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The Disease That Took My Father's Speech Away

I had never even heard of "FTD" (frontotemperal dementia). Immediately, I hopped online and began researching. Within minutes I discovered the truth -- Dad was going to die. Shortly after that, he began misplacing his words, not knowing how to verbally express what he knew he wanted to say. Soon it got to the point that he could only answer yes or no questions...and then by December 2010, he lost his words entirely.

That's me and my dad on one of the last walks we'd ever take together.

Dad, Chapter 1 -- FTD

The past two Autumns, my family has participated in the Walk for ALS research. We have raised thousands of dollars for the foundation, and we all walk under team leader, Mom, for "Mr. P's People." That's what a lot of my father's students had called him. Each time, all on board sport purple attire in honour of Dad's favourite colour, and hit the trail determined to make a difference. It is after all, a cause near and dear to our hearts, and in the first year, 2011, I managed to cry only the my sisters and I watched a fellow about Dad's age rise up from his wheelchair to take the final few steps across the finish line. He had ALS. He was able to do the walk that year. Dad would have loved to have been there too, smiling and giving a big "thumbs up" to everyone he met along the way.

With my Dad, the ALS came second. First it was the FTD.

REWIND -- Wednesday, February 10, 2010

I received an email from my mother that day that would change my world:

"Doug and I had an appointment with the family doctor and we have found out that Dad has FRONTOTEMPERAL DEMENTIA. It is not reversible and we cannot do anything to stop it from progressing. If you want to know more about it check out WebMD for more information, but the doctor tells me that we will read stuff there that we do not want to hear. I have not yet looked it up so I cannot tell you what there is. His brain showed shrinking of the frontal and temporal lobes. Dr. tells us to go off to Florida, because there will not be any episodes that we have to worry about. When we get back we are to see him after seeing the neurologist on April 1st. I was going to call you but I could not get through a conversation with your sister without crying. I will also send this email to your other sister and we can talk later when I get my head around this latest info.

Love, Mom"

I didn't get it. I had never even heard of "FTD." Immediately, I hopped online and began researching...I needed to know. Of course, within minutes I discovered the truth. Facts. Dad was going to die. Not right away, but a lot sooner than anyone ever plans. He was a retired teacher; such an intelligent, wise, witty, clever guy. He was an athlete, playing slo-pitch, volleyball, hockey and golf his entire adult life. How could this have happened to him?

My family got together the following weekend to discuss. That just so happened to be "Family Day" weekend. The five of us gathered to eat, drink, snow sled at the local hill, chat, laugh and be as we always were. We played with my niece and nephews, lazed around the house, and did as we had always done while all together. One evening however, we found ourselves all huddled in a group in the middle of the kitchen, crying. We knew things were changing from that point on. I will remember that moment for the rest of my life.

Looking back in time, we tried to recall any hints pointing to Dad's intruding illness. It was June of 2009 that we began to suspect a hearing problem; Dad would often respond to us by asking, "what?" rather than answering the question. This was strange because with my polite and eloquent pops, it was never "what," but always "pardon." So he clearly wasn't hearing us, right? No -- now we know it was not because he didn't hear the was simply that he didn't know how to answer them. His brain had already begun to jumble up words.

Shortly after that, he began misplacing them, not knowing how to verbally express what he knew he wanted to say. Soon it got to the point that he could only answer yes or no questions...and then by December 2010, he lost his words entirely. At this point it was a lot of "Pearson family sign language" and "thumbs up or thumbs down" that got us by.

Within months, dad deteriorated to the point that every interaction was like that with a three-year-old child high on drugs. He was unable to eat, dress, or function on his own. Simple processes were impossible, communication an art that only my dear, sweet, supportive, care-giving mother could perfect. But all the while, dad would smile the hugest smile and giggle the most childish giggle, as he enjoyed all the ice cream, milkshakes and moments he had left.

It makes me so very, very sad to think that my father knew what was happening to him through all of this. This wasn't Alzheimer's. My dad never really forgot anything. He knew who we all were, who he was, and what was happening to his mind and body. It must have just killed him to not be able to talk about it.

But we all stood by, saddened by what was going on, but firm in our resolve to support and stay positive as long as possible. This was FTD. We could handle this. In truth though, I was scared. Terrified.

That was the beginning of our family's 15 month journey with FTD & ALS. An illness that no one ever talks about, most people have never heard of, and even as I lived it, I denied was even happening.

And to this day, I have an utter disdain for any and all three-letter acronyms.

Please support research into the other illness that took my father's life, ALS. You can register or donate to the ALS Yoga Challenge in Toronto that I am committee member for, and you can bet that I will be doing six hours of yoga that day for my Daddy!

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