Thursday, March 28, 2013

Dr. Jekyll and Mr. FTD

Was just standing and filming on the main drag (187th) yesterday when I was approached by a familiar face. He asked if I was "lost," I smiled, laughed and told him no. It's the street I'm known to wander and hang around. It took me a little while to remember Emile's name, but I've see him around on and off for decades and he knew my situation. Emile is someone I rarely see but know I can trust. That's something I've here in this neighborhood of New York. I was born and raised here and back and forth all my life. There's something about walking around a NYC neighborhood and not being able to walk 100 feet without nodding to a familiar face you've known forever, even if you don't know there name. You know them as kids, then adults with there own children and finally now some of them are becoming grandparents. 

I'll miss this neighborhood when I move. You build a whole relationship with the neighborhood. People envision NYC as totally cold and hard, but it's not. One of my docs, whose a good friend has threatened in the past to come to my apt door and drag me to her office if I don't make an appt. She still writes and calls for me to come in and never charges me. This is the real NYC that no one knows unless they live it. 

Since I've Goodyear Blimped out with my body, I decided to fast for a day or two. This way I would shrink my stomach and then start consuming smaller, healthier meals like salads. Hey, worked great. Fasted for a day and a half, then had a small salad for lunch. Last night uncontrollable carb cravings came on hard for Pizza/Pasta etc.. I drank about 5 glasses of water to help squash the hunger. Didn't work and about 10pm the Pizza delivery guy was knocking at my door with a Large pie. Hey, my stomach must've shrunk because I only ate 3 of the 6 slices. Normally I devour the whole thing. That of course led me to my smoke detector going off this morning. Got hungry this morning so threw the pizza slices in the oven. Forgot about it since I usually don't eat in the morning. While in the shower the smoke detector went off making enough noise to wake the dead. I use my smoke detector as a timer. When it goes off I know my food is ready. I was careful getting out of the shower. I usually run to the kitchen when the smoke detector goes off. I keep it on the kitchen table so it's easy to get to and disable.  Lost my balance a couple of days ago and feel out of the shower/bath. Since I don't wear a "Help, I've Fallen and Can't Get Up" pendents, I got out slowly before sprinting to the kitchen. I used to wear one of those Medic Alert bracelets but it interfered with sex, so I removed it. 

Not easy being alone with FTD. Maybe I should move to Utah and convert to Mormonism. Mormons like Jews. We're both outcasts. I've known many Mormons in my life and they are some of the finest people I've met and great partners/caregivers. A couple of wives would suit me well. Especially with this FTD teenage libido thing going. Hey, any Mormons reading this don't take offense. It's just me and I'm me. Maybe I'll come home from the AFTD conference in Salt Lake City with some wives or just stay in Utah. Need to do something in life where I've just a little help so I can devote time to some real FTD advocacy. Even with half a brain I know I can accomplish much given the opportunity.

As you can tell, it's afternoon and I'm losing it. I never write after mornings or do anything. Sort of a Dr. Jekyll and Mr. FTD thing. I start getting tired and awareness and self control disappear. I'm real fun to hang out with. Never know what I'll say or do. People around me are usually hysterical laughing or chasing me down the street wanting to kill me.

At Cafe Buunni drinking simple brewed coffee. Hopefully I won't get kicked out for staring at every butt that walks by. Just realized and became aware that I've been doing that for a while. Hey, at least there are nice butts walking by. No free refills here, so no 2nd cup. Outa here soon.

*****Just told the guy they need to do something about refills. He said there isn't a policy and would give me a free refill. Ah, more free butt time.


Saturday, March 23, 2013

Frontotemporal Dementia Documentary - "It Is What It Is"

The award winning Joe Becker FTD short documentary, "It Is What It Is" has now been released in hi definition by AFTD through youtube. This powerful 15 minute documentary (plus 3 minute intro) shows you the harrowing effect FTD has on 4 different families. 

(18 minutes)

Joe Becker is currently working with me on a 2nd FTD documentary, "Howard's Brain" which is following my life living alone as FTD progresses. Howard's Brain is an ongoing project and will be a full length documentary. Please watch the 6 minute trailer.
(6 minutes)

Joe Becker is a seasoned Hollywood filmmaker whose numerous credits include the award winning hit  TV series "West Wing." 


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.


Friday, March 1, 2013

FTD and Brain Donation

Received my GLWD - God's Love We Deliver for the week on Wednesday. I switched to Vegetarian to try to be a bit healthy. My delivery came and they brought 7 meals of Mac n Cheese for the week. I don't even like mac n cheese. To bad they forgot the cyanide milkshake. 

Needless to say, I went out hungry to get a sandwich at the local supermarket. I ordered an unhealthy sandwich. As they were making it I had a change of heart and walked out. They were busy so maybe they won't remember me. I then went to the other supermarket and bought a box of Mallomars and Vanilla Wafers. Yep, finished both. 

Next day I made a box of pasta and threw on cream cheese and butter. Yep, finished the whole thing. So now I'm sitting here in walrus mode feeling like a beached whale.

This does have a happy ending. Called up GLWD a few minutes ago and there modifying my diet. Fish, chicken and vegetarian. No meat or pork. I tell ya, no matter how much I try it's hard dealing with all this shit alone.

Went to my neurologist at Columbia University Medical Center. I love Dr. Karen Bell, she's wonderful. In fact, I like all my docs. If I don't like them and aren't happy with them, I fire there asses. Can't understand people that complain about there docs being incompetent or them not liking them. When your sick, docs are the most important people in your lives. It's simple, you don't like them, fire them. I spent a lot of time meeting and interviewing docs. Yes, they go through job interviews with this oddball FTD'er. When I found the ones I liked, I cross referenced there insurances. Found out which one they took and switched my insurance. Now I've got the best docs I could find. Competent and I like them. So now that I'm all set with medical help, I'm probably moving to Tampa. Shit happens.

Spoke to Dr. Bell about my lip tremor and losing words. Nothing can be done at this point. If it gets real bad in the future, then it can be addressed. I'm glad. I'm a drug free FTD'er and I want to stay that way for as long as possible. Dr. Bell, whose opinion I value wasn't to happy about me moving and leaving my friends and support. 

While at Columbia, I completed all the paperwork for brain donation. Told them they could take out whats not being used now with an ice cream scooper. They declined and deferred to autopsy after death. To bad, I was hoping to lose a bit of weight with some unused dead brain cells removed. I just can't catch a break. Good thing is if I move to Tampa, they'll take care of slicing, dicing and shipping. Columbia is a great.

Next Thursday it's onto Tampa. Never been there before. My friend Diana is going to help me out and show me the town. Have to move somewhere. It's warm and has a bay/beach. Not a bad place to medically retire. 

What do I want in life? Time and a companion. Seems like FTD is progressing slowly enough to give me time to get substantial work done. A companion, not a caregiver to help me and put up with my oddball, strange FTD behavior. Hopefully I won't wind up all alone in Tampa.

I can only control so much and I'm aware that I'm unaware of much that happens. That being said, I do much better in public and around when I'm with someone and not alone. 

Haven't been happy in a while. Maybe I'll find some happiness in Tampa.