Ride The Roller Coaster and Hang On Tight!


Ride The Roller Coaster and Hang On Tight!

My purple hair and purple headphones for dementia awareness.

So most people know that if you compliment my purple streaks in my hair, expect a lesson on dementia to follow and a brochure about Frontotemporal Dementia to be placed in your hand. I have no shame about talking about dementia and how it has and is still affecting my life. Just ask the people in line at the grocery store, or the nail tech, or the person who colors my hair, or the cashier who compliments my hair. They all have a new understanding of dementia, especially Frontotemporal Dementia (FTD).

Although I appear to be a very vocal advocate, none of my efforts are aimed at my own desire for acknowledgment. From day 1, I have worked to make the lives of those families living with dementia, better. I could not recreate the things I have done or said over the years, because any opportunity given to me to speak for those who can't, I take. Yes, some stand out, but putting the spotlight on me makes me very uncomfortable. I am but one voice yelling about the issues presented to dementia care partners.

Recently, I was reflecting on whether I was actually making any difference at all. I felt like the spinning plates were losing momentum and I was tired of running back and forth to keep them spinning. I have always had the gift of gab, as they say, but I felt like no one was listening. I felt stuck. I felt maybe I should just let others take up the fight I had started and just live life with Rod, quietly and peacefully.

I boarded the roller coaster, expecting to take one last ride and then just fade into the background. As the roller coaster moved slowly to the top, I looked back and saw all the legwork I have put into changing the stigma of dementia, and educating about saying dementia not Alzheimer's as a synonym. Educating about the devastation of young families when FTD hits in the prime of life. I saw that collective group of small things pushing the roller coaster higher with all their might. I feel like I am pushing a roller coaster up hill many times a day as I make calls, go out into public, hand out brochures and speak out. My legs tire, my back hurts, but I keep pushing. Maybe it was time to rest.

Well, apparently that was not "the plan". Just as I was comfortable in knowing this was my last ride, along comes three events in the same day that bring me to my knees. First on the list was the most recent Talking FTD podcast here on caregiving.com http://www.blogtalkradio.com/caregiving/2019/06/27/talking-ftd-an-exciting-announcement. I had invited my friend Teresa Webb, who started FrontoTemporal Dementia Advocacy Resource Network (FTDARN) to talk about how the all volunteer organization came about and to do a big reveal at the end of the new $500 Dr. Michelle Messer Scholarship for a young person whose life was affected by a parent with FTD.  As I built up to the announcement, I turned it over to Teresa to announce the scholarship, then it happened. I never expected Teresa to say that I was the driving force behind the scholarship (see my discomfort about being acknowledged). I am glad she was talking, l because I could not, I was trying to collect myself as tears rolled down my face.

Then one of my FTD Redwood friends, Rita Trevorrow, did a segment on her local news about FTD. It was awesome! Hear her "come out" on her husband's FTD: https://www.channel3000.com/news/-there-s-no-cure-and-no-treatment-local-family-shares-journey-with-midlife-dementia/1089698508 I spoke to Rita when she posted this the day after the broadcast. She said something that knocked me back. She said, "I thought about you the whole time". Cue the waterworks, tears flowed. I thought, wow, maybe I have made a difference.

Then the final push of the day came in the form of a letter. I had sent a daily email to my U.S. Representative about co-sponsoring the Young Onset Dementia Act to add young onset people to the Older Americans Act so they could benefit from the same services as those over 60 with dementia. This is HB1903 and the SB901 is the Senate's version, write your reps, too. I sent a list of those joining the effort every day. Then one day, there it was HIS NAME as cosponsor! Then a letter addressed to me about the fact that he had added his name to the co-sponsoring of the bill. By that time, I think I was dehydrated from tears rolling down my face. I was jolted awake to realize maybe I HAD made a difference. An Amazing Difference.

You, too, can make an Amazing Difference by attending NCC19 (National Caregiving Conference) https://www.caregiving.com/ncc19/registration/. I will be there, purple hair and all, knocking you off your feet about YOUR achievements and how much they mean. I am back in the saddle of advocacy. I am at the crest and ready for that heart stopping scream down the hill, petticoats flying!! Look out world, here comes the purple-haired bulldog who never gives up!!!!

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This is soooooo awesome, Sharon!! Kudos and congrats -- you inspire us to remember our voice matters.