Woman has managed all her life to live with this little-known disease
RIVER FALLS, Wis. -- Natalie Kusilek, 76, of River Falls, never dreamed that a one-paragraph letter written to her seven children would lead not only to a large donation to the International Essential Tremor Foundation, but also to her speaking about the condition and the foundation to a national magazine and her local paper.
One hopeful request to raise $200 has snowballed to 14 times that amount.
Kusilek appeared in the 2012 fall-winter edition of IETF's bi-annual magazine, "Tremor Talk."
Kusilek was in her early 20s when essential tremor (ET) began affecting her and in her mid-30s when doctors diagnosed her.
After getting a brochure earlier this year about the IETF's fundraising campaign, the mother wrote a letter to her seven kids:
"Dear Kids: There is a national fundraiser going on to raise enough monies to do research for IETF. You all know how much I have suffered with this condition, as well as other members of our family who have also shown signs of this disease. I was wondering if each of you could send a check in the amount of $25 and with all of us contributing that much, we could have $200 toward the cause...They are trying to raise $250,000 and will then have enough to go forward with research for this cause, and perhaps discover a cure. It may not be in my lifetime, but perhaps in yours! I hope this isn't asking too much. If it is, send what you feel you can afford or nothing at all. I know you all feel for me and know how much it has altered my quality of life. Each day is a struggle. Love you all so much."
One of Kusilek's daughters, Teri Renslow, decided to forward the request to extended family and friends.
She began her letter with, "My heart aches, and I weep as I read the letter I received in the mail today from my Mother...Something in me is screaming to share this in hopes my Mother could possibly send a lot more to this organization than $200.00..."
Kusilek said she didn't know a thing about the extended request until she got a phone call, "My sister lives in Wyoming and said, 'My check is on the way,' and I asked, 'What check?'"
Renslow said about her mom, "I wanted her to be surprised."
Kusilek was, especially as the checks kept coming to her.
She became nervous after accumulating $1,000 worth of donations, so she sent those to the foundation. A little while later, she'd collected another $840.
The local efforts have generated about $2,800 so far.
The foundation director called Kusilek with high praise for her fundraising efforts and a request to feature her in the magazine.
ET touches millions
Essential tremor, says Kusilek, is a little-known disease about which she'd like to raise awareness that will lead to more funds and more research.
The IETF website says ET is a neurological disorder that usually begins in the head, hands, voice, legs or trunk and is often mistaken for Parkinson's disease or dystonia.
Essential tremor has no known cause or cure and affects about 10 million Americans of all ages.
ET also goes by the names familial tremor, benign essential tremor or hereditary tremor.
Kusilek says her mother had ET, but her twin sister does not.
Kusilek has tried the few medications available but felt they didn't work well. The local woman trembled so much, she had to sign her name using a rubber stamp.
She said, "You never realize how many forms you have to fill out until you can't fill them out yourself."
Many people with ET have trouble eating, drinking and holding their head still, which is especially bothersome when they're trying to drive or read.
She's aware of stares in public and says she's gotten questions in the grocery store about the tremor.
Kusilek opted in 2001 to have deep-brain stimulation surgery on one side and says, "It helped my hand tremor but not my head tremor," adding that it's nice to be able to write and hold a coffee cup again.
Kusilek said she was basically diagnosed through the process of elimination after physicians ruled out Parkinson's, multiple sclerosis and other neurological conditions.
The spunky local woman says the only time the tremor stops, is when she lies down to sleep for the night, with her whole body completely at rest. She said with Parkinson's disease, the tremor doesn't ever stop.
Kusilek says as soon as she awakens, the shaking and "daily battle" begin again.
Wringing out the good
Kusilek said she feels good about the money and awareness she helped raise for the IETF.
Kusilek said she exercises twice a week and is glad not to have to take medication every day. She hopes to see a cure developed that doesn't involve dangerous brain surgery.
The IETF's annual fundraiser is named Tulips for Tremor.
People can make cash donations and buy tulip bulbs -- chosen as the representative flower because they're colorful and adjust their position to find the best sun.
While pin supplies last, each person who gives $25 to IETF receives one.
Kusilek praised the efforts of former U.S. Congressman from Kansas, Dennis Moore, who worked in 2010 to have March designated as National Essential Tremor Awareness Month.
Anyone interested in donating to the IETF or learning more about essential tremor, can go online to www.essentialtremor.org.