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Myrna

Just turned 68 and most of the last nine years has been productive even wearing the imposing cloak of frontotemporal dementia and Alzheimer’s disease.

After some time knowing that something was wrong – I couldn’t do bookkeeping for my company, I was anxious and quick to anger – I went to my general practitioner. After some test he called me in and said “You have frontotemporal dementia – go home and get your affairs in order.” I didn’t have questions – I was just in shock!

After a few more years diagnosis was confirmed at the UBC Brain Health Centre in Vancouver.

Now what? Having a particularly bad day, I looked up the Alzheimer Society of B.C. and called them crying. With their support, I began my acceptance.

Passionate advocacy has become my mantra. I tell everyone – whether or not they are interested – that I have dementia. I welcome their “you don’t look like you have dementia.” Sometimes, this comment really hurts – it feels like you don’t believe me.

My language deficits, lack of filters, sleep disturbances and my inability to begin or complete everyday activities has such a personal impact for me and those around me.

What can we do, as communities across Canada, to clear some of the debris from this journey. Could we require compulsive training for all those working with people living with dementia? Could we require basic caregiving education and support? Do we have to wait until persons with dementia are hospitalized before finding appropriate care is offered? Could we prepare more, offer better services, save our healthcare services from this coming tsunami? Dementia hurts all of us. Let’s react.

I need your understanding. I need a massage and a pedicure. I need less fear and sometimes loathing. I need your respect, understand standing and support – as well as a partridge in a pear tree.

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Lori 1768 days ago

Oh Myrna, You are so brave to tell your story and let people know that you want to be treated with respect and understanding. My first thought was "what does someone with dementia look like?" Thank you so much for sharing and I am sure that you have touched many and helped more.

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