Friday, February 17, 2012

Lunch with a fellow FTD'er

It took 20 months, but I finally met someone else with FTD.

One of my struggles with FTD is never having any contact with anyone else that suffers from FTD. Anyone who has FTD knows the isolation and day to day struggles we go through while slowly losing our minds.

Being alone with FTD is difficult. 
I struggle all the time to make my life easier. 
I will refine that last statement. 
I'm doing fine and work extremely hard on my mindset and attitude to keep it that way. 

Diana flew up to NYC from Tampa for the day. She had a doctors appointment and we were to meet for lunch. We hit it off from the moment we met. It became very clear that we were mirror images of ourselves.

Diana took me to an Italian restaurant for lunch. Okay, put two FTD'ers together for lunch and of course the police will be involved, we'll be eating food off other people plates and making a total scene.

Sorry, no such luck. These two FTD Patient Support Group members who have no caregivers, bust there butts to maintain a normal as possible life against all odds.

Diana is a wonderful person who was well accomplished as a Senior VP at Wells Fargo Investments. She is funny, direct and very FTD'ish. She has a no shit, take charge attitude like me. We both have traveled extensively and Diane has absolutely no plans on giving up on life and will live it to the end like me. She is heading early this summer to the Amazon for an adventurous vacation.Diana has a wonderful family history which extends back to the Mayflower.

We we're both self absorbed, listening but cutting each other off to get a word in. 

Amazing how we've similar day to day disabling struggles do. We talked about handling the basics in life and what a chore it's become. Basic checking account. I never had a chance to tell Diana my struggles, so here we go. I can't even balance a checkbook or write checks. This has gone on for years. Of course I don't have money to create many bills but of course there some. I'm lucky to have a Chase branch right next to me whose employees he me write checks when I need to pay bills. The employees of Chase are wonderful and are always willing to help me. There familiar with my FTD difficulties.

Diana was lucky enough to get a more recent diagnosis of FTD. A few years and clearer diagnostic tools make a world of difference in learning and making one's fate. She has serious health issues, but refuses to let that impede her life. Diana is a go getter and I can't tell you how refreshing it was to spend time with her.

We both even have Unum Long Term Disability plans. Fortunately for her, Diana didn't get misdiagnosed for years and Unum recognizes she has FTD and gives her benefits she's entitled to. My diagnosis is now crystal clear with plenty of medical facts backing it. We even have brain scans showing FTD progression over the years. UNUM is of course a "for profit" company that is screwing me because it's easy to turn a blind eye on someone whose sick with terminal illness that didn't have a clear diagnosis from the outset.

I will be doing addressing UNUM's disgusting track record denying legitimately disabled people there benefits as well as US government class action suits as soon as I get the go ahead from my lawyer.

Diana was so helpful trying to help me with future plans getting organized when I somehow start receiving funds from one of the many ventures I'm into. For me, it's difficult to see. Yesterday I was happy to see NY State was kind enough to give me $19 for the next month or 63 cents a day for food stamps. 

Diana was kind enough to offer me assistance numerous times. I told her what I tell everyone. I appreciate the offer. Thank you, but I want for nothing. My ex-partner Tamara has been helping me and others assist me in different ways. 

I live a very limited lifestyle, but so what. I have a life. It's a good life that I'm proud of. Is it one I would choose, no but it is what it is and I'll make the most of it.

People constantly ask me what are my future plans with regard to long term care. How can I even think about that when I'm barely making it financially. My answer is sooner of later they'll scrape me off my apartment floor. 

It was so nice to have lunch with Diana and know  we can count on each other for friendship. I'm looking forward to seeing her in June when she comes back to NYC. 

Diana & I know and get each other.

The FTD Patient Support Group is filled with people like Diana that will take the hand life has given them and will keep going. Many of us in the group are alone and are making it on sheer guts and determination. This isn't something new to us. This is how we've always lived our lives and will continue to carry on.

I look forward to meeting other members of the group. 



  1. I was recently diagnosed with FTD after a two year struggle. I just turned 50 and have not met anyone else with FTD but I am hoping to next week

    1. Sorry to hear about your diagnosis. Your welcome to join the Facebook FTD Patient Support Group. We have 34 members. It' a private, confidential group.

      Feel free to email me for information at


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