Friday, December 28, 2012

FTD - Are we in Control

First time I've gone to Cafe Buunni in about a week. Incredible how noisy it is and there's no one here. Thank God for noise reduction headphones and music. They should be given out free to all FTD sufferers. Noises are amplified and with FTD you hear everything at once. If you go to a concert, it's like you can hear each individual instrument and voice. It's overstimulating and overwhelming just to be in society. I live in NYC which is far from the quietest place on the face of the earth.

A few weeks ago I went to the movies and saw the new James Bond movie. Funny, can't remember the movie or what it was about. but I can remember a couple of annoying people. I went to the early morning showing so it wouldn't be crowded and of course it's matinee prices. People were few and far between. I already had implanted in my head I wasn't going to say  a single word to anyone during the movie no matter what. Of course one seat in front of me to the right was Mr. Idiot who needed to check his texts every 5 or so minutes. After a few of these I was no longer watching the movie and figuring out my options. The most tempting was just slam the back of the chair with my foot since I couldn't say anything. Oh, BTW I try to maintain status quo in my life by using my Mantra, NAFW (not a Fu__ing word) in most public situations. If I'm in a constant flowing situation like in the streets or in a supermarket, I don't have a chance at not reacting or keeping my mouth shut to any situation that happens. But if sitting in Cafe Buunni or a movie theater where I can sit or have some focus, I usually don't say a word.

Back to Mr. Idiot and his texting. I tried redirecting my body so I wouldn't see the light. Failure. I was going to shout in his ear to shut off his F __ing cell phone, but NAFW kicked in. Luckily the stalemate ended and Mr. Idiot was saved by the kissing couple behind me. Hey when your young, movies are for making out. I only wished it was me. But, yes another big but, they stopped making out and started having a conversation in spanish. Not whispering like you would expect, but in normal conversation voice. Unfortunately I didn't have any James Bond weapons with me. NAFW. Mr Idiot again with the light from his cell phone. NAFW! Okay, I'm going home. I stood up and looked at Mr. Idiot and kissing couple. Fuck em. I just stood there looking around for an empty area devoid of human beings.  Kissing couple said something to me. I was blocking there view. Poor babies. I looked them and smiled. NAFW.  I had spotted an empty area but was in no rush. Maybe I should just stand there for the rest of the movie. Eh, off I went to the emptier section where I watched the rest of the movie in peace.

My kids are in now and we're heading to see a movie this morning. I do my best as a parent to teach them manners and install values in them. Of course when your divorced, part time teaching is tougher. Last night we ate at a restaurant and my daughter (19) was telling me how I was sort of "out there" tough she and my son (15) were young. Chelsea reminded me once years ago we went out to a nice restaurant  and we all left before the food arrived because neither of them had there napkins on there lap. Chelsea told me I was always a bit extreme, even before FTD. I looked at both kids and asked where there napkins were. They both smiled. Neatly placed on there laps. Point made.

I've always been a bit tough with out there techniques. It's helping me with my never-ending battle with FTD. Yes, I break down and throw a pan with eggs in the sink once in a while. Dealing and being aware of "end of life" reality and knowing your mind is decintergrating slowly with no chance of recovery gets intense. My union with FTD is one of constant battles and accommodation. I keep trying to live life with my head up and keep fighting on no matter what. 

So what are my New Years resolutions? To keep my attitude positive and not let FTD tear me down. I'll keep fighting to be aware of the symptoms and do what I can to manage them without beating myself up for things I can't control. Will I fall? Yes, but I'll get up. I'm planning to keep filming and keep myself out in my NYC world with my camera so one day people can see what the world of FTD is really like. I've some FTD awareness trips already planned, so I'll be taking "Howard's Brain" on the road. 2012 is almost over and it's been a good year. I'm alive, thinking, have good friends, my children and am living life. I've also seen the best humanity has had to offer with some incredibly generous people help me get through both spiritually and with other help. What more can you ask.


Thursday, December 20, 2012

FTD Routine Crash

Amazing how easy it is for everything to go Kerfunkle. The day started out okay with be having my morning tea and work at Cafe Buunni. Then went home and did the Christmas card thing.

Then came lunch. No problem. I went to the fridge and uh oh, no GLWD aluminum food containers. Forgot that I cancelled my meals on "wheels" type delivery Wednesday because I had a meeting. I have  nothing else in my fridge so I decided to head to the store. Well, I just got back after spending an hour walking in and out of 2 supermarkets and 4 restaurants. I deju vu'd to months ago before the charity food service started and I was right back there. Everything just went Kerfunkle. I couldn't decide what to eat or what to do. I vacantly stared at menus, looked at the same foods in the supermarket and couldn't make a decision. You would thing this FTD decision making problem might just give a little break. Nope, standing in the street, cold after my second round to the supermarkets I just stood there stifled and wishing I had my "Howard's Brain" camera to film this. I then realized I stood on this same street thinking the same exact thoughts last summer. Kefunkle.

I do have eggs in the fridge and haven't touched them in a while. A couple of weeks ago I went off the Atkins Diet after my my cardiologist and girlfriend beat me up. Since then I haven't eaten breakfast. Why? I can't decide between eggs and cheerios. Each morning I get up and go to the kitchen and can't decide what to do. Kerfunkle.

What part of my brain is disappearing to make me go through this. It's a good thing I'm losing my mind or I'd think I was in trouble. 

Now it's 1:30pm, I'm lightheaded and haven't eaten a thing yet today. At least I'm losing weight. I'll be fine. It's just another bump in the wonderful world of FTD. Actually, I couldn't figure out dinner last night, so my last meal was  pizza for lunch yesterday. Kerfunkle


Wednesday, December 12, 2012

FTD and Surviving the Holidays

It's taken me many years to learn how to handle holiday situations and I've certain strategies which now work. Whenever I go somewhere I need a "quiet escape room". Usually an hour or two is all I can take of all the noise, smiles, overstimulation and holiday cheer before I start unraveling. I start heading towards a negative place with inappropriate remarks and behaviors that I'm unaware of coming out. Rather than force whoever I went with to leave and be a total party pooper, I always make sure there's a quiet room I can escape to and lay down for however long it takes. I used to meditate, but that stopped some time ago.  People know I have FTD and it's never a problem finding a safe room. I'm happy to be around friends and it doesn't matter if I miss the meal, event or whatever. I might fall asleep or just lay there quietly.

I used to just run off if possible or make make some peoples lives miserable. No more, now I head to the quiet escape room and maybe I have some time left to hang out and really enjoy myself. No matter where I go now, there's always an escape plan. I do much better at planned events. Things like travel, airports conventions. Well there like a 2nd home to me. Earlier in the year I went to the AFTD conference and the whole thing was a pleasurable experience. Yes, I did take a break now and then and escape the hustle bustle, but it was an excellent conference.

As far as helping cooking and preparing. If I know in advance, I can work on preparing something, but even that has it's challenges. At Thanksgiving I was asked to bring ice and dinner rolls. Instead I offered to make salad. I was told to make salad for just 8-10 people. I made it for at least 30+. It blew my budget and I wound up giving much of it away. Next year I'll bring the ice. I just have to give up things I used to do and change my way of life to coexist both with FTD and the world around me. 

When you have a progressive disease like  FTD, things are going to keep changing and it's always expect the unexpected from yourself. I am lowering the expectations of myself and letting people know to expect less of me. That's extremely difficult  constantly giving up cooking, driving, helping with kids etc. for those of us aware with FTD. If we don't give it and screw up, we usually don't care and that frustrates and makes angry the people around us. If your a caregiver you need to realize if you get one good hour at a holiday situation, that's a good thing. Take and appreciate that. Don't dwell over years past. Enjoy the moment and wreck your normal brain over what no one can control.

Traveling with FTD for me is easy now. My Mantra NAFW - Not a F--ing Word has saved me many a time. I know longer say a word at airport security, hotels etc. After 120 flights a year and over a million miles, I'm on cruise control when I travel. It's extremely easy to get out of control with FTD. One wrong question and we're in someones face. Airports and hotels are perfect places for nonsensical questions that get a normal person crazy, never mind an FTD'er. My advice to caregivers. Drill NAFW into your loved ones head long before they travel. NAFW means ignore everything and just comply, now matter how stupid the person is in front of you.

Just try and enjoy the holidays for what they are now and don't push yourself, caregiver or patient to make it like past years. A couple of great hours is better than despair. Make the best of every moment.

I spoke with someone last week for 45 minutes who has FTD. He was a great guy who is still enjoying life. He knew he had FTD, but couldn't tell anything was wrong with him. To him he's fine, even though he knew there was something wrong because everyone around him keeps telling him that. His behavior was off, he new it but he's always been on the wild side. He was sad he could no longer work or do what he was doing, but he was determined to enjoy life and keep moving on. Attitude and mindset is everything. Even when your slowly losing your mind.

The AFTD 2013 conference was just announced. It will be in Salt Lake City April 12th. Patients are invited. Last year was the first year AFTD had patients and it went really well. This year there will be much more time for FTD patients to hang together, enjoy themselves and discuss ways to make life better and easier. There will be more to come. 


Thursday, December 6, 2012

FTD and Morning Routine

Starting the morning routine is the most important part of the day. If I don't start right the whole day comes apart at the FTD seams. I wake up at about 5am. I've breakfast between 5:30 - 6:00am,  shower, shave etc, watch "Morning Joe" news and am out the door slightly before 7am. It's then onto Cafe Bunni, where I'm productive with my blog and work anywhere from 7:00 to 10:00am on average.

This routine is done 7 days a weeks now. It goes smooth most of the time, with me having specific times to make sure I'm up and getting things done. Everything's a constant at that time of day. I don't really care for weekends because my morning news show isn't on at 5:30am. If we could only eliminate weekends, my FTD unionized world would be much tighter. I don't think the public would mind going on a 7 day work week for my convenience. 

Of course my FTD world isn't always perfect and morning routine, though mostly stable can easily be shot to hell. Now that I'm sitting here and actually thinking about it, it's not only disturbing how regimented I am, it's sick. Good thing I have FTD or I'd seriously have to consider seeing a shrink. Breakfast has to be eaten by 5:30am. The MSNBC news program starts at 5:30, so I need to be back in my bedroom by then or things start getting off kilter. The regular 5am news is usually on with a commercial break about 5:26am, so that's more than enough time to eat a hard boiled egg. If I get an earlier start, I might makes eggs over over easy. I only cook if I have nothing negative on my mind or have zero pressure. I can lose it easy. A flipped over broken yoke might mean the pan thrown against the wall or sink. A hard boiled egg shell that sticks to the egg means the whole egg getting crushed in my hand and thrown in the garbage. If things don't go perfectly, FTD pushes me aside and takes over. Even when I break two eggs into a cup, if one one yolk breaks, into the sink or garbage it goes. Probably once of twice a week breakfast doesn't go perfectly. I'll sometimes go through 2-3 hard boiled eggs before I eat one. If I get to the news and it's already started, it no big deal. Vitamins and pills downed at this point. 

Next comes the flossing and brushing routine. I wait for a the commercial to come on, grab some floss and floss while watching the news. I continue on to brushing the same exact way, running back to the bathroom to spit out toothpaste. Listerine and I'm done. I used to brush and floss twice a day all of my life, but that stopped about a year ago and I've been unsuccessful in keeping that piece of hygiene on track. I'm suppose to care and I do, but I don't. A few more quotes like that and I can run for President in 2016.

Forgot to mention that my laptop is with me on my bed from the moment I wake up and I'm constantly going back and forth to it.

I watch "Morning Joe" from 6:00- till I head to Cafe Buunni about 7am. Of course I squeeze in a shower, shave during a commercial break. I use one of the old fashioned grandfather double sided razors and usually cut myself up a couple of times a week. People ask me why I don't switch. $7 for two year supply of a blades on Amazon. I don't mind that battered look either.

Clothes, well I wear the same pair of jeans all the time. I used to do the wash every Saturday, but that stopped long ago. I get an occasional comment about my appearance or hygiene, but I'm far from out of control. 

That's my morning routine when nothing goes wrong. Things get a bit dicey when things do go wrong. If I have trouble sleeping and wake up past 6:30am or something distracts me, I might get it together and go through a quick routine and get out the door shortly after 7am. If I wake past 7:30am, chances are I won't make it out the door to the following day. In fact, I might not even make it out of bed. Everything just collapses, breakfast, brushing teeth, shower, shave etc. don't get done and I don't even think about it. When I try to get going, it just doesn't happen. The longer I get distracted, the greater the chance I'll head toward's an FTD frozen place. Couldn't care less. This has gone on for minutes or days at a time before I pull myself together. I'm not sad or depressed, I'm perfectly happy and comfortable doing nothing. Then comes the reality that I can't let FTD start to dig in or I may never be able to escape. I need to push myself back into my routine. If I go have tea 7 days a week from 7-10am and never leave the house besides that, so be it. I'm fighting this thing alone, getting out and adding purpose to my life by sitting here writing and doing other work to further awareness of FTD. I do incorporate other activities in my life, but there becoming few and far between. Hey, I have purpose and I'm happy with what I'm doing. 

Homer, AK 2004  
Taken while on work assignment. I had a life then and I have a life now. I made the best of it then, I'll make the best of it now.

I was invited to participate in an FTD symposium in Arizona. Some have advised me I can't. Right, never believed in the word can't

One day this blog will turn to gibberish, but no one can ever say I didn't life to it's fullest. Time to head to the Cardiologist this morning and make sure this heart of mine is set to continue this journey. 

*BTW - Had the superintendent of my building hang up my dry/erase calendar board. I filled out a week ago. Haven't looked at it since. Shwiah, Shwiah - Slowly, slowly in English.


Monday, December 3, 2012

FTD and Overstimulation

This has been a wild journey with FTD for the last 8 years, but I think I'm finally finding some peace.  The last few weeks or month have been going really well. I've found less is more. I've accepted I need to do less and am functioning better for it. I used to think that I needed to somehow find a way to stay active and try to live a normal life with FTD, but that's not possible. What I found is FTD has a life of it's own and there needs to be a union of the two of us, instead of  a constant battle over control. Over the last couple of years I've tried to get my FTD ass out into an overstimulated NYC world. I've desperately been seeking ways to fit in and each futile effort had me adjusting and readjusting to find a path to happiness.

A few weeks ago I turned around on the subway while heading to a store. I realized I kept going to the same store for over a year and was overstimulated by the time I would get there. I would always come home from the two hour trip anxious, tired and empty handed. I would give myself about 10-25 minutes before I would abandon ship. Crowds, lighting, noise etc. would prove to much for me. Everything was amplified and I was aware of everything happening at once and overloaded. (Right now I'm at Cafe Bunni and there's this plump woman standing 2 inches from me laughing and giggling about some nonsense. She's been at this for about 10 minutes and I'm using my Mantra, (NAFW) Not a Fu__ing Word). On the verge of me leaving, she sat down to eat her giant croissant and coffee her husband brought her). Thank f God.  Someone bumping into me would result in a cocky, if not inappropriate response. Someone trying to hand me a flyer would get interrogated to why they were destroying the planets trees, smoke in my face would have me tell the person if they wanted to die they should just commit suicide and not take others with them. 

I got home and realized that I'm at the point my routine needs to stay in tact in the morning with nothing planned in advance. If something needed to be done, it was first thing in the morning when I was more in tact. Of course I need and want to go out with friends, but if I plan these things well in advance and have an escape route everything usually turns out okay.

I also realized that I wasn't happy at Starbucks anymore. To noisy and not comfortable. Many of the regulars never returned since the renovation. It just wasn't the same. For a long time  I tried to put a square plug into a round hole, but it wasn't working. I slowly transitioned to Cafe Bunni having my $1.50 cup of tea each day. I've noise reduction headphones so when it gets noisy I stay in my own world with my music. They don't blast the music like McBucks does. At McBucks, they were manic with the volume of the music and asking them to lower it a bit, became a crime against humanity. At cafe Buunni it's at least background music. Noise suppression is extremely important to someone with FTD. Every morning my Routine takes me out of the apartment for a few hours to have my $1.50 cup of tea and hang out in the outside world. Then it's back home till the next day, unless I have a specific plans or I feel like going out. Everything is finding a balance to live in this world with FTD. You need to work hard to find that balance. It just doesn't magically happen. It's amazing how a good few hours set up the rest of the day. 

The following quote is from a fellow FTD patient:
"As out brains develop we learn to filter out sounds. Our home has a wall clock that chimes on the quarter, half and hours, but most of the time we never "hear" it. Same for people who live next to railroad tracks or emergency rooms. Those filters are degenerating with the disease. If my wife drops something that generates a loud crashing sound, I involuntarily jump out of my skin even if I am seeing the objects fall. Learned behaviors like inhibitions rely on filters as well. When disease destroys those particular cells, we act "uncivilized" with bad manners, cutting remarks, or just say the obvious (you must have had a miserable childhood to become such an a**hole), no matter how uncomfortable to others. Sometimes that can be so refreshing." 

Things are always more comfortable at home and we get to stay away from the overstimulation of the outside world. It's hard being around people and keeping up with the world, especially since we're in a different place. I have behavioral issues which affect me and others so there's a need to be home in a serene, safe environment where I stay out of trouble. Even though it doesn't bother me and I'm unaware when I affect others and couldn't care less when I say things, later on I realize how much I'm a pariah. 

I used to force myself to go out and socialize. This caused a lot of confusion and anxiety. Now I'm finding a balance being perfectly happy hanging at home, as long as I'm productive in the mornings. I need to be productive with purpose. Otherwise for me, there's no reason to be........

It's getting close to 9:30am and I'm ready to publish and head home. I'm still being productive and living life with purpose. 


Saturday, December 1, 2012

FTD Support Groups and Medical Centers

There are few FTD specialists in the country, especially if your outside a major metropolitan area. I'm attaching links to the U.S. and Canadian AFTD pages which has a maps to show you where to find help. You can choose either  Medical Centers which have support for FTD or FTD Support Groups for caregivers. 

Please click on the following links:

AFTD - Canadian FTD Medical Centers & Support Groups

AFTD has a helpline 866-507-7222 for any questions you might have about resources and support.

In Australia, the Dementia Behavior Management Advisory Service 1800 699 799 is available 24 hrs. a day for patients and caregivers.
The Australian National Dementia Helpline 
1800 100 500
8:30 - 4:30pm weekdays.

If you can't find a doctor familiar with FTD in your area, interview the local doctors and find someone willing to learn about FTD. If there no support groups for caregivers in the AFTD list, call the local Alzheimer's Association. Your local Alzheimer's association might also have, or know of a support group that an FTD patient can attend. 

If there's no support group in your area, well someone needs to start one. AFTD will help you organize starting one in your area. I wouldn't be writing or would've survived without my support group, Riverstone's Memory Club. It gave me the tools to exist with FTD.

If there are no face to face support groups, there are online groups. 

For caregivers, the FTD Support Forum is a large online group.

FTD Support Forum

There are many FTD and FTD/Dementia Facebook support groups you can join. This is the fastest growing segment of support.  Just put the name in the Facebook search engine. There are also closed private groups.

Facebook is easy to join and takes 5 minutes. If you join, that doesn't mean your a yuppy or your life will change forever. Facebook has gone beyond just being a place for kids and now is a source for meeting others in your position. 

Facebook  Support Groups
Association for Frontotemporal Degeneration
Defeat Dementia
Dementia Aware
For the Kids of Parents with FTD / Early onset dementia
Frontal Lobe Dementia

Closed  Facebook Groups 
Primary Progressive Aphasia Support Group - For patients, relatives, friends of PPA Patients. Medical personal welcome.
Natasha Young:

FTD Patient Support Group - 
For firmly diagnosed FTD Patients
Contact Howard Glick:

Early Stage Alzheimer's / dementia support group - For firmly diagnosed Dementia Patients
Contact: John Sandblom:

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