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Owner, "MAP Wellness" - a culinary nutrition and wellness company. Writer. Passionate cook, raw food chef, reiki practitioner, yoga teacher, and LIVE WELL educator. ​do yoga. enjoy good food. run. plant food. cook. savour wine. read books. buy good food. love. grow your energy. find peace. enjoy food. have passion. skip. eat food. do yoga. listen to jazz. have presence. be present. bike. read. see. hear. be. live. love.

Saturday, September 24, 2011

Dad Chapter 1A - FTD

This morning my family and I walked in the London Ontario based walk for ALS research.  We decided to do this earlier this year, and managed to raise well over $2000 for the foundation, and we all walked under team leader, Mom, for team "Mr. P's People".  That's what a lot of my father's students had called him.  We all sported purple attire in honour of Dad's fave colour, and hit the 5K trail in Sunnybrook Park.  It was a great morning!  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 this 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.


Wednesday, February 10, 2010

I receive and email from my mother that day that would change my world:

"Doug and I had an app't 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 our WebMD for more info and the dr 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 Bronwyn without crying.  I will also send this e-mail to Steph 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 found out things I didn't want to hear.  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 are.  We played with my niece and nephews, lazed around the house, and did as we had always done while all together.   One evening we found ourselves all huddled in a group in the middle of the kitchen, crying.  We knew things were going to drastically change 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 for a couple of reasons...with daddy, it was never "what", but always "pardon".  And he clearly wasn't hearing us, right?  No - now we know it was not because he didn't hear the was 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 down" that got us by.  

It makes me 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.   I have a newfound disdain for 3 letter acronyms.

1 comment:

  1. Well written, little sis. I remember that Family Day perectly. Had we know what we would face AFTER that.....


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