Friday, February 22, 2013

FTD - I care, but don't care

It's 4:42am. I'm up in a panic state. I'm not sure how I can make this move. My life is so warped and I'm having such difficulties. I almost never leave my apartment anymore. When I do it's sometimes to have a cup of coffee, more likely it's just to walk out to the local stores to try and figure out something to eat. I walk in circles and just stand not being able to decide what to do. Then I go home usually empty handed, distressed. I hate living this way. I have a charity food service now. I won't have that when I move. Opening aluminum foil containers for food gets tiring. I'm thankful for the service, but each day seems to get rougher.

I'm no longer taking my heart meds on a regular basis. I just don't care and am hoping this nightmare will end. I'm in survival mode all the time and rarely enjoy life. My mind is slowly dying and there's no way to change it. I feel exactly the same as years ago, but then I think of how I live life each day. This isn't life I'm living. It's just existing while compensating daily for losses in forgetting how to basically exist.

I constantly hear from caregivers that there is no reprieve for them. I feel for them and realize there is no  reprieve for me from myself. Am I sitting here in the middle of the night feeling sorry for myself. Yes, I have my moments also. I can't remember a day when I haven't wished for death. Yet, I fight on and I try to keep myself from going into deep depression.

I keep trying to push my mindset and attitude to a positive place that it will be a new beginning in Florida and will work out. Then again, each day is such a struggle alone here in NYC. I'm barely making it here and keeping myself together. I don't trust myself and my actions so I isolate myself most of the time. I'm good around people in short spurts, but try to refrain from to much communal activity. Never mind saying and doing strange things, my thought process is totally screwed up all the time. I can rarely think soundly on a consistent basis. I'm not even sure what I'm thinking and where my thoughts are are coming from a good deal of the time.

I wrote last week I spend hours and hours at home just staring quietly and not doing anything. The TV is on, but I rarely watch it. Someone wrote to me that her husband does that and what am I thinking during those times. I'm not really sure. Seems like I'm just staring into space and not thinking anything. If I am thinking anything, it's possible it's scrambled or I forgot soon after. It's almost like falling into a meditative state or asleep while being awake. Once in a while I realize the movie I was watching on Netflix is over and I missed most of, sometimes all of the movie. Where was I? Don't know.

My most cognizant moments are when I'm writing. I try to think through moving, not moving or how I can continue. Trouble is my desire to continue is slowly dissipating with my inability to use my brain.

If reading this is depressing, be thankful your not living it. This is my life and this is as real as it's gets. I'll continue to do the best I can, but the struggles of living and losing your mind is a challenging end. 

Lately, people have been making comments on my hygiene. Seems easy enough to fix, but it just doesn't happen. I care, but don't care.

A friend of mine Laurie just left me at Cafe Buunni. I try not to depress the people around me. It's getting hard these days. Told her I was heading down to Tampa in a few weeks with the anticipation of moving there. I explained there's no choice since I've found nothing here I can afford here. The important thing is I move before the money I have for moving and a deposit runs out. I've never been to Tampa, so this should be interesting. 

At times I feel I have nothing here in NYC, but I do have good friends, lifelong friends as well as many people that care and check in with me frequently. It must be hard for them to watch me deteriorate. I'll miss NYC.

A friend sent me info about a nursing home in the Bronx last night. I'm so far removed from that ever happening. Call me selfish.

I'll be thankful for having my own place and a roof over my head. These days I appreciate the little things.


Tuesday, February 19, 2013

FTD Island

FTD Island
An FTD Patient Sanctuary

Wouldn't it be nice. You unfortunately get a bad lottery ticket and get stricken with a life altering terminal illness. You lose your job, money, loved one at an age where life is going great and your on cruise control. As you slowly lose your mind, you drive those left around you crazy and strip them of the life they had. Your loved ones and caregivers watch as you change and disintegrate before there eyes.

75% of those with FTD don't have any insight or awareness that they're sick. The other 25% are painfully aware and become foreigners to themselves and others around them. We lock ourselves in bedrooms and homes painfully isolating our deteriorating minds from a world gone amok. We try everything to return to normalcy. Medications work for some, loved ones support helps others. Sometimes we are aware and care, most of the time we live not even thinking and just existing without awareness. There are always those wakeup calls that bring us back. The hug and kiss, the "I love you Dad." We give a response and are "back" before fading to who we are now.

Yesterday I booked my trip to Salt Lake City for the AFTD education conference in April. I've been trying in earnest to book it for over a month and struggling every step of the way. Confusion and indecision kicking in at each step. Constant frustration over every little detail that I don't know if I should do or not do. For business I routinely booked 120 flights a year, hotel, car and restaurant reservations. That was without the demanding job I was responsible for. Last year I remembering booking my reservations to the AFTD Conference immediately after it's announcement. Air, hotel, transport and corresponding paperwork were a breeze. Yet I feel exactly the same physically as last year.

A year ago it really bothered me standing out in the street not knowing where to go or what to do. Now hanging and wandering are almost normal. There are those brief moments though. A couple of weeks ago I was doing my supermarket/restaurant wandering thing of walking in and out of each place like I have a thousand times before. It was raining and I was standing under an awning when a couple approached me that I haven't seen in a while. They asked if I was okay. I sort of stuttered an answer and just stood there with a sort of shocked look. They had a concerned look and it was obvious I was in a bit of distress. In that moment I felt my life incapsulated. Where weird behavior and strange life struggles was so normal to me and then a shocking slap across the face wakeup call. No question things are slipping.

Now I'm facing having to move. Oh yeah. We having fun yet. Heard back from my landlord who owns multiple buildings in NYC. No luck, unless I want to move to a rough area of the Bronx. No luck from any friends or acquaintances either. I have a few months before I run out of moving money, so I'm not panicking.

I'm heading to Tampa in March with an open mind. Received a letter from someone about the lack of public transportation and how everything is scattered with the occasional gas station, 7/11 etc. Of course I'm picturing myself in 90 degree heat waiting for a bus for God know's how long. Finally get to a supermarket and after doing my "wandering" thing, come home empty handed to an empty refrigerator because GLWD God's Love We Deliver isn't in Tampa. Help! I want off this roller coaster. I spoke to my friend in Tampa who told me not to panic because there are always solutions. 

Amazing how quick life can turn upside down. I just have to keep it right side up. I will land on my feet  no matter what happens and things will be okay. There's just to much stuff to get accomplished and I can't let a little FTD get in my way. My 15 year old son Myles told me from Seattle, "Dad, you just have to keep fighting." So right. He feels my struggles.

A member of the FTD Patient Support Group found an Island in the Caribbean for us to all go. I'd be there in a heartbeat. 


Tuesday, February 12, 2013

FTD and Motivation

FTD sucks the motivation out of you. I've been highly motivated all my life. I never worked a 5 day, 40 hour work week, alway 6-7 days and hours as many needed. I've lived hard and traveled hard. My vacations have been extensive and I've been lucky enough to have been to 3/4 of the countries that occupy this planet. I love smiling, laughing and having a good time.

How fitting my arch nemesis would be a disease that robs your mind and sucks the life out of you. The last time I left my apartment other than a quick cup of coffee was meeting the filmmaker, Joe Becker downtown months ago. Seems the only time I go downtown is to get a haircut and those are few and far between and are instigated by the prompting of comments.

In June 2010 when I was diagnosed with FTD/dementia I used to take the same 2 mile walk every day in the city. I used to have coffee at my friends David/Ruthie each morning after waking them at 6:30am. Then it was Starbucks till it was made clear my royal presence was no longer welcome.

Now, I'm at cafe Buunni smiling because I'm out and doing something, writing. I come here maybe 2 times a week for a couple of hours to write. What do I do the rest of the time. Nothing. I sit at home and do nothing. The TV might be on but I rarely watch it. I'm in an empty gaze and miles away.

I sit alone and try to understand the truths of how I'm living and try to figure out and influence the present and future. How do I get myself out the door? How do I write consistently in my blog? How do  I get back to filming? Eating healthy and taking care of my hygiene which is slipping. The truth is it's getting harder to do anything or think anything through or do anything. I feel no pain nor anything holding me back. It is nothing tangible that I can say, ha that's the reason I'm acting this way. So what is it and why can't I just get up and get moving. It's because an area of my brain is under attack and has stopped functioning. My motivation has been stolen from me.

The whole concept of being robbed of your motivation is so foreign, I'm not sure if anyone can understand it. Is motivation a tangible thing you can see and feel. Where does the drive come from that has us function and conquest life. The big toe? No, an area of the brain. When you get paralyzed you can't walk. What happens when that area of Frontal and Temporal area of the brain dies. You lose your motivation. Just one of the lovely symptoms of FTD. Welcome to FTD world.

When I say sexual remarks to someone in the street I've never seen before or argue with the Chinese restaurant owner that she should get divorced and marry me, I'm just sort or doing normal things in my life. BTW I wasn't hurt that the Chinese restaurant owner wouldn't marry me. I don't even know her name. Once again it's an area of my brain is under attack that normally keep humans as humans and under control.

A friend came over for dinner the other night. Within 1 minute I broke dishes, glasses and things went flying. She left and wrote me that I scared her. I wrote back my aggression was not aimed at her and would probably take an army of shrinks to figure out the effects of losing your mind.

I have a friend who is looking to try and find grant/grants to enable me to continue to live and do this work in NYC. Most Grants are for Caregivers or Research. If anyone has any suggestions, please let me know. My landlord and others have told me there are no rents in my price range. New York City is home and I'd like to stay, but I'm preparing mentally to move. I'll be visiting Florida in March and looking for a place I can afford. Right now I'm leaning toward's the Tampa area. Might as well be somewhere warm and by the water. I have a few months and am not in panic stage, but pressure is there. Hope I'm not heading towards disaster. Navigating unchartered waters with FTD has become a way of life.

As a good friend always writes, "Forge ahead."


Tuesday, February 5, 2013

Memantine/Namenda FTD Study Released

Hi Everyone,

Many of us new this was coming. Now it's official here in the US. A study sponsored by Forest Laboratories Inc, has proven that the drugs Memantine/Namenda have absolutely no benefit for those with FTD and does not support it's use with FTD.


There was another Namenda study done in Europe and released at the IAFTD conference in Manchester, England in October 2012. I will copy over the message relating to this announcement from Sharon Denny, program director of AFTD.

A multi-site clinical study of Memantine/Namenda use in bvFTD and semantic PPA that took place over the past few years is complete and the data analyzed. It's not published yet, but was the topic of a presentation at the Manchester conference. The study design could only detect large effects, and concluded "there was no benefit of Memantine/Namenda treatment in bvFTD of semantic PPA". That's not to say there aren't individuals who do experience benefit. Like all med/treatment questions there's variability from person to person. AND you should always coordinate med changes with your doctor; he/she will only be able to help over time if it's a partnership. 

I stopped using Namenda in October and have actually have been healthier no longer suffering the extreme tiredness/exhaustion side effects of the medication. I've also been contacted by many patients and caregivers who also found the drug to have no effect.

There are also some unfortunates that have been whammed with both Alzheimer's and FTD.  Consult with your doctor if you fall into that category.

Aricept is listed as medication to avoid with FTD. You will find a link to the UCSF article listing Aricept and other medications to avoid under "links" on the right side of this page.


I want to thank everyone for there support and suggestions on my living situation and my impending move. I've been consulting with friends and been doing much soul searching. A plan is coming together which I will write about in a couple of days.


Sunday, February 3, 2013

Moving with FTD

Amazing what one day can do. It's a good thing I'm losing my mind or I'd think I was going crazy. Yesterday I was writing how I need to move and I'm not sure what I could afford or where I'm going to go. Now it's less than a day later and a plan is possibly coming together.

As soon I got home last night from Buunni there was an email waiting from a friend Glenn who "snowbirds" to Southern Florida on weekends. Glenn and Maddy are wonderful old friends. Glenn is one of those true straight shooters in life that you can really trust. He read my blog and wrote that  they have very inexpensive apartments down there and he and wife could make appointments to see places down there if I was interested. My first impulse was, no. I really don't know anyone there plus that's where all of us Jewish Dinosaurs wind up and I'm not at dinosaur age yet. Guess I marinated on it while I was sleeping because when I woke I was thinking that warm weather, cheap rent and my mother wasn't a bad thing. Plus I'm approaching my walrus/dinosaur age quickly. My mom is going to be 83 and is alone down there. Wouldn't hurt for her to have some family around.

So I woke, spoke to Glenn in Palm Beach and Diana in Tampa and I'll be checking out both areas and probably be moving to Florida in the next few months. What the hell, got to go somewhere.  Only negative is my kids are far, but the way it is now I can't afford to see them so maybe this will work out with lower expenses. I called my mom in Florida and told her I would be moving to Florida.

Last night a good friend of mine Alice came over. I told her about my Florida plan. She told me 2 weeks ago I was moving to Arizona. Last week I was moving to Inwood, and this week I'm  moving to Florida. Hey, I have to go somewhere. Right now I'm petrified to spend a penny. Rent is $1,700 SS is $2,100 I'm late on my dentist work and I need $400 for that. I can't follow money anymore and am petrified to spend. At least in Florida the rents are around $500 and I could live like a human without having to beg. Alice reminded me that I hate Florida and I don't know anyone there. They also don't have GLWD God's Love We Deliver (meals on wheels type service) I do have problems preparing meals and deciding what to eat. Well, I have to go somewhere. 

I agreed with Alice that I don't know what the hell I'm doing but I told her that I have to do something. I've a few more months and then I won't have money to move. Then what happens? Nursing Home? Forget it, I'd rather live on the streets. Alice asked if I spoke with my POA and other friends. Yes, but they have there own lives and can't get wrapped up in the ongoing drama of Howard Glick FTD. Right now I rarely leave my apartment or see anyone. What does it matter where I go. She brought up medical help, I've support here and friends. All true. Alice told me she spoke to my friend Marc {POA) in Seattle a few weeks ago and he said it was insane for me to move anywhere. 

I'm lucky I'm doing as well as I am, but thinking anything through is getting impossible. I just feel like disappearing to somewhere and just write, film eat, breathe and drink wine. Alice texted Marc and said we need to have a conference call to figure this all out. Sharon Denny of AFTD has been a huge help as well and I suggested that she be in on the call if all the planets can align and everyone can get together. Alice asked if I wanted to be in on the call. Told her I don't really care. Just want to wind up somewhere, where I have enough money to live like a human and see my kids once in a while. 

Someone brought up last week that there are foundations that help people like me who are doing work that's helping many. This is brought up to me every few months, but that it. If someone out there can truly do something, I'd be forever grateful. I'd really just like to stay where I am.

I'm also extremely grateful for everyone out there that's been helping me over the last couple of years. I'd be no where without the love and support of all of you.

Starting to get a bit worn down here.


Friday, February 1, 2013

FTD and Wine Time

I keep getting choked by my lack of ability to function. The time and energy to get anything done is increasing exponentially. Last year at this time I booked the trip to the AFTD conference and sent in the  paperwork for a travel grant in one quick sitting. Flight, hotel, transportation, etc. I've been working on it for a week and still haven't even booked the flight. Haven't made it past figuring out which airport to fly out of, times, cost and transportation. Everything is blending into each other and I go blank and frozen with a sort of deadpan look. So I sit and do nothing. I watch tv except I just have it on and I'm not really following it, in fact I'm not really following anything. Welcome to the new me. Just went to the bank to get quick pay set up. It took a while because I forgot my password. The banker who knows me and knows I don't "get it", kept trying to explain it to me with me repeating to him don't bother to explain it, just set it up. It was like a bad comedy.

Relocating and the thoughts put into it are similarly blended like the plane ticket. I can't figure it out. I'm going to need to move, but have no idea how long the money I have will last, what I need to pay for rent and even if I can find it or if I need to leave NYC. My thoughts aren't racing, there just not coming together so I can organize or plan anything. Of course my thoughts slip to the urine laced air in the nursing home I visited. Ain't going to be my home.

Yes, I'm overloaded for this rare afternoon blog writing session at Cafe Buunni. Lately, I've rarely left my apartment lately. I'm lonely at home, but overstimulated and can't deal with the public on the outside. Last night, went out and wasn't sure what I was doing. A couple I haven't seen in a while came up and gave me a big hello. I must've looked like a deer in the headlights because of the immediate turn the conversation took. They asked what I was doing.  Just standing getting a bit wet from the rain blowing my way. Yea, I don't like going out.

But wait, there's more :-) Good stuff. Fooled ya. On the positive side I will make it to the AFTD conference and I'm looking forward to seeing my fellow FTD'ers as well as the caregivers I've been in contact with. I've also been invited to a conference in Arizona where I'll be talking FTD for about 2 hours in front of 200 people. It's going to be great and I'm very excited. 

I'm slowly losing my mind, but I'll keep forging ahead on the FTD projects I'm working on. Whereas at times I feel the Universe is closing in on me, I just have to hope the right help will show up at the right time. 

I will keep finding ways to get things done. I have a lot of life left in me. I just hope I'm accomplishing something with what I'm doing.
Have a good weekend all.
Time for wine. Red, red wine.