AFTD convened the FTD community for the 2014 AFTD Educational Conference in White Plains, NY. It was filled with the best FTD medical minds in the country, caregivers and those affected with FTD.
Two years ago AFTD decided to break the separation barrier and invite FTD Patients. I was one of 4 that attended that conference in Atlanta. Last year in Utah there were 12 affected with FTD and this year a whopping 36 FTD'ers showed up in NY. This was the worlds largest congregation of those affected with FTD to date. The phone lines at Guinness records were ringing. I've been lucky enough to meet the same people year after year. We've become friends throughout the year, as well as a barometer to ourselves. A wonderfully realistic and surrealistic exposure of our lives and the shape of things to come. Was also happy to see many of the 90+ from my FTD Patient Support Group come to NY from across the country. It was a show of alliance in support in the fight against FTD and to show the desire that those with FTD want and need there voice heard. Want to be heard that there needs to be a larger coordinated effort in helping FTD'ers get together and that we're not a bunch of crazies that will have a riot. Yes, all of us reach the stage where we can't communicate, but with earlier detection and diagnosis more of us are living longing. Yes, there are those that are 2 years and out, but many are now known to live 10+, 20+ years. Each person has a different degree of awareness and insight. One thing is for sure. We are people sick with a rare brain disease that finds comfort and understanding being around others that sure the same disease and fate. Doesn't matter how different the variants under the umbrella disease known as Frontotemporal Degeneration vary. sd :-) FTD is FTD to those who have it and we see ourselves in each other.
You take the normal person fighting a brain disease and behaving inappropriately, not working, not able to drive and they spend most of there time in bed watching TV or being shuttled to old age centers where there out of place. It's enough to send anyone over the hill. It's a proven fact that FTD'ers in contact with FTD'ers whether online or in person are an immeasurable amount of support. Better for the FTD'er, caregiver and the family. This is the proven ripple affect. I've been running a support group fro 90+ FTD'ers for over two years and this the feedback from FTD'er and caregiver alike. AFTD is witness to this with the AFTD Director, Sharon Denny being a permanent guest member and the only one in the group without FTD. Members of the FTD Patient Support Group routinely get together. In states like Colorado they meet monthly at an assisted living as well as others. When traveling we constantly reach out to meet one another. Phone calls and little gifts in the mail help. I've met dozens and dozens of FTD'ers in my travels and many have visited me. Yes, this isn't for everyone with FTD, but three's nothing like visiting someone in assisted living who is in there 40's or 50's where the average age is 80+. Many with FTD get placed before there time. This is not a reflection on the caregiver or a societal cause. This is cause and effect by the insidious disease know as FTD. Nothing in the near future will change this, but we can find more comfort for those with FTD everywhere.
36 of 248 attendees at the AFTD conference were those afflicted with the disease. There is a Hebrew word called "Ratzone". It means extreme desire. All 36 had this in common for wanting a better life with happiness and support.
One person from my group suffering from both FTD and AD had Amtrak special services help get her to New York from Delaware. This former genetic researcher made the trip alone. She is pretty far into into progression and showed more guts than anyone I've ever met in my life. Another FTD'er came in with her sons from NJ to pick her up from NY Penn Station and take her to the conference. All to make it to the AFTD conference to learn and contribute. These are my FTD suffererer heroes.
I'm forever grateful to AFTD for inviting FTD patients as well as having travel grants for those of us who couldn't afford to make the trip.
Every year I host a pre-AFTD Conference Patient/Caregiver dinner the night before the event. This year we had 37 at the dinner. It was at a local Italian restaurant. We took over the restaurant and the dinner lasted 3 hours. Most of us never met each before this dinner and it's amazing how FTD'ers can communicate and blend together. This dinner wouldn't have been possible without Diana Winoker (FTD'er) who made all the arrangements. Diana like me has no caregiver and came in at the last minute and rescued the dinner after I faltered and couldn't organize anything. Diana broke her ankle 3 days before the Conference and still managed to come up from Florida. Cast and all. Diana was also featured in a Alice G. Walton Forbes FTD Patient Series. Forbes - Diana Winoker
We also had a breakout session meeting with the 36 FTD'ers that went on for 90 minutes. We all shared and learned. We understood each other and there was a bit of gruff. Big deal, we have FTD, apathy rules and we continue on unfazed and kept on going. No caregivers or outsiders to be shocked or scared away. There is no way to describe how much this meant to the participants. Sharon Denny led the group with my help. I used to lead it, but am sort of taking a back seat. Just not to sure of myself anymore. I will say that one FTD'er that was having language issues had the most amazing step in rescue I've ever seen in my life. Kudos to Sharon Denny for stepping in and gracefully telling the woman's story while comforting and showing friendship to the person.
One bit of humor from our patient breakout session. One FTD'er laughed about his wife finding his papers in the refrigerator. I disclosed last year a doc whose an excellent friend checked out my fridge for food and found a hard covered book in the freezer. Only in FTD World.
Many FTDpers have behavioral issues and don't do well in a mixed caregiver/patient group setting. It's also tough to coordinate because caregivers need there alone time to vent and get away. I had a caregiver who couldn't take it and left. We're still friends 3 years later with her helping me. If I could I would set up FTD Island for all FTD'ers to go to, but I don't play lotto. Maybe in the future as the FTD population grows, a special wing in Assisted Living Facilities for FTD'ers will be set up, but for now local get togethers would be helpful.
AFTD has set up a network of volunteer run caregiver support groups across North America, but it's extremely rare for those afflicted with FTD to get any support. These caregiver meetings should have a room adjacent for the FTD'ers to get together. This would not only free up caregivers from worrying about there loved ones, but there loved one's would be able to communicate with the only people that really understand or relate to them. A nearby pizza place of Assisted Living where an FTD'er is located would also be excellent locations. Of course this isn't for everyone, but many would be helped. The only way for this to happen would leadership from the top. FTD patient quality of life needs to take precedent. I'm hoping AFTD who has is stretched thin, will step up to the plate and heavily promote FTD'er get togehters. I'm always told to have patience. Change is slow. I've no patience, I have FTD. UCSF has support groups for caregivers and FTD'ers and a few progressive leaders have pushed this around the country. We need a big push. I wish I could do more to lead this charge, but I'm maxed out, with my capabilities slipping.
Last year I brought the AFTD "Food for Thought" program to my FTD Patient Support Group. People with FTD want to join the fight and this would help with awareness, raise funds for AFTD. This would also give those with the disease purpose. I was soon contacted by a fellow FTD'er. Probably the calmest and nicest guy afflicted with FTD. Also one of the smartest people on the planet. (for privacy reasons I won't mention his name or former occupation) He was told he could not participate after volunteering because FTD patients aren't welcome. Ripped the wind out of his sails and part of my heart out. I immediately contacted AFTD who told me they had no control over the Independents that run the programs. For those of you doing these programs I'm hoping in the future you will look at this with an open mind and heart. AFTD, though not in control can lead the charge to change.
FTD is a very lonely disease and there are few resources for those with the disease. Most with FTD have never a met a soul with it. Tough to slowly lose your mind alone.
This was a FTD conference, I have FTD, I so wish I could remember the conference itself more clearly but I am only remembering bits and pieces. What I remember the most is the people and there was a sense of like mindedness. The "professionals" interacted with the people with the disease. Outside of the scientific research, I truly believe the humanistic side to understanding is imperative to correct help. I am grateful for the opportunity to join with that kind of interaction. The most impact I came away from the conference was meeting the people I have come to know through Howard Glick's blog and support group. Their faces, stories, laughter and truth, will be forever etched in my mind
Thank you so much for all that you are doing..... It was wonderful to meet you at the conference.... I will always remember seeing you and having the feeling that I was truly going to meet the most impressive "rock star" ever..... You are amazing as you give so much to a community in the midst of confusion, pain and loss.
I co facilitate a caregiver support group in suburban Philadelphia and after meeting you and attending the conference, we have decided that we need to seriously talk about a group for those with FTD.. You are a true inspiration. Again, thanks and God bless you.
Howard Glick Observation
This is my 3rd FTD conference around the country and it's just white people that are there. Not one hispanic, african american or asian present. (maybe 1 or 2 in 3 years). There's a lot of theories why no people of color or minorities are not diagnosed with FTD. I've written about this before and will again. Truth is it's about who has better health insurance and money. PET scans and getting diagnosed with FTD is an expensive, long process. Those that have money and better health insurance get help. We need more awareness now. It's proven the Alzheimer's has a higher rate of diagnosis amongst African Americans than Caucasian. Logic dictates there would be an FTD population and I'm sure there is. Many out there are being misdiagnosed with a mental illness and what time they have left for them and there families is going down the drain.
AFTD is a small wonderful organizations with not much resources. Thank you AFTD for holding this conference, helping with travel grants and giving many with this disease hope of living a better quality of life with FTD. I look forward to AFTD Conference 2015 in San Diego.
Please visit Lorrie Cox's caregiver blog on the conference including slides of all the medical presentations. I've known Lorri for years and is one of the many that tell me I'm just like there husbands.