Wow, What a Month!


Wow, What a Month!

I am a family caregiver. That is how I identify in this world now. I do not see myself any differently than the millions of other family caregivers.

Every job I have had in my life, wife, mother, working woman, I always gave each all my attention and tried to do the very best job I could, at the time. I do the same with my family caregiver job. I just go through everyday looking for the best way to do this job.

In doing this, I have become a very vocal advocate for frontotemporal degeneration (FTD), and all of its subtypes. I have voraciously learned all I can about the disease. I have enlisted experts to get the word out about handling this disease. To bring their expertise to the masses in ways they could also learn, even though many can't leave home to attend seminars. Denise has offered our community a wonderful platform to inform and support the FTD world of caregivers.

Apparently, when you put yourself "out there", people seem to see what you are doing and the universe shines a light on your efforts. I do not do any of my advocacy for personal gain, I just want this under served community of struggling caregivers of those with FTD, to have information to make their lives easier and less stressful. The staggering statistics of mortality in this particular caregiver community are astounding, and I want that to change.

Recently, I have been honored to represent my fellow FTD caregivers in some important ventures. I was asked to be on a panel of 12 family caregivers, nationwide, for the National Research Summit on Dementia Care to help shape the future of those doing family caregiving for the dementia population. I take this responsibility very seriously. I want to make sure I represent each and every FTD caregiver to find new programs to help ease their burden of care. I will certainly attend the culmination of our stakeholder workgroup efforts in October at the NIH.

On the heels of this honor, came another. My friend, Dr. Geri Hall, who does the podcasts Talking FTD With Geri, with me here on each month, was a faculty presenter at Resources for Integrated Care for Medicare and Medicaid webinar on other dementias. I was asked to be the voice of the family caregiver in presenting what life is like in the "other" dementia world of care to 1,256 professionals working in dementia care. I had seven minutes to grab the ear of professionals working in this field with the often misunderstood FTD person. It was, again, a great honor that I took very seriously.

This weekend, I put on my advocate hat, once again, and attended a local Senior Expo to promote awareness for FTD ( My son attended with me and we spoke to countless people about this dementia which is unknown to most people. There were over 1,500 attendees and we were pleasantly surprised to be VERY busy at our booth. Both attendees and exhibitors were eager for information. It warmed my heart to give out information that might help even one family get a proper diagnosis for this disease.

I urge you as a family caregiver to get involved. Speak out for your caree. In doing a little, you will find opportunities will come to you to do a lot to help this under served population of family caregivers. Be the squeaky wheel in any small way you can, each voice is important. I am just a family caregiver and these opportunities have given me a voice for all family caregivers. To enrich their lives, and prop them up in their important job of caregiving.

Both of these wonderful, national, opportunities were able to be completed from the comfort of my home, while caregiving. I will gladly give a few hours to help millions of others have a few more hours in their day to get what they need for themselves. Speak out and let the universe come to you with your own opportunity.

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Anthony Zullo

Hi Sharon,\r\nGreat reading your post. I see you are still keeping busy.\r\nGlad to hear things are going as normal for you as possible.\r\nKeep up the good work you are doing.\r\nKudos to you.


Thanks for all you are doing to be a voice for family caregivers & advocating for FTD.\r\nWe appreciate all you are doing!

Lillie Fuller

You ROCK Sharon! You are doing great things! Thank you for your voice! What an honor for you!