Contacted my daughter Chelsea a few days ago. She's a sophomore at Washington State University. A straight "A" student. Doesn't drink or party. Both my kids are doing amazingly well and I'm so proud of them, considering growing up with FTD dad. Told Chelsea I need to give up driving and will giving her my car at the end of the Arizona summer. I'd give up driving now, but we're facing the Arizona summer with temperatures routinely over 110 degrees.
I've had people drive with me recently and everyone agrees I'm an excellent driver. To the naked eye I drive fine. People also say they can't tell I'm sick, that I look and act fine. All FTD'ers are familiar with people questioning whether we are sick or not. We are driven crazy that we are so sick, dying of a progressive terminal brain disease and people question or make light of it. Yet, when it comes to driving the same logic doesn't apply. Many FTD'ers have no awareness or insight that there sick and have to have there license pulled. Some states revoke your license immediately upon FTD diagnosis. Many have some awareness won't give up there license do to independence, logistical needs, work, survival or simple human nature. I refuse to be judge or jury on anyone and there decision. I do know what FTD'ers are going through. I've had FTD for 10 years and have been driving. I know it's the right and responsible decision for me no matter how drastic or inconvenient it will be to my life.
(Thinking about a moped or motorcycle?)
I play the same mind fucking games all of FTD'ers do. Avoid the highway. No long trips. Cut back my driving. Drive only where I'm familiar with. Drive only a few miles a day and just to the store or restaurant. The illusion of safety and doing the right thing. Then there's reality. I've FTD, it's getting worse and I'm going to need to stop driving. I follow traffic laws like any other citizen. Have my Mini Cooper and have never been cited or pulled over. No fender benders. Have killed numerous insects, though this can never be proven do to window washer efficiency.
Six months ago I moved deciding I had to leave NYC. Had to move from friends and support systems. Was told I wasn't allowed to move nor drive. I refuse to live my life in fear. Fired my Power of Attorney, moved, upon landing in Arizona went directly from the airport to the car dealership. There is no perfect place to live life with FTD. In fact life sucks with FTD everywhere, but as far as I'm concerned it's a good "sucks" here and I'll make it a good sucks anywhere. NYC is not a place one should live with FTD. Another topic for another time. What I can say is I've absolutely loved my 6 months of Mini Cooper driving. I love sitting on my balcony enjoying the 70 -80 degree weather.
What is life without a car for Howard FTD. Closest grocery store is over a mile away. No family, no friends, no one with a car. Remember I'm the neighborhood nut. So how do I get to docs etc? Public transportation is very limited here, but I'll do what I can and bike it. I don't keep food at home and can't decide what to eat when I'm out. I now regularly choke on liquids on phlegm and liquids. Besides morning in Starbucks I avoid people because of my behavior. Assisted Living? No way. I'm not the Assisted Living type. I'm extremely well educated on AL, have visited many and have many FTD friends there. Not for me. I'm not prepared to rot away. Dying from FTD is horrific. If you don't think I'm not looking at dying with dignity, your out of your fucking mind.
Flying to NYC next week for the AFTD Conference. Will be hosting a breakout session with 23 FTD'ers on "How to make a better life after diagnosed" and addressing the General Assembly with question/answers. Am so excited. There will also be some of the top FTD specializing neurologists and medical personal in the country there. Many of my FTD compatriots from my support group, caregivers I know. Close to 300 people attending.
Will be happy to see Dr. Ted Huey from Columbia presenting. He is one of the top FTD specializing neurologists/neuropsychiatrists in the world. I met Dr. Ted Huey when first diagnosed and he got me off Aricept, which had horrible aggressive side effects. Don't know if he'll remember me, but I'm forever grateful.