CHAMPs > Parkinson's CHAMP

April 2012 - Team Susan - A Tribute to Our Mom


In August 2003, as Gaby was preparing for the birth of her second daughter, our mother, Susan Budman, was preparing to break some devastating news: she had been diagnosed with Parkinson’s disease. After feeling numbness in her right arm, she and our father visited a neurologist in Boston who informed her that she displayed the tell-tale signs of this devastating, progressive disease.
 
Our mom has always been an extraordinary woman. When we were growing up, we never had take-out. Mom wouldn’t stand for this! Each night, while juggling carpools and homework, she prepared a delicious meal for the family. On the Jewish holidays, she refused to let anyone bring anything. She started her regimen weeks before, cooking and freezing food to serve 25 guests. Mom is also incredibly bright. Every week she completed the NY Times Crossword Puzzle, rejecting anyone who wanted to help or give her clues. Always an incredible history buff, she helped us with our homework and tested us until she thought we were ready for our exams. Growing up, she never missed a gymnastic meet (Gaby), school show (Shari) and loved to take us shopping for our wardrobes. On top of everything else, she helped my dad, a psychologist and social science researcher, found Inflexxion.  Their company now has over 100 people and studies a variety of healthcare related topics.  Because of her PD, Mom has had to retire from her role as Chief Operating Officer.
 
Mom is still this amazing woman/mother/grandmother, but Parkinson’s has taken a great toll on her life. For years she struggled with gait and balance and suffered some pretty bad falls. Her life consisted of taking medications, visiting doctors and coping with her pain and new way of life. Her five grandchildren adore her and are so excited by her visits, but my mom is saddened that she is unable to be as active with them as she had once imagined.

Our father, Simon, has made it his life’s mission to find out everything there is to know about this degenerative disease. He is constantly researching the newest breakthroughs in medicines and surgery and finding the top specialists. Through his explorations, he discovered a world-renowned brain surgeon in Toronto, Dr. Andres Lozano, who was doing a unique form of DBS focused on Parkinson’s patients who suffer from issues with gait and balance. Our father and Dr. Lazzano were in touch for more than a year, when finally the opportunity arose for her to undergo this novel form of DBS.
 
Last January, the family went out to Toronto to support my mom in one of the scariest experiences of her life. With all of the fear, also came a renewed sense of hope for the future. As we had expected, the surgery went well but the recovery was incredibly difficult. Our mom had experienced memory loss from the brain trauma and was also in a fair amount of pain. Over the past year, the programming sessions have gotten her to a place of significant improvement. As opposed to falling 10-15 times a day, she rarely falls once in the course of a week; whereas a year ago she could barely walk, she is now usually able to get around herself.  She had gotten back to a regular exercise program and is able to socialize with friends.
 
Gaby and I would also like to add a “shout out” to Mom’s wonderful movement disorder specialist, Dr. Ludy Shih, at the Beth Israel Movement Disorder Clinic in Boston.  Without Dr. Shih’s compassionate support and ready availability Mom’s remarkable improvement would have been much more difficult.
 
After seeing what our mother has gotten out of this experimental DBS, we are more determined than ever to raise money for Parkinson’s research. We have been so lucky to have amazing family and friends who generously support us in our endeavor and this year we hope to reach our goal of $10,000!

We have taken part in the Unity Walk for the past four years. Each year, more and more of our friends come out to walk with us and support the cause! It means so much that our friends care enough to take a day to honor our mom, Susan and all the people that suffer from the disease. Gaby’s daughters, 10, 8 and 7, have begun to walk and love the feeling that they are doing something for their Grammy. Every dollar raised and every step walked is another pace toward the cure that our remarkable mom deserves. We love you Mom!

Shari Matusow and Gaby Fisher