The FTD Patient Group has 120+ members from 20+ countries and the group is one big family. Besides being a safe, comfortable place for those with FTD to go, many members from the group have also been or became strong community FTD advocates and participate in speaking engagements etc. with the AFTD Conferences, Alzheimers Assoc....
I have been honored and humbled to have created, grown and facilitate the "FTD Patient Support Group" and the sister group, "Ask the FTD'er?" support group for caregivers and medical researchers to ask questions of those with FTD. Both groups have upwards of 300+ people. I've had help from administrators I've added on since I created the groups in late 2011.
Since 2011, I've read and left comments for just about every post and thread written. Since the group is online and international, it runs 24hrs a day and there's always activity. Last year I stepped down because I could no longer could keep up, nor understand what I was reading. I was talked into staying on, but progression of FTD as well as persistent heart problems had me recently step down.
Whereas I was firmly diagnosed with FTD in 2011, I also wound up with cancer and a heart attack with 3 Stents placed all within two years. I live alone and manage my own care, which is difficult but doable and spend most of my alone. FTD isn't really one of those friend friendly diseases. Have moved 3 times in 3 years because of FTD judgment. One of my plethora of symptoms is never being able to figure out what to eat or what I can afford, so I found myself hungry every night and ordering pizza 5 nights a weeks or so. Not the smartest thing for someone with heart disease to do, but that's the way my FTD world rocks. I don't keep food in the refrigerator because I was getting sick eating food that was spoiled, ignoring it's state because I was hungry.
Started getting chest pains again several months ago. Last time I had a heart attack, I didn't find out till months after it happened. I know my cognitive skills have been declining so which is the lessor of two evils, slow FTD decline or quick heart attack. Plus going to a cardiologist is extra monies for co-pays and testing which I can't afford. Either way it getting impossible to continue leading the FTD Support Group and it was time to pass the gauntlet as to be sure of the groups continuance. Teresa Webb was the most capable person I know and she agreed to take over the group. I strongly suggested she put Sheryl Whitman in charge of the "Ask the FTD'er?" group, which I was happy to see she did. I also passed to her the contract and details for the restaurant I booked for the Annual Pre-AFTD Dinner for FTD'ers at Coopers Irish Pub in Minneapolis. Traveling has just become to difficult for me, plus I just can't afford any extra's in life. Last year I booked a plane ticket to the AFTD conference. Wound up driving, but at least I had foresight to taking out insurance for the plane ticket. Of course I couldn't do the paperwork so never got a refund. I've been lucky to have been going to the AFTD conferences since they've allowed those living with FTD to attend. Last year we 32 attend the FTD'er pre-conference dinner I've hosted each year for FTD'ers to celebrate life. I'm very happy the party will go on without me.
My retroeconomic situation has my savings down to a critical level, so I've decided to write a book. I've a pretty amazing story, so maybe if I can write and finish it, life will be a tad bit easier. I've 157 pages done.
Meanwhile I've severe dental issues so I've been going to Mexico for dental work. That or no front teeth. It's 75% cheaper and just can't afford it in the US. It's a 3 hr drive and last month on the way back I decided to have one of those 3 hr energy drinks. Bad move. I went from chest pains every day to one huge pain. Honestly thought I was going to die of a heart attack. Being on the interstate in the middle of the desert, I saw a road sign that alluding to "The Painted Desert". Okay, I'm going to die, it might as well be somewhere beautiful with a big FTD death grin on my face. Drove the 11 miles and arrived at what looked like nothing special. Took a couple of selfies and sent them to a bunch of people while waiting too die. Many bounced back. The pain then started subsiding and I received a text alluding to me being an idiot and I was hundreds of miles from the "Painted Desert". I was at "Painted Rock Pyrography". If I would've gone to meet my maker, he or she'd be laughing at what fool I was for dying and thinking I was somewhere I wasn't. Meanwhile I had two friends who I've know since I was 5 years old die. One was like a brother to me. They both died of heart attacks. Decided it's not time to check out and made an appt. to see a cardiologist. First time seeing one since I lived in NYC years ago.
I've dedicated my life to FTD awareness and advocacy. I live alone with no caregiver and manage my own care. I'm in the minus everything month. Social Security Disability only goes so far and there was no cost of living increase this year. For those that want to help there is a yellow donation button on right top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated: