Alzheimer’s disease sucks. I’ve seen it take my mother-in-law from a successful teacher who taught children to read to a shell of her former self who doesn’t speak and needs help eating, bathing and going to the bathroom. And the worst part? There is no treatment or cure to slow or stop the progression of this horrible epidemic. For that reason, it is imperative we come together and raise awareness of this horrid disease. It’s not just affecting Americans, it’s a global issue and it must be tackled now by investing more money into research.
That’s why I’m raising awareness by sharing my testimony to senate with Alzheimer’s Research UK.
‘Something was off’
I started dating my wife, Lauren, nine years ago when her mother was almost 54 years old. The first time I met her parents, being the mensch that I am, I was excited to spend time with them and make Lauren think I was the type of guy she should continue dating. It was this trip, the first time I met my now mother-in-law, that Lauren first admitted to herself and then me that something was off with her mother. I guess the clues were unfortunately easy to spot since both of Lauren’s mother’s parents had Alzheimer’s disease. Soon after this trip, at 55 years old, Lauren’s mother was diagnosed with early onset Alzheimer’s.
‘The full, ugly truth’
After forgetting who she and her loved-ones were, my mother-in-law then forgot how to speak, feed herself, dress herself and go to the bathroom herself, all by the age of 60.
Now at this point my impression of Alzheimer’s was probably what I assume most people’s impression is. I thought it was something that only really, really old people got and I thought the way the disease primarily showed itself was in the form of forgotten keys, wearing mismatched shoes and being asked the same question over and over. This period, which was the only way I had seen Alzheimer’s displayed in movies or television, lasted a few years for Lauren’s mum. After that, however, was when I saw the full, ugly truth of the disease. After forgetting who she and her loved-ones were, my mother-in-law, a teacher for 35 years, then forgot how to speak, feed herself, dress herself and go to the bathroom herself, all by the age of 60.
Lauren’s father and a team of caregivers dedicate their lives to letting my mother-in-law be as comfortable as she can be. They would love to do more but can’t because, as you’ve heard, unlike any of the other top 10 causes of death in America there’s no way to prevent, cure or even slow the progression of Alzheimer’s disease.
‘Shame and stigma’
Another thing I didn’t realise until I was personally affected was the shame and stigma associated with the disease. It was before I was born, but I’m told of a time when cancer had a stigma that people were ashamed by. Celebrities and other public figures that were stricken would hide rather than be voices of hope for people in similar situations and although it’s turning, this is currently where we are largely at with Alzheimer’s disease, it seems like.
‘Hilarity For Charity’
And it’s because of this lack of hope and shameful stigma that my wife, some friends and myself decided to actually try and do something to change the situation; we started Hilarity For Charity. Hilarity For Charity is a fund we have as part of the Alzheimer’s Association to raise money to help families struggling with Alzheimer’s and support cutting edge research.
‘House of Cards’
I came here today for a few reasons. One, I’m a huge House Of Cards fan. I’ve just marathoned the whole thing and I just had to be here. Two is to say people need more help. I have personally seen the massive amount of financial strain this disease causes and if the American people ever decide to reject genitalia-driven comedy I will no longer be able to afford it. Please don’t. Therefore I can’t begin to imagine how people with more limited incomes are dealing with this.
As you’ve also heard, studies show that Alzheimer’s and related dementias is the most costly condition in the United States. Yes, it’s more costly than heart disease in a country where for a dollar and 29 cents you can get a taco made out of Doritos. They’re delicious but they’re not healthy.
‘You’re not alone’
While deaths from other major diseases like heart disease, HIV and strokes continue to decline, deaths from Alzheimer’s have increased almost 70 per cent in the last 15 years. Over five million Americans have Alzheimer’s and at this rate, in 35 years, as many as 16 million will have the disease. The third reason I’m here is simply to show people that they are not alone. So few people share their personal stories, so few people have something to relate to. I know that if me and my wife saw someone like me talking about this it would probably make us feel a little less alone.
‘Americans whisper Alzheimer’s’
Americans whisper the word Alzheimer’s because their government whispers the word Alzheimer’s.
Americans whisper the word Alzheimer’s because their government whispers the word Alzheimer’s and although a whisper is better than the silence that the Alzheimer’s community has been facing for decades, it’s still not enough. It needs to be yelled and screamed to the point that it finally gets the attention and the funding that it deserves and needs.
‘Take more steps’
I dream of a day when my charity is no longer necessary and I can go back to being the lazy, self-involved man-child I was meant to be. People look to their government for hope and I ask that when it comes to Alzheimer’s disease you continue to take more steps to provide some more.