Sunday, September 9, 2012
FTD: Hate me, Love me
Had a visitor in from Tampa last week. Lady D has FTD and was coming in for medical tests and a visit with me. We met and are friends through the FTD patient support group I started. Lady D is a well accomplished Southern Belle and successful business lady, having been a senior VP for Wells Fargo. We spent the first half of the day after Lady D arrived at Mt. Sinai Hospital. That evening we had a wonderful Italian dinner and then went to see the Broadway show Spiderman.
The next day Lady D took me out to Keens Chophouse. This is where Babe Ruth and Teddy Roosevelt used to go for steaks. Lady D asked the waiter to bring me one of there finest steaks. Yes, I finished it. It was such a nice change from "Meals on Wheels" type meals and Pizza. Diana and I had fun in NY. I thank Lady D. for her incredible generosity and friendship.
I had only one incident while Lady D. was here. While walking in the street some smoke hit me and I jumped all over the guy saying out loud, "Your killing me and yourself smoking those cancer sticks". He fired back something I don't remember now. Lady D. quickly told me she was worried I was going to get killed. She suggested I say, "Have a nice day". I explained that I couldn't help myself. It was an impulsive aggressive reaction that I couldn't control. Plus, if I went around NYC shouting at people, "Have a nice day". That would surely get me killed. I work very hard at monitoring some of the FTD symptoms. I rarely make sexual jokes, say inappropriate sexual remarks or make a pass at anything that moves. I cut my cursing down to a bare minimum and curse less than the average New Yorker. I am proud of these accomplishments. I told Lady D. I've picked my battles and if I try to monitor and control everything I will totally burn out. She understood.
On the way home we passed the same smoker and he waved at me. Lady D looked at me. I explained that I've leveled my FTD smoking tirade on him many a time, while he's stood smoking and leaning on that mailbox. He's used to me. I'm a neighborhood institution.
Hate me, love me.
To read more about Lady D. She was featured in the Forbes FTD Patient Series:
Here is an FTD Symptom Chart. This was eerily reflective of me. According to the chart I'm at mid-stage now. I've read enough now to also know that each person is on their own path and symptoms from different stages can happen at any time. Even though my symptoms say I'm at mid-stage, I will consider myself in the early stage till I decide I'm not. If I was going to believe everything I read on FTD, I'd be dead instead of enjoying steak and typing. Mindset and attitude is so important when your sick with any disease.
On the chart shopping/meal prep jump out at me. I have my stable "God's Love we Deliver" meal at lunch but you'll find me wandering the streets of the neighborhood just about 7 nights a week in almost a crisis mode. It's the same unnerving experience every night. FTD is a bizarre disease and there's no easy answer. FTD defies logic and "make sense" ideas need not apply.
FTD is the Unexplainable and you can't explain the Unexplainable.
Someone wrote to me recently and told me she thinks she's ready for a nursing home. She's younger than me and just can't take all the "horror" of this disease. If someone would chronicalize my thoughts and actions for a week, I'd be on my way to Switzerland to be euthanized out of mercy.
Sometimes awareness with FTD is merciless.
On the flip side my life is the ultimate adventure. I am so happy to be alive and to be fighting on. In the 2 years since being diagnosed, I've met and had contact with some of the finest people humanity has to offer.
I've found that doing work to help others is by far the best gift you can give the human race and yourself.
Break::::: People are very, very kind. A woman who I didn't recognize just came up to me and handed me a Starbucks gift certificate. Her name is Teresa and she told me we've talked before. Thank you so much Teresa if your reading this. It's deeply appreciated.
Well it's 11:40am and this FTD'er is fried. I'm heading home.