When I wrote this in 2014, there was a viral momentum that pushed memory loss and Alzheimer’s disease into the national spotlight. Then, and even now, the United States had a problem that basically needed money to have a chance to be solved. In a time when people are surviving and living through other major diseases, our friends and family members with Alzheimer’s disease — without cures or real treatments — are dying at an increasing rate.
“Americans whisper the word Alzheimer’s because their government whispers the word Alzheimer’s. And although a whisper is better than the silence…it’s still not enough.”
I was surprised to hear Seth Rogen give a speech about his mother-in-law, who was diagnosed with Alzheimer’s disease in her 50’s. It’s the sixth leading cause of death in the U.S. (and is emotionally and financially devastating to so many families) – yet it’s treated like another inevitable disease. I hung on to every word because I understood his pain.
I remembered sitting outside with my grandma one summer and listening to stories about her life. I think I was 17. I definitely didn’t know then what was to come. I wasn’t aware of what could happen to a person, even if you love them. Even if they’re the most important person in the world to you.
The comedian’s story in front of the U.S. Senate’s Appropriations Subcommittee on Labor, Health & Human Services was predictably funny, but still powerful. That committee is the one that was supposed to look at the economic effect of Alzheimer’s disease as well as how much money is going into research.
I was immediately grateful that he lent his celebrity to this cause and shared such a personal story. I was grateful that the C-SPAN video blew up online less than 24 hours after it was recorded. Honestly, if he wasn’t trying to make us laugh, I would have been crying all over my keyboard.
All I could think about afterward was that sharing stories is so important to help others understand what’s important to you.
My grandmother lived with dementia for several years. Before she passed away at 93 years old, she couldn’t recognize her closest family members.
Having dementia means cells are dying in your brain, causing what you would expect: a person to forget. First, small things, and then lots of things all at once, including people they’ve known for decades. Their brain loses the blueprints for activities that you and I find simple, like how to get dressed or eat or which people to trust. Most cases of dementia are caused by Alzheimer’s disease (though there are several others).
An important thing to remember is that Alzheimer’s and dementia are not a normal part of aging, just like cancer is not a normal part of life.
My grandmother had a difficult life. She survived World War II, years of starvation, Stalin and all of the things associated with the Soviet Union. She was forced out of her country and her home as a teenager. At almost 70 years old, she moved to the United States with her children and grandchildren
One of my favorite photos of my grandmother is her as a young girl. I love this photo but it’s difficult to imagine her this way. What were her hopes, her goals or her dreams? That’s something I can’t ask anymore.
As one of the youngest grandchildren I feel that I could never have had as much time as everyone else to know her. I’m sure no amount of time would have been long enough anyway. All I know is that she loved us, and doted on my brother and me in all of the ways she knew how — by telling us about her plants, making fresh bread, forcing us to eat her meals, and then making something new when we protested.
This was not a grandmother who’d let you eat pizza or hamburgers. I remember her laughing at all of the “American” habits we picked up at school. I’m sure we did some strange things in her eyes.
I remember when she learned to read English but couldn’t understand a word. She would read my brother’s t-shirts and ask us what the phrases meant.
She taught me to do crosswords in Russian and I still love them. The little squares remind me of her. Vines on plants and fresh bread remind me of her.
Tell Your Story
Sharing stories gets people out of the shadows, and encourages them to ask for help. But the resources they need have to be there or else it’s just talk. There is no way to prevent, cure or to slow the progression of Alzheimer’s. Unlike other major diseases, diagnoses have actually increased 68% over the past decade. According to the Alzheimer’s Association, more than 5 million people are currently living with the disease. That doesn’t include non-Alzheimer’s induced dementia, nor does it count the number of family members, caretakers, social workers and other invaluable people who spend decades of their lives dealing with the disease.
Seth Rogen mentioned that not so long ago, people who had cancer were ashamed to tell anyone. Though unfortunately cancer is still a leading cause of death, the research for its cure has visibility and financial support.
It’s not easy to share something private, but I’ll gladly do it if it will tell someone that they’re not alone, or it will remind others that we’re still fighting for our loved ones.
Politics, committees and budget meetings like the one Rogen attended happen all the time, but I’m hoping that there will be some breakthroughs given this momentum.
So I ask our Congress, the President and everyone else: What are your memories worth to you?
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.
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.
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.
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.
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).
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!).
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 —
Two national org’s that work for tolerance and civil liberties —
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.