July 17: Anniversary of a Diagnosis

Four years ago, July 17, 2009, Vicki Wells Bedard and her daughter Beth were at the doctor’s office to receive results of Vicki’s recent medical tests. On that day, Vicki wrote this and more in her journal:

I sat before Dr. Bazoki, with Beth, and we conversed like over coffee. “Your mother has an amazingly brilliant mind,” she said. “It may have kept her alive to this point.” Our jaws slung low. “I believe it is Frontal Temporal Dementia – FTD/Picks.” and she said she would eat her hat, if it wasn’t. We sat there stunned. Beth began to weep. “I was so afraid it was Alzheimers,” she said, quaking. “I was so afraid we were all at risk. Thank you! Oh, Thank You!!” and I watched, not here nor there, as she amazed me with her deep grief being relieved.

But in the weeks and months that followed, Vicki, her children and several friends began to learn more about this “FTD/Picks” disease – and the news was more and more discouraging. It was the start of coming to grips with a “hidden” disease and a journey that has brought unexpected high points and many lows. It’s a solitary journey in many ways, but one strengthened by faith (most days) knowing that God is close even when it seems God is hiding. And there are a few people taking this journey with Vicki. I’m Jim Coyle, one of the people honored and blessed to walk with Vicki these days and years.

Today is the 4th anniversary of Vicki’s FTD diagnosis and she’s napping again as I write this. Vicki naps a lot now. And there have been many other changes in her life the past several years. You and I and others affected by FTD – as persons with FTD, their families, their friends – have been sharing Vicki’s experiences through this blog.

I don’t know whether Vicki will write an “Anniversary Post” today, but she has written two new blog posts on Vicki’s Voice in the past few days.

I’ve known Vicki for over 25 years. But the last 4 years, laughing and crying with Vicki and offering what support I can, have profoundly changed me inside. Vicki and Papa (God) have introduced me to some amazing people on this journey. And shown me anew how precious life is at every stage.

When Vicki was diagnosed 4 years ago, her FTD was already advanced and had caused significant disruption in her life – without knowing what was wrong. In 2009 Vicki was told she had 6 months to 2 years to live.

Today we mark 4 years since her diagnosis. How do we “celebrate” this anniversary? Vicki’s life and health have changed significantly over the last several years. But Vicki is still Vicki – and I Celebrate her!

Thank you, Papa, for every new day for Vicki. And me. Jim