Monday, March 18, 2013

The FTD Inconvenience

Went to the the supermarket where I walked out after ordering a sandwich a couple of weeks ago. The sandwich maker immediate approached me and told me she was very upset that I walked out while she was making it. I explained to her that I have FTD, a rare type of dementia and I do weird things and have strange behaviors. She gave me an understanding look and commented how she understood that I forgot and walked out and she got it. I told her no, I didn't forget, just didn't feel like it a minute after I ordered it and left. It's tough to explain the unexplainable and FTD is the unexplainable. I told her after I left the supermarket I stood outside for about 15 hungry and not able to figure out what to do. I didn't tell her it was raining/drizzling and I was getting wet but didn't care. Just standing there like I do almost every night somewhere on 187th Street like a freak of nature not knowing what to do.

Now is this a disastrous thing in my life. No, it's just a hiccup. Hey, I'm not starving and I've enough blubber on me to match a beached whale and keep me going for a decade or so. The food thing is an inconvenience of FTD which I'll deal with. 

Spent the last week in Tampa and it is definitely more affordable than NYC.  I was lucky enough to a member of my support group, Diana who also has FTD let me stay at her apartment and show me the town. I also met with 2 other group members and family members. It was wonderful to meet in person with people that share the same experiences of having FTD. There was a lot of laughing at our mutual FTDisms.

Of course there's no place like home and it's good to be back in NYC. I've excellent friends and support systems here. They don't want me to move and neither do I. Even got a note from one of my docs telling me she'd miss me and to stay put. Of course she doesn't want me to move because of that little complication called FTD. Over the next few months I will work with friends and try to find a solution to staying in my area. If not, well guess I'll be starting over in a new, warm city knowing virtually nobody. Many people have many suggestions, but if I can't stay here, I might as well be somewhere where I can enjoy warm weather year round and afford to live a decent lifestyle. As far as starting over, well me and my sidekick FTD will do what we have to do to survive and keep kicking ass.

Received a letter from CJ of the Florida Gulf coast Alzheimer's Association about the intent to start a EOD social program. A social program or support group for those with early onset dementia is crucial to help those with FTD or other Dementia's learn to live with purpose and happiness. Life isn't over when you learn you've FTD, you just need to adapt and live life differently. You can still have quite a few good years ahead of you.

There is no question that I'm doing well because of what I learned at Riverstone's "Memory Club." The Alzheimer's Assoc. and AFTD gave me grants to attend the support group and there has been nothing as valuable to me since learning I had FTD. With the growing dementia population, every city should have these groups. Social networking for those with dementia in Europe is now common at cafe's. The director of Memory Club approached me a few months ago about helping start a social program at a cafe here in NYC, but unfortunately I've been to consumed with my living situation. It is something that I'd like to get heavily involved in, in the near future.

Learning that you have dementia throws you into a state of shock. It's normal to just run from doctor to doctor and be totally consumed with your illness and mortality while at the same time driving everyone crazy around you. Some never get over it. If it was up to me, everyone diagnosed with FTD/dementia would enter a support group. Learning the invaluable tools to help live with dementia and the camaraderie of not being alone is invaluable. This would make life a lot easier for caregivers if there loved one gets into a groove early on with the disease. There's much support out there for caregivers, but it is extremely limited for patients. Hopefully this will change.



  1. thanks for the post. I like reading your blog. I always wonder what my brother is going through in this journey...although he's much further along with this illness, it helps me have an insight into his experience...thank you.

    1. Hi Mary,
      Your very welcome. Best of luck with your brother. Feel free to write me anytime if I can help you.

  2. I'm glad that you had a good trip, and also glad that you're going to try for a bit longer to find a solution that allows you to stay in NYC. I couldn't survive 24 hours there, but it's your home and the craziness doesn't seem to bother you. If I make an appointment with you for Jewish Family Services in your area, will you keep it?


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