Spirit of Hope – Shari Finsilver
The International Essential Tremor Foundation presented the inaugural Spirit of Hope Award to Shari Finsilver in 2010, in recognition of her extraordinary effort to bring hope to those suffering from essential tremor (ET) and their families. For years, she has supported the IETF’s mission and the ET community by raising awareness, leading fundraising efforts, leading a support group, and donating time, money, and resources generously on behalf of the IETF.
“When I was 11-years-old. I noticed that I couldn’t draw a straight line or paint like other people in art class. By 13, my tremor had become very apparent to me in both hands,” says Shari Finsilver. “I also noticed a head tremor for the first time when I was walking in the processional into the auditorium during my elementary school graduation. Being in front of people caused my head to start shaking pretty badly and I did everything in my power to try and stop it so no one would notice.
“By 40 or so, my ET had become ‘full-blown.’ I had it in both hands and arms pretty badly (it was getting more difficult to hide), along with a milder tremor in my head and voice. I could also feel it internally. If you touched my body, then you could feel it quaking during my most nervous moments.”
IETF: What was life like before your diagnosis? How did you feel? And how did you feel after the diagnosis?
Finsilver: I did not handle it well. I never confided in my family (or friends), which is pretty sad and incredible considering we ate dinner together every night and were very close. I just found more ways to hide it from others. My coping skills became very creative, but at the expense of my mental anguish (both over why I was shaking and constantly trying to hide it).
My mom finally discovered my shaking hands when she was sitting across from me at a large family holiday dinner. While holding a fork, my hand just started shaking uncontrollably and the fork flew out my hand. She was horrified and terrified, immediately thinking I had Parkinson’s. She took me to a neurologist, who diagnosed me with essential tremor. I was extremely lucky to receive an accurate diagnosis from the first doctor I saw, as the majority of ET patients seek out several doctors before receiving the proper diagnosis.
I don’t remember exactly how I felt upon hearing I had ET, but I know I must have been relieved to have a name for my unknown, strange condition. The doctor prescribed Librium, which I remember trying. Because it did not work, I just stopped taking the medication. I still continued not to talk about my ET nor did I allow anyone to see it. I tried desperately to hide it at all costs. The way I handled my ET throughout my life was absolutely harmful to me, my family and friends. Because I did not talk openly about it, I made everyone uncomfortable. When I ran a support group in the 2000’s, I urged patients to be open and candid about their tremor so as to make other people more at ease, as well as yourself.
IETF: Does essential tremor run in your family?
Finsilver: Yes. My father had it in his hands. It was never diagnosed, so I was not aware of what ET was prior to my diagnosis. He always said it was due to his time in the Navy during WWII. His tremor was milder and embarrassing, but he just ignored it. It did get worse as he aged, probably due to his poor health and medications he took. My father’s paternal aunt also had undiagnosed ET, resulting in very bad shaky hands. She was older and I believe her hand tremor continued to get worse as she aged. My father was one of three, but his two siblings did not have ET. I have one sibling and she does not have ET. I have two children, one of which has a mild case of ET in his hands.
IETF: You underwent deep brain stimulation surgery (DBS) as a treatment for ET. Can you share a few details about that experience and the results of the surgery?
Finsilver: My sister saw a story about DBS on 20/20 in 1996. She taped the program for me. When I saw it, I was absolutely amazed and knew that I was going to have DBS to finally get some relief for my uncontrollable tremor.
Prior to this, I had seen a neurologist when I was about 40-years-old since my tremor had become so much worse. I did not care for the doctor nor the way he prescribed the medication. I had such a bad experience with the medication that I stopped taking it.
To make a very long story short, I eventually had the surgery in February 1999. I could not get on that table quickly enough. I convinced my neurosurgeon to do a bilateral DBS because I was young and extremely healthy. I wanted the use of both hands and knew that my head and voice tremor could probably be controlled with a bilateral surgery. The surgery went very well. I was so excited to go through with it. My family and friends were a wreck, but I was totally prepared and psyched! I used a book and tape called Prepare for Surgery, Heal Faster by Peggy Huddleston.
I was awake during the surgery so the neurosurgeon can determine if he had targeted the correct location in the brain. You don’t shake when you’re sleeping. After placing the electrode in the thalamus, they asked me to bring a cup back and forth to my lips while in the surgical suite. I remember watching my hand move as if it was an out-of-body experience. I just cried as my hand moved back and forth steadily for the first time in almost forty years.
Every day of the first 1½ years was like a new discovery. I was doing things for the first time in my life with control – no longer embarrassed and able to do things I had not been able to do before. Simple, everyday matters were mind-blowing and monumental to me – cooking, using a camera, taking change from a cashier, pouring beverages and serving them to friends, holding my grandchildren, eating in restaurants, holding my own plate and getting my own food at a buffet, writing legibly and beautifully again…
In another instance, I was at the grocery store by myself after the surgery for the first time. I received change back from the cashier. I remember that I was thankful I was wearing sunglasses because I was crying! I was able to hold my hand out in the air to receive the change without having to lay it flat on a surface to steady it.
IETF: What has interested you in providing continual support of the IETF?
Finsilver: I always felt like I was alone, the only oddball with uncontrollable tremor. Little did I know, until I began doing research in the medical library and then meeting hundreds of other ET’ers online during an IETF online support group in 1998, that there are an estimated 10 million Americans who have ET. After my surgery, I just felt compelled to make sure that no one ever felt the way I did – alone, isolated, and unaware of the help available to them.
After I started the first IETF support group in Michigan in 2001, I just kept discovering ways of staying connected and involved. There is so much need for building awareness and educating both the general public, as well as the medical community about ET and the IETF.
IETF: What does the IETF’s purpose and mission mean to you as someone with ET?
Finsilver: I am so very grateful for the IETF. I discovered the organization when I saw their brochure in my neurologist’s office in the 1980s. I immediately joined and have every newsletter that was published since the beginning of the organization. When looking back at all the newsletters, I am just so proud to see how the IETF has grown. I feel like we have all grown up together! Without the IETF paving the way for us ET’ers, we would be back at square one in terms of awareness, education, support and research. The IETF has made such huge strides in every one of these areas. Yes, we still have a long way to go, but we’re doing it together with thousands of members joining us as we continue our journey. This just means so much to me.
IETF: Tell us about your professional career and any other accomplishments of note.
Finsilver: I have a Bachelor of Science in Math and a Master of Science in Industrial and Operations Engineering from the University of Michigan. I was a Management Engineer in a hospital setting for many years and then did some private consulting. Then, I helped my husband grow his property management company by computerizing the company. I managed the computer network until it grew to fifty users. By that time, I told him and his partner that they needed someone with far more skills than I had. That decision was a good thing now that the company employs hundreds of employees with offices in numerous states.
Next, I turned my attention to being a full-time grandmother and community volunteer. My seven grandchildren (including two bonus grandkids) are my greatest source of pride.
Besides continuing to help out in any way at the IETF, I am also devoted to the Henry Ford Health System, which has one of the top neuroscience departments in the country. I chair the Council of Advisors for the hospital’s Neuroscience Institute. Because my mother died of breast cancer at 57, I am involved in the Henry Ford Mothers, Daughter, Sisters & Friends annual luncheon for women’s health.
I am also devoted to our synagogue, Temple Israel, where I have been involved on various committees and as a committee chair for many years. I first got my start as a volunteer with the March of Dimes. I remember seeing an ad on TV, just after my first child was born. I thought, “How can I not do something when we were so blessed to have a healthy child?” That was the start of community involvement for me and my husband Stanley. And we haven’t stopped since.
IETF: How did/do you manage your personal and professional life with ET?
Finsilver: Prior to my DBS surgery, family support made all the difference in the world for me. My husband and children always ran interference for me when it came to trying to function “normally.” They always reached for the plates of food being passed around the table so no one saw me shaking. They always did the serving, again to spare me. I didn’t dare navigate a buffet line without one of them there to help me.
But, as my ET progressed and became more difficult to manage or hide, I began declining invitations. Since my tremor was worse in the morning, I routinely declined breakfast invitations. Then, as my ET became worse, the lunches were the next to go. Finally, I was declining dinner invitations. This was a terrible burden to place on my husband, since we were normally very active people. I’m still not sure how he put up with this insanity.
Professionally it was tough because my job demanded me to attend meetings, chair meetings, make presentations, etc. It became more and more difficult to hide my shaking hands, voice and head. Again, just being open and honest about my ET would have helped me and everyone else around me.
IETF: What message do you wish to share with others adapting to life with ET and future generations?
Finsilver: Knowledge is so empowering. When I ran a support group, I always advocated that ET patients and families should become as knowledgeable as possible about their ET. Learn everything you can about it.
Make sure you see a movement disorder specialist since this is a neurologist who has specialized training and is better able to help you. Learn about coping skills from other patients with ET. There are many tricks and tips that can help you conserve your energy and make your life easier.
Take care of your health and body. No one is going to do this for you. The foods you put into your body and the exercise you challenge your body with are all going to allow you to handle your tremor as well as you possibly can. You will feel like a million dollars and be strong.
Parents of younger children should be advocates for their children. The IETF has a wonderful guide available to help you help your child as they make their way through life. It was developed by a teacher whose child has ET.
And please be open and honest about your ET so that you make yourself and those around you comfortable with your shaking. Rather than focusing on your shaking, they eventually ignore it.
And please become a member of the IETF. The IETF is there for you. I only hope and pray that my grandchildren, their children and all future generations do not have to deal with ET. With everyone working together, I pray that we can find a cure.