It was our three year anniversary on September 28, our first post was in 2013. Hard to believe.
Our viewership has increased significantly. We have already exceeded the number of visitors this year by almost 170 and page views by over 500 compared to 2015, with 2 1/2 months to go.
I feel good that we are here for people in need, but wish we didn’t have to be. It would be nice someday to do a final post because we aren’t needed any longer.
I’ve been to it 3 times over the years and have found it very worthwhile.
There are vendors from home health care agencies, assisted living, the Alzheimer’s Assoc, CT state agency on aging, etc. you have the opportunity to ask questions, get info.
The speakers have been good and informative. They run it in an interactive way, bringing the mic into the audience and encourage questions and discussion.
The brothers who run it, Gary and Steven Barg, who started Caregiver Magazine, are passionate about what they do. It tends to feel like a big support group.
Here is a link to the agenda. It ends at 2:30 but if you had to leave early you would still get value from attending. Caregivers go for free, professionals pay.
If you haven’t seen it, here is it. The first publicly aired PSA about FTD has reached more than 12 million viewers since August 2016.
The Hope Rising benefit honored David Zaslav, President and CEO of Discovery Communications, whose generosity made it possible.
Wow, just came across these fact sheets about FTD. They look good, easy to read, formatted nicely, great introduction, overview.
From the FTD Talk web site … “FTD talk is designed to provide rapid jargon free updates of recent research findings in Frontotemporal Dementia (FTD). Our main aim is to make the science of FTD easy to understand for the whole FTD community. FTD Talk is run by a group of scientists investigating FTD at the University College London Institute of Neurology in the UK.”
Good job FTD Talk and Thank You!! Click below to see all of the fact sheets.
You can great advice and tips from other caregivers. There is the opportunity to bounce ideas off of each other, as well as comfort in knowing you are not alone, that other people have been there too. And sometimes they may even make you laugh, or just feel good, at a time when you need it the most.
As you look through this list, keep in mind that not all groups are the same. Try a group and see if it is the right fit for you. I left the first group I went to after a couple of months, then found a group that was right for me.
- There are groups that meet in NYC and in Farmington, CT that are specifically for FTD. Both are groups I have gone to, here are the details.
- There is a Dementia Caregiver Group that meets at the Norwalk Senior Center, not specifically FTD, but I generally attend. Details.
- I am in the process of starting an FTD support group in Fairfield County if there is enough interest. Contact me if you are interested.
- Look for an Alzheimer’s group. There are groups that meet in Greenwich, Darien, Norwalk, Fairfield, here is the list for all of CT on the CT Alzheimer’s Association site, along with the contact info and the type of group, some may be for men, women, spouses only, etc.
- There is an active FTD spouse support group on Yahoo. I am a member, have not participated much but do see the posts and there is good interaction. Here are the details.
One on one
- The AFTD offers something called Informal Caregiver Connections. Register for the program and they will connect you with another caregiver, first checking to make sure you and the other caregiver agree to be introduced. Contact them at email@example.com or 866-507-7222.
- I have not formally participated in that program, but have connected one on one with people who have found me online. It has proven to be effective. I am currently in touch with someone from NYC whose spouse was recently diagnosed, she is exploring care options, she and I have not met in person, but have exchanged emails and talked on the phone. Feel free to contact me.
There is still time to get involved and donate!
Food for Thought (FFT), the grassroots campaign created to educate people about FTD, while raising money to help fight this disease, started on September 25 and ends on October 9, 2016.
Here is a link to events accepting online donations.
On September 29, the AFTD held its inaugural benefit, Hope Rising, in New York City at the Pierre Hotel.
More than 400 people attended. Paula Zahn emceed and Tony-Award winning performer Kelli O’Hara sang for the evening’s guests.
Olivia Goldring and Susan Suchan, who has been diagnosed with FTD/PPA, shared their personal perspectives on how FTD impacts individuals and families, and their hopes for the future.