Friday, April 26, 2013

FTD - A Howard Tune Up

It's been a while. People frequently comment how I handle this blog with FTD. It's hard and gets harder all the time. Consider this a tune up to get back on track. Trying to keep in a routine and get along in life is a daunting task, but I'm doing the best I can. Had two people send me "get off your ass and get out" messages this morning. I don't think I've left the apartment in 2-3 days. Of course I get to Cafe Bunni and there's a babbling, crying baby right behind me. NAFW (not a fucking word) Kid and mom left after 5 min. Guess there is a God.

The AFTD conference was absolutely wonderful. Better than last year. There were 16 patients and about 200 people there total. It was good to see people I knew from last year including patients. Just about all the patients never had seen an FTD'er before and many were still in shock over the diagnosis stage. Each one of us is totally different and there is no crystal ball on the journey each of us is to take.  I know my FTD progression is going slow and it was good to see others with the same slow progression as me. No question that we gage each other and take a deep breath. When I was officially diagnosed about 3 years ago after 6 years of misdiagnosis, they told me to make my "end of life" plans. I had 2-3 years left. 2-10 average 6 years alive. It seems each year they lengthen the possible lifespan. Last year it was changed to 2-13 years and then a few months ago 2-20+ years. Why the changes? Early detection with better brain imaging and detection techniques. That and the medical community still really is a novice when it comes to many diseases, especially rare brain diseases like FTD.

One of my funniest moments at the conference was someone who introduced me as an FTD Recipient. WTF, I was ready for the Congressional "Medal of Honor" to placed around my neck. I would rather be introduced as one of our "Bad Lottery Ticket" winners. 

So I guess I'm not dead yet and I don't plan on going anywhere soon. Spoke to a friend the other day who loves me and told me I need to be cautious in life with the time I have left. I asked him if I looked like I was going to die in the next year? 2 years? 3-4? He said no but as everyone in FTD world knows,  I can wind up in a nursing home in 3+ months with the unpredictable progression of FTD. Hell of a way to live your life. While we were having this serious conversation I tried explaining something to him that made total sense to me. It sounded great and he was paying total attention to me. Somehow in the middle of it I got totally lost without realizing it. I finished up. He sat there staring at me deep in thought. Then he said what I just said made absolutely no sense. I thought about it and realized he was totally right and I couldn't even explain where I was going with what I was saying. I was saying it with such conviction most people would have just nodded in agreement trying to figure out what I was saying and thinking it was them not on the ball. FTD. We laughed.

I explained to him I lose my trend of thought mid-conversation and it could lead somewhere without me realizing it. It freaked him out because I make so much sense most of the time. I told him how many caregivers take there loved ones to doctors and leave with the docs thinking there's nothing wrong with the (FTD'er) and offering to prescribe meds or a shrink to the caregiver. This happens more often than anyone would believe and is a scary thing. My friend also commented what a mess my place is. I tried to explain how difficult it is to motivate and get things done. He told me just to do it and get it done. Yea, he gets FTD :-) He also noticed my disgusting refrigerator was totally empty. I have milk for coffee in it. Of course like all FTD'ers we seem so normal all everyone says it we'll be there to support you when you need it. He never asked if I needed help cleaning or help figuring out how to get food in my fridge and how to solve my FTD symptom problems. It would be nice to have things a little easier, but that just doesn't seem to be the path I'm on.

Got into a car with someone else who told me he'll be there for me when I really need it. I looked at him  and asked if he was going to clean me up when I was pissing and shitting in my pants 10 times a day. He looked at me vacantly. Of course I'll have home health aide then or be put in a facility. Told him now is when I need the help. Might as well be knocking my head against the wall. 

I've many loving, wonderful people around me but people just don't know what to do with an FTD'er. It's an occupational FTD hazard. Frustrating for them and me. Just know I love all of you out there. I apologize to the person who had to stop me twice from picking my teeth with my fingernail and wiping it on her pants. Woke up thinking about that last night and how bizarre it was. Amazing how she took it in stride.

Forgot where I'm going with this blog, but it feels really good to be writing after a long absence. All I know is I feel I've got a few good years left at minimum. I'm actually hoping to make the 20 year mark. I know one person who has FTD 26 years. 

Things are rougher but I'm hanging in there and need to find a way to improve my life and become happier and live life. I refuse to sit around living my life in fear of an FTD decline. I need to stay productive with purpose and happiness. For me the future is now and I will find a way to make my life a bit easier.

For all of you that say I can't, I can and will. FTD can hang out, but Howard rules.


* I will be going into more depth about the AFTD conference in my next blog. This will include an exciting Phase III clinical trial for a drug that intends to stop the progression of FTD in bvFTD patients. I promise to have that out by Monday.