Passing It On

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Passing It On

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hands-543593_640One year ago, during World FTD Awareness Week, I watched "It Is What It Is."

It was posted by Mar. My mother-in-law had Pick's disease (the previous name of Frontotemporal Degeneration), so I watched this video. My heart stopped, as I realized my husband had the symptoms of FTD. We were very fortunate in receiving an accurate diagnosis just three months later. Most people who have FTD spend years and years searching for answers to odd behaviors.

A lot has happened in this year. I became a hamster in a wheel. Getting all our paperwork in order through an Elder Law attorney, selling our travel trailer, trading in two vehicles for one vehicle, becoming the only driver in the household, taking over every financial decision, getting workers to do what Rod used to do around the house, getting Rod onto SSDI when he had to stop working, creating an FTD Chat for support for FTD caregivers here on caregiving.com (thanks to Denise), starting a monthly podcast with an FTD expert Dr. Geri Hall here on caregiving.com (another huge thanks to Denise), raising FTD awareness with a festival booth, taking AFTD training as a volunteer and visiting facilities to explain FTD, starting a local face-to-face support group for FTD caregivers, becoming a Certified Caregiving Consultant (thanks again to Denise), making the most of our memories by traveling every couple of months with The Twins (my 94-year-old Mom lives with us as well as my FTD husband), and watching my once loving and carefree husband disappear daily.

This is, once again, World FTD Awareness Week. I want to pass on knowledge that might help one person find their way through an FTD diagnosis. This morning, on the Today Show, Matt Lauer spoke to David Newhouse (who lost his wife to FTD and now his brother has been diagnosed, as well) and Dr. Huey from Columbia. Watch that segment here.

Yesterday the NY Times ran an ad on FTD.

This is also Food For Thought week. There are fundraisers going on across the country to find a cure. Those of us dealing with FTD would like having a treatment, there are currently no treatments. Watch for a fundraiser near you. Visit www.theaftd.org to find a fundraiser near you, to donate, or to just learn more about this terminal disease that robs people of their personality in the prime of their life.

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4 Comments

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Denise

I love this post because we see that life continues during a time when life can stop. \r\n\r\nKeep going, Sharon. You inspire us to get going. :)

Sharon

Thank you all for your comments_mysql

MikeLur

I woke up in the middle of the night, got on the site and discovered this post. I clicked on the link for \"It Is What It Is\" and saw it was 20 minutes. I said I wasn't going to watch the whole thing, but it was so compelling I couldn't help but finish it. I learned a lot, thank you for educating me about this disease.

Kathy

Only with awareness are we going to get any closer to a cure!