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Jewish Journal

Every Day is a Beautiful Sunrise

by Lia Mandelbaum

March 25, 2013 | 7:15 am

I believe I have the most beautiful mother in the entire universe.  Granted I’m biased, but the truth is that she is nothing short of being a beautiful soul in every way possible. 

At this moment, I am sitting in a waiting room at Tampa General hospital while my mom is in surgery getting one of the batteries replaced to her brain pacemaker.  At the age of thirty-nine, she was diagnosed with Parkinson’s disease, which is a progressive neurological disorder.  The disease gained national attention when the former boxer Muhammad Ali and actor Michael J. Fox went public with their illness.  About eight years ago, her disease had progressed to the point where she qualified to receive Deep Brain Stimulation (DBS).  DBS is a surgical treatment used to reduce the symptoms of Parkinson’s disease, as well as other medical conditions such as major depression, chronic pain and various other movement disorders.   The DBS hardware sends electrical impulses to specific parts of the brain.

 

 

 

She had her first surgery in 2003 for the left side of her brain, and the second surgery a few years later when the disease had progressed to the right side.  The surgery lasts seven hours, and takes an entire team of doctors and nurses.  They used incredible technology to listen to her brain waves, and targeted the areas of the brain afflicted by the Parkinson’s.  I’ll never forget how during the second surgery, I received a phone call from her while on the operating table, and with her brain exposed.  She wanted to let me know that she was doing well and loves me, and to make sure that we have popsicles in the fridge for when she gets home (her favorite post-surgery treat).

The impact of DBS has been miraculous for my mom, and has given her a second chance at life.  I am beyond grateful for Medtronic, which is the company that produces various kinds of biotechnology, such as her DBS hardware.  When she turns the device off, it is within seconds that her symptoms come back full force, and she is completely debilitated by severe tremors.  When she turns it back on, it is incredible how she can just throw on her shoes and go running around the block.  She jokes about being a bionic woman.

My mom is a graceful advocate and role model for the Parkinson’s community.  Only two months following the first surgery, she ran in the 15K Gasparilla Distance Classic, which totals 9.3 miles.  With her hands held high, she exuded tremendous joy as she crossed the finish line of her unlikely victory.  One of her greatest passions had been competitive running, and her deep desire to run again was a major motivator to fight the disease.  Her other motivators were her family, and the ability to wear high heels again (self-proclaimed shoe addict).  A reporter heard about her story, and an article was written that made the front page (above the fold) of the Tampa Tribune.  People with Parkinson’s from all over Florida contacted my mom, thanking her for giving them hope.  My mom has taken lead roles in the production of major fundraising events for Parkinson’s research.  She managed to bring keynote speakers on board such as Rasheeda Ali-Walsh, who is one of Muhammad Ali’s daughters, the American political commentator and journalist Morton M. Kondracke, and the former Los Angeles Times editor and reporter Joel Havemann. Just last year, she walked down the isle to receive her Masters diploma in marketing from the University of South Florida College of Business. 

 

 

While my mom is a rock star and hero, I know that there are times when she is just trying to get through the day.  She constantly has to adjust to the various challenges of the progressive illness, such as loosing the strength to speak and swallow.

The other day she looked at me in awe and with a big smile, and said, “Do you know what a miracle it is that I’m standing here with you?”  My mom decides to look at the silver lining of her disease.  She believes that it has helped her to be a better person, and has provided wonderful experiences that she wouldn’t have had otherwise.  Over the years, I have witnessed how as my mom’s body cooperates less and less, her soul becomes more free and alive.  She has taught me how the body is ultimately a shell, and the soul is eternal. 

I have the most beautiful mother in the entire universe, who has touched and inspired all who know her.

 

Article from St. Pete Times covering my mom running in Gasparilla:

http://www.sptimes.com/2007/02/16/Citytimes/Outpacing_Parkinson_s.shtml

Article about her going back to school:

http://www.usforacle.com/walking-with-parkinson-s-1.2109032#.UVBqNaX3Ab0

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