.



My daughter's experience of having a mom with PD was complicated. We made this animated video about her perspective --

http://m.youtube.com/watch?v=A-GyPjxx9j4



I also wrote a memoir about being diagnosed with Parkinson's & breast cancer in the same year. It's called Most Of Me: Surviving My Medical Meltdown.



Wishing you and your family lots of love & support,

Robyn Michele Levy

robynlevy.ca

1-1 of 1 comments