parkinson's disease
Life

Honoring Grandma: Parkinson’s Disease Research Now

When I was about nine or ten years old, my grandmother came to live with us. I had never met her before. For all this time she was a distant relative living with my uncle in Uzbekistan, where we had immigrated from several years before.

It wasn’t easy for my parents, both working full-time, to take care of an elderly woman, plus two young kids in a small apartment in Queens. It’s a situation many immigrants and their children experience. I was so happy to meet my grandmother — to celebrate my birthday together and hold her hand — that I didn’t notice something more difficult was happening.

parkinson's disease

Our life with Parkinson’s Disease

My maternal grandmother passed away last year after a long decline from Parkinson’s Disease. There were a few incidents with my grandmother’s health that scared me, but as a kid I thought it was just a part of getting old. The hand tremors would’ve been the most obvious sign that she had Parkinson’s, but I  was too excited about my grandma to notice.

She suffered with the disease for almost 20 years. It’s a disease with no cure, though many treatments options exist with medication and surgery. My grandmother likely felt the first symptoms of PD in the early 90’s when she was living in Uzbekistan, a former state of the Soviet Union. By the time she immigrated to live with my family in the mid 90’s, we were seeing her symptoms and she had not received adequate treatment.

Grandma early Parkinson's disease
Our family, with grandma at the center, in December 2000.

Parkinson’s degenerates cells in a person’s central nervous system (the brain and spine). Though tremors (shaking hands) are identifiable to most people due to the media attention it has received in recent years, the disease causes a severe reduction in quality of life. My grandmother went through bouts of depression both because of the disease, and anxiety from the process of finding the right medication. She ultimately was diagnosed with dementia. PD patients are six times more likely to have dementia than the average person. Some people suffer from psychosis (hallucinations) and decreased impulse control as well. There are other physical complications that result in a person being unable to care for themselves. This leaves family members and other caretakers in a difficult position. It’s also these people who don’t always get the proper recognition, not to mention the mental, emotional and financial support they deserve.

Michael J. Fox Foundation infographic

Though my grandmother lived with us for several years, my uncle took charge of her care upon his own immigration to the U.S. It’s for him, my mother , her home aides, and also for this country that I am grateful. She received 24 hour care for many years of her life and lived to the age of 91. Her aides became part of our family. We watched Russian t.v. channels together after school, gave grandma haircuts and sang songs that she once loved on her birthdays. Though it’s hard to talk about old age with an incurable disease, her life was truly the best it could be under the conditions.

GT_Churchill_Quote

Research Matters

I checked my phone on the morning of December 2, to find out that it was “Giving Tuesday.”  It was started by the 92nd St. Y and the United Nations Foundation in 2012 to encourage you to share causes you care about and have donated to with the hashtag “#GivingTuesday”. I had looked into the Michael J. Fox Foundation many times and decided to donate in my grandmother’s memory that morning.

#GivingTuesday falls on the first Tuesday after Thanksgiving (and after the notorious shopping craze that follows).

parkinson's donation

 

My donation to the Michael J. Fox Foundation is in honor of her, as well as our family and her caretakers. Every donation made on Giving Tuesday in 2014 was matched by MJFF in an effort to reach their fundraising goals. I hope that there is a future where no one has to suffer and struggle with Parkinson’s Disease, nor worrying about the prognosis of a diagnosed family member.

The Michael J. Fox Foundation gives grants to labs researching a cure for Parkinson’s, and treatment and care for those affected. If you decide to donate toward Parkinson’s research, feel free to do so in honor of my grandmother, Zinaida Kogan, and my family. The MJFF spends 89 cents of every dollar raised directly on research, and only .06 cents are spent for bringing in one dollar of donations. They have an amazing score on Charity Navigator, almost perfect on accountability & transparency and financials. You can check out their ratings here*.

If you’re interested in this foundation specifically, sign up for their newsletter, as there are many times during the year where donations are matched (sometimes doubled and tripled!).

Other organizations

There are so many charities and non-profits out there who ask for money. Charity Navigator is a good resource, as well as CharityWatch.Org and Give.Org, to check an organizations effectiveness, transparency and legitimacy. Even your local organizations should be registered as a non-profit or charity before accepting money. Please do your research.

If you’re considering donating, here are some causes I’m interested in:

Any of the highest-rated Alzheimer’s and dementia researchers —

Alzheimer’s Foundation of America / Alzheimer’s Association

Two national org’s that work for tolerance and civil liberties —

American Civil Liberties Union / Southern Poverty Law Center (both are matching all donations until December 31)

A new friend of mine is fundraising on behalf of ‘Embrace Kids’, which supports families of kids with cancer and blood disorders. Donate here.

What cause are you passionate about? Leave a comment to share.

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