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Memories of Margaret

Margaret’s Obituary


Margaret Tuchman, our beloved co-Founder/President and beacon in the Parkinson’s community, died peacefully on Sunday, December 16, 2018.

“Margaret leaves an extraordinary legacy of advocacy on behalf of her fellow patients. She gave endlessly of herself to usher countless individuals into Parkinson’s activism and engagement. I was one of them, and I will forever be grateful.”
— Michael J. Fox

I feel blessed to have known Margaret and call her a friend. She was a giving and courageous woman who defied her disease. As her physical movements became slower, her advocacy to help others was done with speed. As the volume of her speaking voice lowered, her voice to speak up for the advancement of Parkinson’s research increased. I will always admire this great woman who lived a life of service to others.
May May Ali, eldest child of Muhammad Ali

Margaret Tuchman left this world a better place.  She took her diagnosis at such a young age and turned it into an incredible fight that has helped so many others. She truly lived a meaningful life with loving and lasting impact.  Margaret and my dear grandmother shared the same name, so in addition to rooting for her always, when I read or heard her name, I would always remember that and smile.
— Michelle Charlesworth, reporter for both ABC News and WABC-TV, and  weekend morning anchor for WABC-TV’s Eyewitness New

When I heard from Carol Walton that Margaret had reached the end of her fight, my heart resonated with sorrow at Carol’s words, acknowledging that even the most determined person will reach the end of her fight.  Yet, a part of me could not believe, or imagine, that our world, our Parkinson universe, would now be without Margaret. But I now know that Margaret will continue to walk with us, and with the thousands of people who will affirm at the Unity Walk, year after year, the same fierce strength and dignity, and the determination to make it better for the next generation. I was fortunate to have met Margaret, and to have witnessed for so many years her beautifully stubborn life affirmation. Thank you Margaret.
— Alessandro Di Rocco, MD
Professor of Neurology, Zucker School of Medicine at Hofstra Northwell
System Director, Parkinson’s and Movement Disorders, Northwell Health

I’ve known Margaret for over two decades—as a trainee through a full Professor of Neurosurgery—She has always been an inspiration through her own personal courage in the face of Parkinson’ disease. More impressively, she proved how one person’s unwavering dedication can leave a legacy of healing for others.
— Brian Harris Kopell, MD, Director, Center for Neuromodulation, Mount Sinai Health System, NYC

I have known Margaret for over 15 years, and Margaret had an unwavering determination to give a voice to individuals with PD. Although she had many vehicles for assisting the PD community, one of her many legacies is her patient-centered research, using surveys to obtain patient-reported outcomes. She addressed the very matters that were most relevant to PWP, and she had the credibility to give a voice to others. She was a woman with great knowledge and a psychological altitude that gave and still gives wings to the spirit. Her words and ideas soared, casting inspiration in far reaching ways, to others with Parkinson’s, their families, and professionals in the PD community.
— Jeffrey Wertheimer, Ph.D., ABPP-CN, Chief Research Consultant and Chief of Neuropsychology
Services at Cedars-Sinai Medical Center, Los Angeles, California

Twenty-five years ago I met Margaret Tuchman in a Prodigy Chatroom, one of the only support groups I could find for discussing Parkinsons Disease. Married with three kids and newly diagnosed, I was fighting an unknown enemy and felt very alone. Margaret offered more than support. She offered wisdom and a deep understanding of my battle. Together we spent countless hours discussing our dreams and our philosophy of life.

During one of these discussions, Margaret asked a straightforward question, If you could do anything you wanted with the rest of your life, what would it be?After many hours of soul-searching, the answer was the key to a new world.

Id work with horses,I answered. The abused and neglected, the throw-away horses that end up either slaughtered or left to die in some hidden, grassless pasture.We had talked about our mutual passion for horses before. It wasnt something new, but her next words changed my life.

Then stop dreaming and start doing.

Margaret laid down the challenge and together we walked through the first steps – forming a nonprofit, incorporating, taking all the steps needed to create Habitat for Horses. Magically, it all started coming together. Someone donated land, volunteers appeared, law enforcement officers asked for help, donations came from places far and wide, and suddenly a miracle happened – a very skinny, sick horse transformed into a strong, healthy, magnificent creature, and someone asked to adopt him.

Every step of the way, Margaret was there – pushing, counseling, urging me on. Several times Margaret made the trip to visit, to see the reality of our sanctuary. Those visits, however rare, were blessings. They brought us closer together, to see that our dreams were real.

She once stood in the middle of our round pen and laid her hands on Conan, a gentle giant Shire. Her tears of joy at that moment are forever burned into my memory.

When Margaret could no longer make the trip, when talking on the phone became too hard, I flew up to visit with her. The trips were far too rare. I kept them brief, for I could tell how easily she tired. On my last trip, I read to her from a book I had written about the majestic power of horses. She listened to every word, and when it was over, we both cried.

Over the 20 years, Habitat for Horses worked on cases involving over 7,000 horses and donkeys. Weve completed seizures with law enforcement from Florida to Montana. We now have a staff of twenty overlooking our 400-acre ranch.

Without Margaret Tuchman, it wouldnt have happened. Habitat for Horses was our mutual dream. She was the force that inspired me to achieve something far beyond the mediocre and mundane, to not accept anything less than the best of what is within me.

Margaret is very much a part of every animal we touch, every step we take. She is the core of Habitat for Horses. She will forever remain a driving force, urging us to, Stop dreaming. Start doing.
— Jerry Finch, President, Habitat for Horses, Alvin, Texas

In  my book, “Silence of the Bunnies,” I thanked Margaret Tuchman, whose “courage and grace battling Parkinson’s disease made me realize how light a burden illness can become when you spend your time, as she does, helping others rather than worrying about yourself.”  This wonderful lady, this dear heart, died about a month ago, making the world a slightly less wonderful place in which to live.

I had known Margaret since 2005, when Carol Walton had tracked me down and extended an invitation to visit Margaret, who had liked something i had written that had appeared in the Washington Post.  From that time until her death I was a regular visitor, for the simple reason that sitting in her company made me feel good. She had a way of drawing me out, and giving me advice that has not been equaled by anyone else in my 66 years.  When her health deteriorated to the point that it was difficult for her to communicate, we would solicit help from her wonderful circle of friends, whose powers to translate never ceased to amaze me. Or sometimes, we would each sit in one of the two recliners she had side by side, and just hold hands.

She was my dear, dear friend, and it saddens me that she didn’t live long enough to see a cure for Parkinson’s disease.
— Daniel Stark, Esq.

I am so sorry to hear of Margaret’s passing. I know she is watching over us now!

She was an incredible force and that glimmer in her eye will forever be with me.  I saw it emerge when we shared ideas together about our novel assistive technology projects in the setting of PD!

When Carol called me earlier today, I was listening to Max Richter’s Spring One – Vivaldi Recomposed (please listen to this).
It will remind me of Margaret’s spirit and determination. I will think of Margaret whenever I hear this song and I am confident that that the assistive technology that we discussed, which the world has not seen, will come to fruition. And that glimmer will shine on. I have no doubt.
— John-Ross Rizzo, M.D., M.S.C.I.

I wish to extend my heartfelt condolences to you, to the care team, and to Marty. I appreciated her courage and resolve, an inspiration and great lesson for me and to all who had witnessed her challenges. She touched my life and left an enduring legacy.
—Dr. Rogelio M. Pine

Dear Marty,
I am so sorry to hear about the passing away of your beloved Marge. Please accept Bettina’s and my heartfelt condolences.

I still remember Marge when I first came to your house in Princeton, must have been 35 years ago. Beautiful and full of life she made me feel very welcome in your life. I remember one time when I was staying with you I turned off the heat in the basement which made everyone freeze. Marge would laugh about it.

The two of you made for a beautiful couple living a wonderful life. Marge already had Parkinson at that time but you wouldn’t know. Smiling, never complaining.

I am sure the last few years have been a struggle, when you knew the fight could not be won. You tried everything Marty, raising funds for Parkinson. Using your talent and resources to find a cure. Marge fought this terrible disease bravely.

We will all miss her beauty, her spirit, her being.
— Raoul and Bettina

Marge and I have been friends for over 45 years.  She was working as assistant director of the Mercer County Community Action Council at that time when she hired me as a head teacher in a program for out of school youth.  Over the years, we became fast friends.  There was nothing we couldn’t talk about and we laughed a lot about so many things. 

When Marge was diagnosed with Parkinson’s at an early age, around 40, she never gave up her life spirit or essence and always continued with her many interests in helping others, loving and rescuing dogs, horses and other animals and enjoying nature.  I have no doubt, that with the help of her devoted husband, Marty, and Carol Walton of the Parkinson’s Alliance, she has left a legacy for other Parkinson’s victims to take good care of themselves and continue the fight against this debilitating disease.

In Judaism, there’s an expression called “Tikkun Olam,” which means making the world a better place.  My friend Marge lived to make the world a better place.  Although no longer physically with us, her dedication and efforts to make the world a better place will live on.

RIP, my friend.  You’ll always be in my heart and I am so fortunate to have had you in my life.
—Sydelle Norris

For some 18 years I have done a range of freelance creative work for The Parkinson Alliance. It started when I was hired on the spot by Marge to build a website for the newly formed organization. We immediately clicked and became fast friends. That first project resulted in many others, as she continually had a flow of ideas for helping those in the Parkinson’s community and I was part of her team in making those ideas happen. I created websites, layouts for newsletters and patient surveys, a variety of graphic work, photography, and more. It was often challenging but always my joy to be a part of her vision.

Throughout it all was my admiration and love for this unwavering woman who demanded to make a positive difference not only in the lives of people living with Parkinson’s but anyone she came in contact with. She radiated a special warmth and beauty with a uniquely generous soul that inspired people to be their best self. She believed in the fundamental goodness of people and had an uncanny ability to bring forth an individual’s unique talents. Yet, she was also direct, laser-focused, and would not hesitate to bluntly call someone out when she thought it was needed.

As time went on and her disease progressed, I worked directly with her, helping to keep her abilities strong and stimulated. Eventually when I was with her, I became Marge’s voice when others found it difficult to understand her, or typed her words when her fingers struggled, or read to her when her eyes could not open. Amazingly, she never complained about her Parkinson’s. She rarely complained about anything. She simply did what was needed to be done without apology.

No matter what challenges her disease presented her with on any given day, her thirst for knowledge was consistent and unquenchable. Marge would challenge me to find new things to read to her, podcasts to listen to, ideas to write about. There were times we’d land in such a rabbit hole of new discoveries, so far from the point where we started, that we’d laugh and laugh. Once we spent weeks looking up CRISPR gene editing information and ended up comparing what we learned to what was happening on the HBO show Westworld. We further laughed when we learned we weren’t the only ones making that comparison.

She also received immense satisfaction in helping others, especially the underdog. Once we were reading about an online organization that listed funding needed for various classroom projects. We went to the site, started reading about needs, and found a teacher in NC looking to take ability-challenged children to a therapeutic equestrian center. Marge’s eyes widened and she immediately funded the entire project. The teacher, a complete stranger with no connection to Marge, was stunned and delighted. This was not a one-off whim, but a single example of many such projects she would support. I watched her give over and over to a variety of needy causes and people, always doing it quietly in the background without calling any attention to herself.

Margaret wasn’t just about Parkinson’s. She was about life and making the most of it. She was passionate about so many things — animals, marine biology, archaeology, preserving nature, Leonard Cohen, Ursula Le Guin, fighting injustice, the website Brainpickings, and the list goes on. While I loathed what Marge’s disease robbed from her, I met  and developed a deep and special bond with her because of it. I got to work alongside a woman of dignity and strength always rising above that disease and blazing a path so that others could follow in her steps and push onwards. She was the catalyst that connected people and ignited positive change. It was my joy to be with her at the near start of the organization, growing right along with it, and my honor to hold her hand at the end. I was further honored that her husband asked me to write her obituary, although my words pale in expressing how truly profound she was and how grateful I am to have known her. While it’s very hard for me to wrap my head around the fact that she is no longer physically here, I continue to see her face and luminous smile and feel her inspiration. I also see her reflected in all the good, the hope, and the continued perseverance and mission of The Parkinson Alliance to one day realize the goal of curing Parkinson’s, and I am glad to be a continued small part of that mission.
—Gloria Hansen

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