Tweeting a Tribute

A Million Tweets to Remember honours Alzheimer's sufferers and raises awareness about the devastating disease.

Over the course of my life, I have been blessed to have known and loved nine different grandparents and great-grandparents. No doubt this is a gift that few others ever receive. Unfortunately, I have had to watch four of those relatives battle Alzheimer’s disease.

For those that have had a loved one live with the disease and for those that have served as a caregiver, you’ll know what I mean when I say nothing is ever the same when Alzheimer’s rears its ugly head. To see the disease in action is to despise it, resent it, and try to fight it until it no longer exists.

It disrupts and destroys lives, families, and enormous human potential. It is a disease that over 6 million North Americans suffer from – and that is only the number of people diagnosed. I am sure there are millions more who are living with it who have yet to seek the formal diagnosis and the necessary medical help. Count to 70. When you finish, know that another person in the United States has been diagnosed with the disease. Scary.

I grew up as a huge fan of the Canadian rock band Rush. In one of my favourite songs, “Losing It,” Geddy Lee opines, “Sadder still to watch it die than never to have known it. For you, the blind who once could see, the bell tolls for thee.” I have often thought of these lyrics in connection with those I have loved who battled Alzheimer’s.

Was the privilege of getting to know and learn from these grandparents and great-grandparents worth the heart-breaking process of watching them lose the very things that made them human? Things like independence, the ability to remember one’s history and loved ones, and, most tragically, the slow erosion of one’s integrity. To lose one’s memory is one thing, to lose one’s integrity is entirely something else. Might it have not been easier and a whole lot less traumatic if, like most people, I knew only a few or none of my grandparents and great-grandparents?

It certainly would have been easy to believe that. After all, I still have very vivid recollections of what Alzheimer’s did to my family. I remember watching my grandfather trying to eat his soup with his fork and frustratingly try to put his pants on upside down. I remember listening to my grandfather ask my grandmother who she was and what she was doing in his house. I remember driving my other grandmother to my house for a family dinner and have her question me over and over and over again about where we were going and why I had kidnapped her from her apartment. Not exactly the kind of memories any of my grandparents would want me to have.

The one way I have been able to overcome the sadness of those Alzheimer’s-fuelled memories is to honour the wonderful people they were before this disease found its way into their lives. Selfishly, I needed to find ways to do this so the memories that would be indelibly imprinted in my mind were the many profound good ones as opposed to the degrading bad ones.

Many of the profoundly good memories relate to a common trait amongst all my grandparents and great-grandparents: their unwavering commitment to helping those less fortunate than themselves. Whether it related to economic, medical, or family issues, many times I watched them reach out to help others. They generally did so quietly and without fanfare but they always took great pride in their contributions. They whole-heartedly subscribed to the motto “community service is the rent we all need to pay for living.”

It is very much in accordance with that theme and very much consistent with a focus on these profoundly good memories (and thank goodness there are lots of them) that I have developed a burning passion to do something to help eradicate Alzheimer’s from my life and the lives of those around the globe.

So in memory and honour of my grandparents, I wanted to create a project in that spirit – something global, scalable, and permanent. I have spent the last 10 years dedicating a significant amount of time engaging in traditional efforts to raise money and awareness for Alzheimer’s research and care. This time around, I was committed to using the efficiency and low-cost nature of digital technology to make something monumental happen in their honour.

To that end, on Monday, September 21 (World Alzheimer’s Day) I launched a Twitter-based movement called A Million Tweets to Remember (Twitter handle @1Mtweets). The primary goal of the movement is to gather a million tweets that digitally memorialize people (past and present) who have suffered from Alzheimer’s. We have also added a fundraising component to the movement by asking people to consider a donation of at least a dollar for every tweet. The triple meaning of the word “remember” in the title of the movement encapsulates what I hope the project will ultimately be about:

1. The opportunity in perpetuity to digitally remember a loved one with Alzheimer’s;
2. The opportunity for all of us to create a tweet, which in 140 characters remembers all the good qualities of the person being memorialized;
3. The reality that every Tweeter will remember being part of this movement, though sadly those they tweeted about will not have had the capacity to do the same thing.

The early results are encouraging: thousands upon thousands of tweets are shining a spotlight on Alzheimer’s and all its nasty consequences. Most heartening is that we have had people from 58 different countries participate so far and we are only on day eight!

My mom has a saying that I think perfectly applies to the Million Tweets to Remember movement: “If it is to be it is up to me.” Hopefully, we will have one million “me’s” who all feel the same way. No doubt there are millions of people above looking down on us and hoping for the same thing, even if they won’t remember tomorrow what they hoped for today.