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.
Howard
Friday, February 22, 2013
Tuesday, February 19, 2013
FTD Island
FTD Island
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| 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.
Howard
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."
Howard
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."
Howard
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.
(click)
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.
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.
Howard
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.
Howard
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.
Howard
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.
Howard
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.
Howard
Monday, January 28, 2013
AFTD Education Conference 2013
The Annual AFTD Education Conference is in Salt Lake City, Utah on April 12, 2012.
Caregivers as well as patients have been invited to the conference. Last year was the first year patients were invited. We had 9 patients and it was a successful meeting. This would be a good place for us to get educated on FTD as well as have our voice heard as to the needs of patients. This year we're planning more activities for patients to get together. Since FTD is such a rare disease, this is an opportunity to see your not alone and learn different tecqniques of dealing with FTD. It's also an opportunity to get for caregivers and patients to get educated on the latest information on FTD.
Respite grants for travel are available.
I'll be getting in early afternoon on April 11th and will be arranging for an informal dinner for whichever patients and caregivers want to join in.
Besides being educated this will be an excellent conference for those in the USA, Canada to network and help set up new support groups for patients and caregivers.
Besides being educated this will be an excellent conference for those in the USA, Canada to network and help set up new support groups for patients and caregivers.
Here are the links to the Conference and the agenda:
2013 AFTD North American Education Conference
Conference Information Link
2013 AFTD Salt Lake City Conference
Registration
Conference Information Link
2013 AFTD Salt Lake City Conference
Registration
Friday, January 25, 2013
FTD and Medication Madness
I take no pills for FTD. There are no FDA approved meds for FTD. It's just hit and miss with drugs for other ailments used to try to address whatever symptoms the FTD'er is going through at the time. If your not seeing a psychiatrist or neurologist every month to stay on top of it, medications can become a problem in themselves.
Besides FTD, I've had cancer and heart disease. All 3 of them in the last 2 years. The cancer was cut out and FTD, well FTD has a mind of it's own, pun intended. That leaves heart disease. A heart attack and 3 stents has me taking 6 pills a day.
Over the last couple of months with my routine getting shot to hell, so has my daily pill regiment. The other day I took a serious look at pill container and it looked like a swiss cheese package. I stopped following the days listed and just open whatever day my fingers flip open of the 30 day container. Of course this leads to days when I'm not sure if I took them or not in the middle of the day. When that happens I don't take any more for fear of doubling up.
Thinking about it, it got all screwed up because of a loading foul up. Some of the days have 7 pills instead of 6. Pilot error in loading the pills. I tried to see what I doubled up on, but couldn't figure out which pills are which. A few are the same size, but all the pills have symbols on both sides. I kept forgetting what, what while trying to check. Either that or I'm not sure if the extra pill is a generic with different symbols altogether. Okay, so what is better, taking an extra pill or missing a days worth? Then again I keep forgetting to take them anyway. I'm ready to get refills. It's that time of the month, but the container is only half full.
Oh well, next?
Have a nice weekend.
Howard
Besides FTD, I've had cancer and heart disease. All 3 of them in the last 2 years. The cancer was cut out and FTD, well FTD has a mind of it's own, pun intended. That leaves heart disease. A heart attack and 3 stents has me taking 6 pills a day.
Over the last couple of months with my routine getting shot to hell, so has my daily pill regiment. The other day I took a serious look at pill container and it looked like a swiss cheese package. I stopped following the days listed and just open whatever day my fingers flip open of the 30 day container. Of course this leads to days when I'm not sure if I took them or not in the middle of the day. When that happens I don't take any more for fear of doubling up.
Thinking about it, it got all screwed up because of a loading foul up. Some of the days have 7 pills instead of 6. Pilot error in loading the pills. I tried to see what I doubled up on, but couldn't figure out which pills are which. A few are the same size, but all the pills have symbols on both sides. I kept forgetting what, what while trying to check. Either that or I'm not sure if the extra pill is a generic with different symbols altogether. Okay, so what is better, taking an extra pill or missing a days worth? Then again I keep forgetting to take them anyway. I'm ready to get refills. It's that time of the month, but the container is only half full.
Oh well, next?
Have a nice weekend.
Howard
Wednesday, January 23, 2013
FTD and Routine Maintenance
Wrote a blog yesterday and went home totally exhausted. It was the first time I've written in a month and I never realized how much it took out of me. Besides falling asleep in the afternoon for a few hours, I also fell asleep at 8:30pm last night. When you have less of a brain, it's exhausting using the remaining cells left up there.
Today is the second day in a row up I'm up and out of the house. Seems like my routine went to hell. The last month found me leaving my apartment briefly each day just to get a quick cup of take out coffee before heading home. Of course there were exceptions, but they were few and far between.
Guess what, time to put all the crap aside and give myself a big kick in the ass and get myself together. I have the self determination and the discipline, but it is so hard to make it happen. Getting anything done is like a major feat for those with FTD. FTD steals our motivation and planning cable. Just arrived at Cafe Buunni and realized that I didn't have breakfast again. In fact, I haven't had breakfast in over a month. It used to be just cheerios every morning and then I went over to the Atkins diet. My cardiologist had me switch back but I still haven't been able to my morning routine back together. Last week I threw out milk that went bad because it wasn't used in my Cheerios. I'm supposed to put in my monthly order for heart medicines tomorrow, but noticed this morning I have about a three week supply. I guess breakfast isn't the only thing I'm forgetting. I usually have my pills after breakfast, but since I've been missing breakfast, the morning routines surrounding it are also suffering.
It's a domino effect. So how did my routines get shot to hell? I'm not really sure. I did have it traced back and explained it to someone the other day, but it eludes me now. I know I've been sleeping better and that extra hour of sleep threw off my timing and delayed my shower, my tv news routine etc. I normally would leave the house by 6:30am. If I didn't leave the house by 7am, there was a good chance I wouldn't leave the house at all that day. It also makes it hard facing the day knowing that I continue to be aware that I'm unaware of what I'm saying and doing often. The other day when I was out getting coffee a jogger went by wearing a black spandex suit. As she passed me I turned and said, "nice ass". A day or so later I realized that, that was a bit inappropriate. Though no harm was done, incidents in public are common and they weigh me down. I bring this up because when you know your off it makes it much harder to get out the door of my apartment. I'm off and I know it. When I'm by myself my behavior is worse in public. When I'm with others, which is becoming very rare I'm more in control. Why? Sorry, no time to think it through right now.
Now that I'm working on getting myself and my routine back together, my new arrival time at Cafe Buuni is 7:30am. I've made it there three days in a row now. I just need to get my pill taking, breakfast and all my other things back together.
This is some way to live your life. I want to thank everyone who has written to me and researched Nursing Homes and Long Term Care in the NYC area. Your love and care is invaluable. I believe and am hoping the nursing home we visited was just a bad one and poor research done by the organizer of the trip. Hey, everyone makes mistakes. If this was a good one, bring on euthanasia :-) I've been to two LTC facilities now and at both I was asked if I was checking for my parents. Neither heard of FTD. I explained at both that I have FTD and statistic wise, this could be my home within a few months to a few years. I need to be responsible and have things organized. This is taking a toll on me visiting these facilities. "Memory Club" will be making these trips once a month and I just don't have the stomach to go by myself.
I'm 55, if you don't think this is rough, think again. I started showing symptoms and getting sick because of FTD 8-9 years ago. Like everyone else with FTD, I don't feel there's anything wrong with me. I need to think about myself, life and actions to realize how my mind is off and deteriorating. Most who are around me short term also have no idea I'm sick. Most who think they get it, don't.
Well, time to publish and get home and wait for my GLWD God's Love We Deliver meal delivery. I deeply appreciate there charity service. It's a lifesaver not having to make a decision about what to eat and just throwing one of the aluminum containers in the toaster oven. Still, there only so much spices can do to help these along.
There's a lot to look forward to. I've got to get help planning out what, where and when I need to move. I'll get through it.
I've a lot of good things coming up and plan to schedule many more with conference's etc. FTD, big deal. Still have plenty of life to live.
Howard
Today is the second day in a row up I'm up and out of the house. Seems like my routine went to hell. The last month found me leaving my apartment briefly each day just to get a quick cup of take out coffee before heading home. Of course there were exceptions, but they were few and far between.
Guess what, time to put all the crap aside and give myself a big kick in the ass and get myself together. I have the self determination and the discipline, but it is so hard to make it happen. Getting anything done is like a major feat for those with FTD. FTD steals our motivation and planning cable. Just arrived at Cafe Buunni and realized that I didn't have breakfast again. In fact, I haven't had breakfast in over a month. It used to be just cheerios every morning and then I went over to the Atkins diet. My cardiologist had me switch back but I still haven't been able to my morning routine back together. Last week I threw out milk that went bad because it wasn't used in my Cheerios. I'm supposed to put in my monthly order for heart medicines tomorrow, but noticed this morning I have about a three week supply. I guess breakfast isn't the only thing I'm forgetting. I usually have my pills after breakfast, but since I've been missing breakfast, the morning routines surrounding it are also suffering.
It's a domino effect. So how did my routines get shot to hell? I'm not really sure. I did have it traced back and explained it to someone the other day, but it eludes me now. I know I've been sleeping better and that extra hour of sleep threw off my timing and delayed my shower, my tv news routine etc. I normally would leave the house by 6:30am. If I didn't leave the house by 7am, there was a good chance I wouldn't leave the house at all that day. It also makes it hard facing the day knowing that I continue to be aware that I'm unaware of what I'm saying and doing often. The other day when I was out getting coffee a jogger went by wearing a black spandex suit. As she passed me I turned and said, "nice ass". A day or so later I realized that, that was a bit inappropriate. Though no harm was done, incidents in public are common and they weigh me down. I bring this up because when you know your off it makes it much harder to get out the door of my apartment. I'm off and I know it. When I'm by myself my behavior is worse in public. When I'm with others, which is becoming very rare I'm more in control. Why? Sorry, no time to think it through right now.
Now that I'm working on getting myself and my routine back together, my new arrival time at Cafe Buuni is 7:30am. I've made it there three days in a row now. I just need to get my pill taking, breakfast and all my other things back together.
This is some way to live your life. I want to thank everyone who has written to me and researched Nursing Homes and Long Term Care in the NYC area. Your love and care is invaluable. I believe and am hoping the nursing home we visited was just a bad one and poor research done by the organizer of the trip. Hey, everyone makes mistakes. If this was a good one, bring on euthanasia :-) I've been to two LTC facilities now and at both I was asked if I was checking for my parents. Neither heard of FTD. I explained at both that I have FTD and statistic wise, this could be my home within a few months to a few years. I need to be responsible and have things organized. This is taking a toll on me visiting these facilities. "Memory Club" will be making these trips once a month and I just don't have the stomach to go by myself.
I'm 55, if you don't think this is rough, think again. I started showing symptoms and getting sick because of FTD 8-9 years ago. Like everyone else with FTD, I don't feel there's anything wrong with me. I need to think about myself, life and actions to realize how my mind is off and deteriorating. Most who are around me short term also have no idea I'm sick. Most who think they get it, don't.
Well, time to publish and get home and wait for my GLWD God's Love We Deliver meal delivery. I deeply appreciate there charity service. It's a lifesaver not having to make a decision about what to eat and just throwing one of the aluminum containers in the toaster oven. Still, there only so much spices can do to help these along.
There's a lot to look forward to. I've got to get help planning out what, where and when I need to move. I'll get through it.
I've a lot of good things coming up and plan to schedule many more with conference's etc. FTD, big deal. Still have plenty of life to live.
Howard
Monday, January 21, 2013
FTD and Dwindling Hope
Ah, nothing like the French Riviera in January. Warm weather, beautiful beaches littered with scantily bikinied or topless French woman. I can always have Nice in my mind as I sit here in 26 degree New York.
It's been about a month since I've been to Cafe Buunni. The employee that I had a problem with quit. Good riddance. Haven't really left my apartment at all in a while. I'll get into that later, but I want to focus on my wonderful last week.
Last Tuesday I met with the remaining members of my old support group, "Memory Club" and we took a tour of a Nursing Home in Riverdale. This is a posh area of NYC littered with cobblestone homes. In my quest to get my future set I need to visit facilities in my area so when the time comes, everything will be prepared.
We entered the NH and it had a beautiful fish tank. We soon were escorted upstairs towards the recreation room. cruising the hallways the putrid smell of urine assaulted us. That smell hung in the air throughout our tour on the three floors we visited. As we walked we noticed the rooms had 3-4 beds per tiny room. You could have a room with 1-2 beds if you pay additionally. Mattresses were visibly lumpy. Master locks were on the closets and cable locks secured the bedside dresser. One bathroom for every 2 room and a communal shower. The Home wasn't run down, just very institutional. My friend Leo commented, "this is a place to die, not to live." I asked if any resident had FTD. No. The recreational room was sparse and cold. There were a few people my age with disabling illnesses. This was suppose to be one of the nicer Nursing Homes. Another Nursing Home that I enquired about in the area was having problems with patient abuse. This was a place people people go that have medicaid or medicare and are broke like me. After the 20 minute tour we gathered silently in the lobby. All of us were shaken up. This place was a nightmare. Our Memory Club director was shocked and stating how there was no way in hell she would let her parents anywhere near a place like that. Boris, a support group member who tries to mooch a meal no matter where we go was silent. You know it's bad.
I left there in a state of shock. I'm trying to find a place where friends can check up on me from time to time. I would rather the Universe suck me up to wherever our next destination is than wind up in a place like that. Well, at least there's a shot I'll still get my disability.
A friend of mine found a large NYC law firm to take on my Unum Long Term Disability case. This firm really was going to put in the resources and do whatever it took to help me get my disability reinstated. The firm was also going to do it Pro Bono. I had a long term disability plan which covered FTD while I was working. Problem was that I was misdiagnosed and by the time it was discovered I had FTD, the allotted time for appeal had passed. I've been fighting this technicality for years. Unum knows now that I had FTD while working, but they don't have to pay so they don't. That's why they are the No. 1 disability company in the world. At least now I had this law firm on my side. I knew it was a 50/50 shot, but there was hope and that was keeping me going.The firm worked very hard to find a legal path towards getting me my disability and I appreciate all there help.
On Friday I was contacted and told the law firm exhausted all of the directions they were looking and there was no legal path for getting my disability reinstated. I've been fighting tooth and nail for years and now it was over. Gone with it was any hope of living a decent lifestyle. Gone was the thought of being able to visit my children a few times a year and help them financially. If I wanted to see them at all, it would be at the generosity of others or I'd have to be begging. Gone was the thought of possibly ever having a car or taking even a short vacation. Gone was thought of visiting Israel again.
Hope is a funny thing. Though sick and slowly losing my mind, I never gave up that things could improve a bit. That was till now. Now, hope is officially gone. All of a sudden I'm picturing my only option in the future would be the urine laden hallways of the Riverdale Nursing Home. My reality was now settling in. My rent is $1,700 and my SSDI is $2,000. Because of some generous people I can stay another 6 months or so before moving. Then where, out of NYC I guess before I become a ward of the state. NYC is expensive and I don't live in an expensive apartment. I don't know where I'm going to go or what I can afford. the last year has had me lose medicaid, medicare pharmaceutical help, food stamps as well as other services. I keep getting cut back while I'm cutting back. There's nothing left to do but figure out how to move on. I spent the weekend in a panic state. I simply could not put things together on what to do. I've never felt such a loss of hopelessness in my life. Simply nothing to look forward to.
Lately, I've been losing words and have been having more difficulty talking. This weekend I was shocked how much stress was affecting me and how quickly it could degrade. I spoke with my friends Alice and Howard. We talked about my friends having a conference call to figure out my options. I simply can't put it together and have no idea what to do. I don't know whether I'm coming or going. I have friends in my area and the FTD medical expertise here that's extremely limited in this country, but simply no money to stay.
I've a few months to put together a plan and implement it. It's Monday and I'm back at Cafe Buunni and I will fight on. I knew they would be getting tougher and I'll just have to keep going and let the chips fall where they might. My choices and hopes in life are quickly becoming few and far between. Yet, I'm determined to get back on the blogging and filming "Howard's Brain" bandwagon. I've not been able to keep up with all the groups I belong to. Just can't handle as much anymore.
In my push to further awareness I've reached a couple of milestones. This blog has crossed over 50,000 people viewing the pages in the year and half since it's inception. The FTD Patient Support Group I created has 51 members and is over a year old. I reached 55 years old a few weeks ago and though I've slowed a bit I'm still kicking.
Things are rough and there going to get much rougher. Not every book has a happy ending. There were times over the last month where I've never felt so all alone and just wishing somehow the Universe will be merciful. We all live, we all die. What matters is how we live while we're here and I'm determined to keep going for as long as possible.
Time to head back to the Riviera :-)
Howard
It's been about a month since I've been to Cafe Buunni. The employee that I had a problem with quit. Good riddance. Haven't really left my apartment at all in a while. I'll get into that later, but I want to focus on my wonderful last week.
Last Tuesday I met with the remaining members of my old support group, "Memory Club" and we took a tour of a Nursing Home in Riverdale. This is a posh area of NYC littered with cobblestone homes. In my quest to get my future set I need to visit facilities in my area so when the time comes, everything will be prepared.
We entered the NH and it had a beautiful fish tank. We soon were escorted upstairs towards the recreation room. cruising the hallways the putrid smell of urine assaulted us. That smell hung in the air throughout our tour on the three floors we visited. As we walked we noticed the rooms had 3-4 beds per tiny room. You could have a room with 1-2 beds if you pay additionally. Mattresses were visibly lumpy. Master locks were on the closets and cable locks secured the bedside dresser. One bathroom for every 2 room and a communal shower. The Home wasn't run down, just very institutional. My friend Leo commented, "this is a place to die, not to live." I asked if any resident had FTD. No. The recreational room was sparse and cold. There were a few people my age with disabling illnesses. This was suppose to be one of the nicer Nursing Homes. Another Nursing Home that I enquired about in the area was having problems with patient abuse. This was a place people people go that have medicaid or medicare and are broke like me. After the 20 minute tour we gathered silently in the lobby. All of us were shaken up. This place was a nightmare. Our Memory Club director was shocked and stating how there was no way in hell she would let her parents anywhere near a place like that. Boris, a support group member who tries to mooch a meal no matter where we go was silent. You know it's bad.
I left there in a state of shock. I'm trying to find a place where friends can check up on me from time to time. I would rather the Universe suck me up to wherever our next destination is than wind up in a place like that. Well, at least there's a shot I'll still get my disability.
A friend of mine found a large NYC law firm to take on my Unum Long Term Disability case. This firm really was going to put in the resources and do whatever it took to help me get my disability reinstated. The firm was also going to do it Pro Bono. I had a long term disability plan which covered FTD while I was working. Problem was that I was misdiagnosed and by the time it was discovered I had FTD, the allotted time for appeal had passed. I've been fighting this technicality for years. Unum knows now that I had FTD while working, but they don't have to pay so they don't. That's why they are the No. 1 disability company in the world. At least now I had this law firm on my side. I knew it was a 50/50 shot, but there was hope and that was keeping me going.The firm worked very hard to find a legal path towards getting me my disability and I appreciate all there help.
On Friday I was contacted and told the law firm exhausted all of the directions they were looking and there was no legal path for getting my disability reinstated. I've been fighting tooth and nail for years and now it was over. Gone with it was any hope of living a decent lifestyle. Gone was the thought of being able to visit my children a few times a year and help them financially. If I wanted to see them at all, it would be at the generosity of others or I'd have to be begging. Gone was the thought of possibly ever having a car or taking even a short vacation. Gone was thought of visiting Israel again.
Hope is a funny thing. Though sick and slowly losing my mind, I never gave up that things could improve a bit. That was till now. Now, hope is officially gone. All of a sudden I'm picturing my only option in the future would be the urine laden hallways of the Riverdale Nursing Home. My reality was now settling in. My rent is $1,700 and my SSDI is $2,000. Because of some generous people I can stay another 6 months or so before moving. Then where, out of NYC I guess before I become a ward of the state. NYC is expensive and I don't live in an expensive apartment. I don't know where I'm going to go or what I can afford. the last year has had me lose medicaid, medicare pharmaceutical help, food stamps as well as other services. I keep getting cut back while I'm cutting back. There's nothing left to do but figure out how to move on. I spent the weekend in a panic state. I simply could not put things together on what to do. I've never felt such a loss of hopelessness in my life. Simply nothing to look forward to.
Lately, I've been losing words and have been having more difficulty talking. This weekend I was shocked how much stress was affecting me and how quickly it could degrade. I spoke with my friends Alice and Howard. We talked about my friends having a conference call to figure out my options. I simply can't put it together and have no idea what to do. I don't know whether I'm coming or going. I have friends in my area and the FTD medical expertise here that's extremely limited in this country, but simply no money to stay.
I've a few months to put together a plan and implement it. It's Monday and I'm back at Cafe Buunni and I will fight on. I knew they would be getting tougher and I'll just have to keep going and let the chips fall where they might. My choices and hopes in life are quickly becoming few and far between. Yet, I'm determined to get back on the blogging and filming "Howard's Brain" bandwagon. I've not been able to keep up with all the groups I belong to. Just can't handle as much anymore.
In my push to further awareness I've reached a couple of milestones. This blog has crossed over 50,000 people viewing the pages in the year and half since it's inception. The FTD Patient Support Group I created has 51 members and is over a year old. I reached 55 years old a few weeks ago and though I've slowed a bit I'm still kicking.
Things are rough and there going to get much rougher. Not every book has a happy ending. There were times over the last month where I've never felt so all alone and just wishing somehow the Universe will be merciful. We all live, we all die. What matters is how we live while we're here and I'm determined to keep going for as long as possible.
Time to head back to the Riviera :-)
Howard
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.
Howard
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.
Howard
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
Howard
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
Howard
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.
Howard
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.
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.
Howard
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.
Howard
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.
Howard
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.
Howard
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.
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.
(Click)
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.
Contact:
Natasha Young: natashastela@yahoo.com
FTD Patient Support Group -
For firmly diagnosed FTD Patients
Contact Howard Glick: howardjglick@gmail.com
Early Stage Alzheimer's / dementia support group - For firmly diagnosed Dementia Patients
Contact: John Sandblom: jrs1@q.com
*Please share this by tweet/Facebook etc.
Howard
Thursday, November 29, 2012
FTD and Medicare
In July 2010, I re-entered the world as we know it. I spent about 7 weeks in the hospital psych ward and was relieved to find out I wasn't bipolar. Now I had a some new weird opponent called FTD to face. Returning to my apartment alone and broke, I also needed to find specialized medical help and had to start dealing with insurance companies. I had medicare and a supplemental insurance carrier.
If you have straight medicare, you probably pay 80/20. There are many free medicare supplemental programs you can join for free.
I called my medicare supplemental insurer, Fidelis who gave me the names of 2 neurologists in my area. I googled each name and I found Dr. Kyra Blatt who was highly qualified and specialized in dementia. I started seeing Dr. Blatt, a community doctor who I loved dearly and had gone way out of her way to help me. Dr. Blatt gave me some of the best advice I since being diagnosed. I was literally going crazy having learned I had FTD and was combing the internet for all information on this dreadful disease. Everything pointed to a soon to come drastic death. Dr. Blatt banned me from reading about FTD on the internet because there was so much inaccurate information. She told me she would've died a dozen times in the last month if she self diagnosed from the internet.
I was all shrink-ed out after 6+ years of hell. 17 pills a day, over 50 ECT's Electric Shock Treatments, VNS Vagus Nerve Stimulator surgically implanted in my chest with a wire running toward's the Vagus nerve to give my brain shocks. I fired my current psychiatrist and decided I could do a better job, so I hired myself.
Now that I was off the 17 pills a day after being misdiagnosed for six years my head was slowly clearing from being kept in a medically induced fog. It took me close to a year to recover to my FTD self. My behavior, language and 6 year history was like a checklist for a poster boy FTD patient. I was having many new difficulties which was discovered by my friend David and Dr. Blatt to have been side effects of the only drug I was on, Aricept. Dr. Blatt had contacted Dr. Ted Huey, a well known FTD specialist at Columbia. Dr. Huey confirmed that many FTD patients were having difficulty with Aricept, a drug made for Alzheimer's patients. Aricept is now on the "medications to avoid" list by UCSF. Dr. Blatt suggested that I start seeing Dr. Huey or one of the FTD specialists at Columbia. The only problem was my insurance didn't cover Columbia or any of the doctors in it.
At the same time I developed prostate cancer and my Urologist for that was out of St. Lukes hospital which was far from where I lived. I needed to have my prostate removed and surgery needed to be arranged. All the above was happening in November 2010 so I needed to act fast. It was open enrollment time for Medicare and I needed new insurance by December 31st.
The Medicare supplemental carriers were like vultures. I made some calls to the insurance carriers and found them extremely accommodating. They had free breakfasts at local diners, would come directly to my home and all sorts of fun places to meet. Each one had a yellow page type directory saying they covered just about every doctor in NYC. Each one also tried to close me like a used car salesman. My head was swimming and I was getting no where.
Finally I decided to do things reversed. Instead of looking at insurance companies and checking out there doctors and yellow page type plans, I decided to find the doctors and hospital I wanted, then find which insurance company met my needs. I needed to find the "Best and the Brightest" docs out there.
Columbia University Medical center was near me, so I started researching there doctors. Once I found out what doctors I wanted, I started calling there office managers and finding out which medicare insurance carriers they took.
I had long lists of up to 10 insurance carriers per doctor. It was painstaking work cross referencing, but I needed excellent for the major medical issues I had.
My priority was of course finding the best neurologist who was familiar with FTD. I met doctors Ted Huey and Karen Bell and liked them both. I was at an award diner where Dr. Bell won an award for being a top neurologist from Columbia. Dr. Bell was my age and from the area I grew in so there was a connection. Oxford Insurance was on Dr. Bells list.
I needed a Surgeon to remove my cancerous prostate. I found Dr. Ketan Badani was the Director of Robotic Surgery from Columbia. I met with him and liked him. Oxford.
My GP luckily took Oxford so I wouldn't need to change him.
My future Cardiologist is also a resident of Columbia and Harvard Med School grad. Oxford, yes!!!
I called the Oxford rep and she was at my apartment the next day signing me up.
One of the reasons I'm doing well is I have excellent caring doctors. There's nothing that can be done with my FTD, but Dr. Bell is experienced, intelligent and I trust her implicitly and she always has excellent advise for me. In fact, every one of my doctors I trust my life with. I've had enough screwballs and now when I see a doctor I know they listen to me and care. I'm not just a number. I
I receive letters all the time from people having incredible difficulties with there doctors. My advice, go do the research on the internet and find the best doctors in your area. Check there insurance with the office manager and then go meet and interview them. It's only your life at stake. PS don't trust the online insurance carrier list of docs. They change insurance frequently. Check with the office manager.
Right now it's open enrollment time for Medicare. You can change carriers now. For those of you with choices of insurance carriers, do the same. Put in the effort to find the best docs you get a long with. You and your health will be thankful.
Howard
If you have straight medicare, you probably pay 80/20. There are many free medicare supplemental programs you can join for free.
I called my medicare supplemental insurer, Fidelis who gave me the names of 2 neurologists in my area. I googled each name and I found Dr. Kyra Blatt who was highly qualified and specialized in dementia. I started seeing Dr. Blatt, a community doctor who I loved dearly and had gone way out of her way to help me. Dr. Blatt gave me some of the best advice I since being diagnosed. I was literally going crazy having learned I had FTD and was combing the internet for all information on this dreadful disease. Everything pointed to a soon to come drastic death. Dr. Blatt banned me from reading about FTD on the internet because there was so much inaccurate information. She told me she would've died a dozen times in the last month if she self diagnosed from the internet.
I was all shrink-ed out after 6+ years of hell. 17 pills a day, over 50 ECT's Electric Shock Treatments, VNS Vagus Nerve Stimulator surgically implanted in my chest with a wire running toward's the Vagus nerve to give my brain shocks. I fired my current psychiatrist and decided I could do a better job, so I hired myself.
Now that I was off the 17 pills a day after being misdiagnosed for six years my head was slowly clearing from being kept in a medically induced fog. It took me close to a year to recover to my FTD self. My behavior, language and 6 year history was like a checklist for a poster boy FTD patient. I was having many new difficulties which was discovered by my friend David and Dr. Blatt to have been side effects of the only drug I was on, Aricept. Dr. Blatt had contacted Dr. Ted Huey, a well known FTD specialist at Columbia. Dr. Huey confirmed that many FTD patients were having difficulty with Aricept, a drug made for Alzheimer's patients. Aricept is now on the "medications to avoid" list by UCSF. Dr. Blatt suggested that I start seeing Dr. Huey or one of the FTD specialists at Columbia. The only problem was my insurance didn't cover Columbia or any of the doctors in it.
At the same time I developed prostate cancer and my Urologist for that was out of St. Lukes hospital which was far from where I lived. I needed to have my prostate removed and surgery needed to be arranged. All the above was happening in November 2010 so I needed to act fast. It was open enrollment time for Medicare and I needed new insurance by December 31st.
The Medicare supplemental carriers were like vultures. I made some calls to the insurance carriers and found them extremely accommodating. They had free breakfasts at local diners, would come directly to my home and all sorts of fun places to meet. Each one had a yellow page type directory saying they covered just about every doctor in NYC. Each one also tried to close me like a used car salesman. My head was swimming and I was getting no where.
Finally I decided to do things reversed. Instead of looking at insurance companies and checking out there doctors and yellow page type plans, I decided to find the doctors and hospital I wanted, then find which insurance company met my needs. I needed to find the "Best and the Brightest" docs out there.
Columbia University Medical center was near me, so I started researching there doctors. Once I found out what doctors I wanted, I started calling there office managers and finding out which medicare insurance carriers they took.
I had long lists of up to 10 insurance carriers per doctor. It was painstaking work cross referencing, but I needed excellent for the major medical issues I had.
My priority was of course finding the best neurologist who was familiar with FTD. I met doctors Ted Huey and Karen Bell and liked them both. I was at an award diner where Dr. Bell won an award for being a top neurologist from Columbia. Dr. Bell was my age and from the area I grew in so there was a connection. Oxford Insurance was on Dr. Bells list.
I needed a Surgeon to remove my cancerous prostate. I found Dr. Ketan Badani was the Director of Robotic Surgery from Columbia. I met with him and liked him. Oxford.
My GP luckily took Oxford so I wouldn't need to change him.
My future Cardiologist is also a resident of Columbia and Harvard Med School grad. Oxford, yes!!!
I called the Oxford rep and she was at my apartment the next day signing me up.
One of the reasons I'm doing well is I have excellent caring doctors. There's nothing that can be done with my FTD, but Dr. Bell is experienced, intelligent and I trust her implicitly and she always has excellent advise for me. In fact, every one of my doctors I trust my life with. I've had enough screwballs and now when I see a doctor I know they listen to me and care. I'm not just a number. I
I receive letters all the time from people having incredible difficulties with there doctors. My advice, go do the research on the internet and find the best doctors in your area. Check there insurance with the office manager and then go meet and interview them. It's only your life at stake. PS don't trust the online insurance carrier list of docs. They change insurance frequently. Check with the office manager.
Right now it's open enrollment time for Medicare. You can change carriers now. For those of you with choices of insurance carriers, do the same. Put in the effort to find the best docs you get a long with. You and your health will be thankful.
Howard
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