Update: FTD Patient Support Group

I want to tell everyone that the FTD Patient Support Group is off to an excellent start. 


Some of the members have come from the FTD Support Forum and know each other. I want to thank the Moderator of the FTD Support Forum for realizing the need and the value of having a patient only group and help me identify FTD patients.

Since starting the Patient only support group a few days ago we've had 22 members join.  There is now a place for FTD Patients to go to with an upbeat,  positive and comfortable atmosphere. We talk not only about the difficult topics and our lives, but also strive towards improving our lives and once again find happiness and purpose. 

The group operates through Facebook. The group is closed and confidential. It is by invitation only and no one from the outside can see who the members are or what is discussed. There is also a live private chat service that members can use. There are patients represented from 3 countries so far. I guess that's why we get posting close to 24 hours a day.  

Sharon Denny, the program director of AFTD is a guest and helps the group by opening up the resources of AFTD to answer questions that come up. I've started using the AFTD Helpline to get answers to questions. To keep the anonymity I go to the helpline for the group to get answers for the questions unless the members want to go themselves. 

For those of you that have programs at Universities/hospitals or run FTD Caregiver Support Groups, please make sure the caregivers and loved ones of FTD Patients know about this group.

I can be contacted through my email:

howardjglick@gmail.com

If you would like an outside opinion of the group please contact Sharon Denny of AFTD. 

Thank you AFTD for announcing the group on your homepage of your Website.

As the group grows and needs change I will adjust by adding people with FTD expertise to help moderate.  

The FTD Patient Support Group will be making FTD patients and caregivers lives easier.

FTD Patient Support Group

I'm announcing the creation of the first FTD patient only support group. It will have a unique and unusual name. It will be called the "FTD Patient Support Group".

The FTD Patient Support Group will be a private group that's open to those with FTD and other similar neurological disorders. 

This will be a comfortable community for those with FTD.

AFTD

"This support group will be independently run by Howard Glick. The Association for Frontotemporal Degeneration (AFTD) has offered to provide information, education and resources at the request of group participants to help them understand and cope with FTD in their lives."

Association for Frontotemporal Degeneration Link -  AFTD

Having FTD is not the end of life, it is just the beginning of a different type of life. We can never return to the life we once had, but we make the best of the life we have now. Everyone has the right to to happiness and purpose in life. Just because we have FTD does not give us the excuse or the right to roll over and die.

FTD is a  progressive disease. We need to keep adapting and changing because of the changes being made to our brains. In the group we will be able to share our experiences to help one another go through these changes.

This a place those with FTD can go and be with others that can relate to your life. You don't need to be alone with FTD any longer.

The group is meant to give those with FTD a sense of belonging. People with FTD will not only be able to be part of something special, but will be with people they will be comfortable with in a pleasant atmosphere.

We can share our experiences, good and bad with the goal of making a better life for ourselves. We can also the learn the difficult task of learning how to educate those around us about FTD. It's important for those around us understand who we are and what we're going through. 

By sharing our experiences with each other all be able to reduce the amount pain we're going through in day to day life.

The FTD Patient Support group will be a group to go to laugh and to cry. To share our former lives and current life.

We will try to help each other keep a positive attitude and work around all obstacles. 

We'll figure out the best way to deal with the symptoms of FTD through our experiences and make our lives a bit easier to live.

We all have behavior/language/symptoms with cause issues. We'll learn to get over things fast. None of us is perfect. If we do something that bothers us, we need to get over it and move on. We'll try to reduce the dwelling and ruminating over things we can't control.

Start thinking of positive things we can do to enhance our lives.

We need to be aware and accept the changes in our lives. The life we were living is over. Accept it and make a better life for yourself today. We'll help each other do this.

We all have experience with meds and doctors.  Some things work for some and not others. We can share our experiences.

How to Join

You need to have a Facebook account. Once you have a Facebook account you need to friend me. Search on Facebook for Howard Glick. There are a few, but i'm the only one with a Starbucks sign behind me. 

Send me a message with a request telling me you have FTD and would like to join the FTD Patient Support Group. I will then add you to the group.

The names of the people in the group are confidential and will not be shared with anyone. No one will be able to see or access any of the names or information on any of  the members of the group from the outside. You can use an alias if there is any concern. No personal information will ever be disseminated by me.

If FTD patients need the help of caregivers to participate, they are welcome.

Vulgar language and adult situations will be tolerated. This is real to our world and as long as it is being used to vent, or used in a constructive manner that's fine.

We already have people from 3 different countries that have joined.

I will be the moderator and be monitoring the group 7 days a week.

If you need help joining Facebook or have any other questions or concerns you can contact me directly via my email: howardjglick@me.com

Please help spread the word of this group get help those in need of help.

The FTD Patient Support Group will be be officially starting Wednesday December 14, 2011

New FTD Patient Support Group

FTD Patient Support Group

I'm announcing the creation of the first FTD patient only support group. It will have a unique and unusual name. The FTD Patient Support Group will be a private group that's open to those with FTD. 

This will be a comfortable community for those with FTD.

AFTD
"This support group will be independently run by Howard Glick. The Association for Frontotemporal Degeneration (AFTD) has offered to provide information, education and resources at the request of group participants to help them understand and cope with FTD in their lives."

Association for Frontotemporal Degeneration Link -  AFTD

Having FTD is not the end of life, it is just the beginning of a different type of life. We can never return to the life we once had, but we make the best of the life we have now. Everyone has the right to to happiness and purpose in life. Just because we have FTD does not give us the excuse or the right to roll over and die.


FTD is a  progressive disease. We need to keep adapting and changing because of the changes being made to our brains. In the group we will be able to share our experiences to help one another go through these changes.


This a place those with FTD can go and be with others that can relate to your life. You don't need to be alone with FTD any longer.


The group is meant to give those with FTD a sense of belonging. People with FTD will not only be able to be part of something special, but will be with people they will be comfortable with in a pleasant atmosphere.


We can share our experiences, good and bad with the goal of making a better life for ourselves. We can also the learn the difficult task of learning how to educate those around us about FTD. It's important for those around us understand who we are and what we're going through. 


By sharing our experiences with each other all be able to reduce the amount pain we're going through in day to day life.


The FTD Patient Support group will be a group to go to laugh and to cry. To share our former lives and current life.


We will try to help each other keep a positive attitude and work around all obstacles. 


We'll figure out the best way to deal with the symptoms of FTD through our experiences and make our lives a bit easier to live.


We all have behavior/language/symptoms with cause issues. We'll learn to get over things fast. None of us is perfect. If we do something that bothers us, we need to get over it and move on. We'll try to reduce the dwelling and ruminating over things we can't control.


Start thinking of positive things we can do to enhance our lives.


We need to be aware and accept the changes in our lives. The life we were living is over. Accept it and make a better life for yourself today. We'll help each other do this.


We all have experience with meds and doctors.  Some things work for some and not others. We can share our experiences.

How to Join

You need to have a Facebook account. Once you have a Facebook account you need to "friend" me. Search on Facebook for Howard Glick. I'm the Howard Glick in the New York Subway.


Send me a message with a request telling me you have FTD and would like to join the FTD Patient Support Group. You need to also confirm that you have a firm diagnosis with a scan. I will then add you to the group.


The names of the people in the group are confidential and will not be shared with anyone. No one will be able to see or access any of the names or information on any of  the members of the group from the outside. No personal information will ever be disseminated by me.


If FTD patients need the help of caregivers to participate, they are welcome.


Vulgar language and adult situations will be tolerated. This is real to our world and as long as it is being used to vent, or used in a constructive manner that's fine.


We already have people from 3 different countries that have joined.


I will be the moderator and be monitoring the group 7 days a week.

If you need help joining Facebook or have any other questions or concerns you can contact me directly via my email: howardjglick@gmail.com


Please help spread the word of this group get help those in need of help.

The FTD Patient Support Group will be be officially starting Wednesday December 14, 2011

AFTD article on Howard Glick

Hi Everyone,

AFTD - The Association for Frontotemporal Degeneration has written a full page article about me in there quarterly newsletter. I am attaching a link to the  Newsletter which is on the AFTD Website. 

AFTD is best resource worldwide for the most accurate and up to date information on FTD. There website is extensive and always kept current with the latest news.

You can register with AFTD in 2 minutes on there home page and receive the free quarterly newsletter by email, post or both. A direct link to there website is on the lower right of this blog page.

Taking on FTD: Howard Glick
The article is on page 9
http://www.theaftd.org/wp-content/uploads/2009/02/fall-good.pdf


In the last few weeks I have received hundreds of wonderful comments through all the different social media's I engage in. Your comments keep me going and motivated. 


I also want to personally again thank Alice Walton, whose article in Forbes has helped educate and further public awareness of FTD.

Forbes article

http://www.forbes.com/sites/alicegwalton/2011/11/17/brain-ventures-a-businessmans-battle-with-a-rare-neurological-disorder/
Thank you so much for your support,
Howard Glick

FTD - Distraught Over Being Unaware

I want to thank Alice Walton for the accurate depiction of my life with FTD. 

Forbes article

http://www.forbes.com/sites/alicegwalton/2011/11/17/brain-ventures-a-businessmans-battle-with-a-rare-neurological-disorder/

The article has received much attention and has helped educate and create further awareness of FTD -Frontotemporal Dementia.

Alice recently wrote an article Forbes featuring Steve Jobs shortly after his death. Three weeks later Howard Glick is featured in Forbes. I feel like I'm in good company.


Steve Jobs was worth over 6 billion dollars. Howard Glick has $104.79 in the bank. That's all I have to my name. I believe I might be one of the monetarily poorest businessman featured in Forbes.


I might be poor, but I have a life. It might not be the life anyone would've chosen, but it's mine and I'm making the best of it.


My story is very similar to many with FTD. I got wiped out financially having the wrong diagnosis for over 6 six years.


I had a high profile job in the technology sector I loved. I worked the same product since the 80's and consistently moved up the line. I was the first outside sales rep hired to sell the Riso product line in New York City. The technology was new and the manufacturer was an unheard of Japanese company. 


99.9% of you are now saying to yourselves, "Who is Riso". (you can google to find out)


The local distributorship was an hour and half away by car. I was to work out of my apartment. My largest competitor was a little known company called Xerox.

Jobs vs Microsoft - Glick vs Xerox

Jobs out of his garage and Glick out of his apartment.

Anyone who knows me knows I love having fun. Where I do have an ego, right now I'm having pleasure juxtaposing these analogies between Steve Jobs an obvious genius and me, an accomplished businessman and known schmuck.


I  engaged Xerox like David fighting Goliath. Year after year I pounded away at them in NYC taking over school district after school district, account after account. Whereas I was like a little pesky mosquito to be swatted and consistently missed, Xerox did frequently try and recruit me to join Team Xerox. Sorry, I was loyal to Riso.


My career track advanced from distributor to the manufacturer Riso out West and I was promoted till FTD infiltrated my life. 


In the last nine years I've managed to lose almost everything a person can lose in life. I rarely see my children out of Seattle, I couldn't afford to go to my own son's Bar Mitzvah which was just at a Shabbat service - no party, I lost my career, the woman I loved and all my money. I've never been sick in my life, never been on unemployment, never needed public assistance of any kind, never been arrested and always paid my taxes. 


I also had a long term disability plan in case I got sick. I lost that being incorrectly diagnosed as bipolar. I have a superb lawyer working with my neurologist trying to get it reinstated. Dementia is covered under my plan and a SPECT scan from 2006 suggested that degeneration had begun. A 2010 PET scan has now made it clear that it was FTD manifesting itself.


Like a boxer who is down and out on the canvas, beat up and nearly dead. I have risen for one last round. I will not be denied my last shot at life.


FTD is not a terminal illness. Birth is a terminal illness. 


Until the day we are dead we have a right and a responsibility to life itself. It is up to us to make the most of every moment of every day. I will continue to help educate and further public awareness through my blog, the documentary that is now being filmed, social media, through interviews and periodicals. I will not hesitate or stagnate. Whatever it takes to get the word out, I will do. My goals are set. I am on a mission and I will not be denied.


A few days ago a close friend of mine Janet texted me at 2:45am saying she couldn't sleep and wondering if I was up. Janet has a boyfriend. 
I was up doing my meditating, clearing my mind routine when I got the message.


I replied by saying we should be having sex and describing what we should be doing and how it would help her fall asleep. What I wrote wasn't  x-rated, but well up into the R-rated category. I knew what I wrote but didn't see anything wrong with it. Janet immediately responded that I was way out of line and she was very upset. I wrote I was sorry but I really didn't believe that I did anything wrong. 


I was totally unaware of how offensive and inappropriate I was. 


It hit me a half hour later and I was devastated. I sent off email after email for the next day or so feeling terrible if not close to being crushed. Janet was shocked at the time, but understood and quickly got over it. She is one of the few people that understands FTD and can put up with me. At times I feel it might be easier not to follow anything with no self awareness or insight, like so many of my fellow FTD sufferers.  Of course I fear my condition will deteriorate and at what point does Janet and the rest of my loved one's have enough of me.

I've lost so many I've loved to FTD.

I ran into a professor I know a day later and told him the story. A good friend of his wife has FTD and is in the final stages in a facility. He is an intelligent, good natured man and he has gained my utmost respect. Subsequently after hearing my story, he told me his friends wife was at my stage when FTD started progressing very fast and she soon was totally unaware all the time of what she said. 


Of course he didn't realize the devastating effects his words had on me. I didn't say a word. 


There have been an alarming number of incidents lately. For the first time a lifelong friend, Marc Turkel found in necessary hand out an FTD awareness card asking to please pardon my behavior/language because of a Neurological Disease. We were in the office supply store Staples. I've prided myself in carrying these cards but have never needed to use one of these "Get Out Of Trouble Free Cards". Marc was in from Seattle for 3 weeks to help me with the filming and spend time with me. 

Welcome to the wonderful world of FTD.

Forbes Magazine: A Businessman's Battle with a Rare Neurological Disorder

Forbes Magazine has written an article about my life with FTD. 


Brain Ventures: A Businessman's Battle with a Rare Neurological Disorder
http://www.forbes.com/sites/alicegwalton/2011/11/17/brain-ventures-a-businessmans-battle-with-a-rare-neurological-disorder/

Forbes just added the article to their Health & Woman editions.

If you've read the Forbes article,  please look at the other articles in my blog which describe living life alone in NYC with Frontotemporal Dementia. I articulate what it's like to overcome everyday obstacles with FTD. 


Articles range from what it like to be misdiagnosed as bipolar for over 6 years to losing almost everything in life. I have also written on fighting and winning battles against depression, isolation, and the constant battle trying to survive with minimal social services.

To Whine or to Wine?

I would love to whine, but I can't. The truth of the matter is I'm not a whiner. I'm an implementer of change. 


I am lucky to have the best friends in the world who no matter what happens, will not give my an inch of slack or let me feel sorry for a myself. We love each other and we treat each other the same way since we were 5. 


I take everything one step at a time. My reality is still this:

My SSD is $1,996.00 per month.

My rent is  $1,636.00 per month (Gas & Electric not included)

That leaves my with an income of $360 per month to live in Manhattan.

My social worker assured me she could get me a rent freeze and a food stamp increase. FTD is recognized as a rare terminal disease.

My DRI rent freeze application was denied.

My appeal to the denial to the NY Housing & Finance was also denied.

A subsequent phone call from a Lawyer with NYC Housing & Finance explained to me I make to much money. She also agreed with me I would get more help from NYC if I was a substance abuser or alcoholic.

Now I just got my new lease and my rent is going up to $1,700.00. That means my income will be $300 per month. There is no cheaper rent anywhere near me. I live in Manhattan and this is the way it is.

Lets not fret over little things, after all there is the food stamp increase application.

I made $2.03 a day in food stamps or $58.00 per month.

The increase not only was rejected, they lowered my food stamps from $2.03 a day to $1.45 a day. My monthly allowance decreased from $58 to $45. At least I know that because of my sacrifice we will not have to burden the top 1% of wage earners with a tax increase.


I'm barely making it and a rent freeze and food stamp increase would have meant I could have had a small measure of stability into the future the I wouldn't be on the streets.


Never mind never seeing my teenage children who live in Seattle. I miss them.

I'm bankrupt and cannot move. There is no place cheaper in the area. I have my support systems and medical help here (Columbia Univ. Med. ctr & Columbia Presb. hospital). My friends are in the area. My neighbors and building staff help me and are familiar with my condition. My support group at Riverstone "Memory Club" is here as well .

Right now I want for nothing because of the kindness of friends. I also have a couple of things going that hopefully will bear fruit. If they don't work out than I will find another way to survive.  I am living on the edge and I hate living on the edge. 

I have FTD and my life is in total chaos and disarray because of it. 99.9% of the world thinks FTD has to do with flowers.


Guess what, I'll find a way out. I really don't care what obstacles the Universe throws at me at this point. I am going to find away out of this hole. 


I ain't heard no fat lady singing yet!


I intend to keep going till there's nothing of me left. No matter how rough each day gets I will meditate and clear my my at night. I will figure out new ways to articulate what it is like to think like an FTD'er and to keep pushing towards greater public awareness of FTD.


I will continue to go to Starbucks 7 days a week and continue the work I'm doing. At this point my intentions are to start working towards speaking engagements and motivational speaking. This is with or without my other projects that are looking promising at this point. 


I believe we are all masters of our own fate. No matter how difficult things become I will never return to the medically induced fog I was in for      
over 6 years. It may not be fair to me or others around me, but that's the way it is. This is my decision to make and I've made it. Forget the easy road. 


Besides dealing with the minor complication of FTD in my life I am involved in many online group/forums/etc. I've noticed in multiple forums people get caught up with a situation and go on harping on a topic or point. Let me pull a Seinfeld and say,"Not that there's anything wrong against joining the band and being supportive." 

One example is a recent person who was justifiably upset and wrote about it. At the end the person wrote there sorry about whining. From that point there many wonderful supportive people went on to discuss whining. Page after page after page went on discussing whether whining was okay, whether the individual was whining and that this was the place to whine if they were whining. I'm sure someone will whine about me writing about whining.


I wrote the following response and I'm publishing it because I'm involved in many groups on and off line. I feel we all need to sit back, breathe and be human. In no way am I mentioning anything that can allude directly to any group or individual.

The following was my response to multiple pages of responses to whining:

To wine or not to whine, or to whine and not to wine. that is the question? I will at anytime share a bottle of wine and whine or not whine with anyone who prefers wining over whining or whining without wining.


After reading page after page of whine or not to whine, I'm sitting here at Starbucks laughing and not whining.


FTD is a strange, elusive, devastating, and absurd type of Dementia. Then again there are people out there that will argue it's not a form of Dementia.


Hey, caregivers and fellow FTD'ers. Kick back and relax with or without a bottle of wine and enjoy life for a moment. We are all doing the best we can and deserve some laughing, crying, whining and wining. Groups can be a great release, but let us all remember we need times of levity even in groups where things get vey intense.


Sit back with your loved ones and pull out the old picture album or bring up some old fun stories. We are living and moving on. Find a way to find some happiness in your life with or without wining or whining.


Howard Glick - FTD'er who is living life with happiness and purpose

FTD - I'm in the War

I'm consistently dealing better managing the revolving door of symptoms of life with FTD.

Right now I'm taking FTD head on with no caregiver and no drugs (except Namenda) and I'm kicking ass. I am clear, lucid and can articulate well.

The symptoms are there and not going anywhere, I'm just dealing with them differently. For months I wrote about how I would come home from Starbucks at 9:30 -10am exhausted and quiet often be in bed till the next morning. I was exhausted from monitoring my behavior trying to keep my language, sexual jokes and innuendoes etc. at a minimum. 

Sometimes the home health aide would be shocked that I was so exhausted I couldn't answer any question besides what my name is. I would just stand there confused and disoriented and she would tell me to go lay down. 

My neurologist and friends told me not to worry about my language, behavior etc. I was told to stop my monitoring and over thinking because I was burning myself out. In my desire to return to the human race I discounted there advice. A few weeks ago my Starbucks buddies and staff noticed I was staying later and later or returning in the afternoons. Friends also noticed that my behavioral/language difficulties were greatly reduced.

Now it seems I'm getting close to having most of my all energy back. I still don't sleep more than 3-4 hours a night.

I just put it together a few days ago. All the monitoring of my actions and language that was burning me out was finally paying off dividends. I integrated into my life and have successfully minimized these symptoms and now I'm not needing the constant monitoring of myself. Of course I slip, but big deal.

Of course the hours of monitoring, meditation, resting, and mind strengthening exercises are helping. 

Some reports say FTD behaviors have a physical cause and cannot be controlled or minimized by the individual.

The more I find out about FTD the more I realize how much is not known. The Frontal and Temporal lobes cover half the brain. 

I frequently get contact by people whose loved one display new musical talents as there language skills decline. One woman is now mute, but started singing beautifully. Another plays organ. The list goes on. No one understands this. FTD is still an enigma.

"It is what it is" and I'm doing better. Maybe it's just a stage of FTD, but I'm doing better and I will continue to fight to improve every day. 

Does this mean I'm ready to join society being a fully functioning person, I think not. There are so many other symptoms and issues I'm dealing with it is mind boggling. Some of the most difficult and prevalent  are:

1. Not being able to put facts together and make a rational decision. This also causes my judgement to be flawed.

2. Not being able to follow conversations and phasing out in the middle of conversations. 

3. Not realizing when circumstances are changing around me.

4. Not knowing exactly what a person is meaning or intending to say while there talking to me. 

5. Saying things I regret later.

6. Constantly second-guessing myself.

7. Being aware that I'm unaware of what I'm saying and the hurt that's being done.

8. Short term memory loss.

9. Not being able to retain what I read and other cognitive issues.

I intended to write just a couple of symptoms but the list quickly grew. I stopped at 9.

My pet project right now is minimize my non-stop chatting or incessant talking. I get into these modes where I continually ramble on without stopping. It's usually about myself and I don't let anyone talk or pay attention to anyone else. There are a many issues involved in this and it is complicated.  I will get back to you on my progress. I was going to say progress or lack of progress, but to me the efforts involved in managing the symptoms of FTD are a triumph in itself.

Everyone knows how my heart goes out to caregivers, friends and loved ones of people afflicted with FTD. You go through absolute hell.

Those suffering with FTD are in a war 24 hours a day. Whether there isolated in a bedroom at home watching TV (I did that for 6 years), in a nursing home not really knowing what's happening or going on, or battling every day out in society like I'm doing, we are in a war.

I'm going to use the analogy of watching the Vietnam war on TV. We still see the old clips and say how horrible that was. Nobody though has any idea of what that soldier on the ground was going through. That's what it's like living with FTD. You can't explain it or understand it unless your going through it.

Living life with FTD is fighting a horrible war that never ends and everyone else is watching it on TV.

Living with FTD is nothing short of war.

Howard Glick 

FTD'er who is living life with happiness and purpose

The Value of Support Groups for Caregivers and Patients

Last year after I was diagnosed with FTD the Alzheimer's Association awarded me a grant so I could attend a Dementia Support Group called, "The Memory Club". The group is made up of individuals who have been diagnosed with various early onset Dementia's. I am the only person in the group with FTD - Frontotemporal Dementia.

A question was asked of me by Sharon Denny the program director of AFTD - The Association for Frontotemporal Degeneration . What is the most valuable thing I learned from Riverstone's "Memory Club".  


I took the question to the talented members of Riverstone's "Memory Club" and the upcoming list is what we thought of.


(I am truly the luckiest person in the world. As I sit here typing in Starbucks, one of the lovely barista's just came by to take my cup to give me a free refill).


Many of the answers listed below can be used in context for both support groups of both caregivers and FTD/Dementia patients.


For me, the most valuable thing I learned is number O:


0.  Find happiness and purpose in life again.

a. Everyone has a right to happiness and purpose in life. 

1.  Make subtle changes and adjustments in your routine to adjust to life with Dementia.
a. You need to learn to keep adapting to the changes made by dementia.

2.  Learning to live with Dementia in a positive way.
a. You need to keep a positive attitude  and work around all obstacles.

3.  A sense of belonging.
a. You are a part of something and feel comfortable with the people and atmosphere.

4.  Expressing our experiences to peers in an effort to minimize our problems.
a. Having others that can relate to your life and you to theres.

5.  You learn you are not alone.
a.  You might be lonely, but your not alone.

6.  Learn you can function with your crazy ways.
a. No one is perfect. Live life and enjoy. Get over things fast and move on.

7.  Life is not over, we can rebuild our lives.
a. You can have a full and wonderful life. Just different than before.

8.  Awareness of Dementia.
a. Be aware and accept the a changes in your life. You can't be happy if you keep fighting for the life you had before Dementia. You need to be aware of yourself and your life to move forward.

9.  Get a 2nd opinion,  don't necessarily trust every doctor you see because they are a doctor.
Listen to medical opinion, but don't disregard your instincts and don't think twice of seeing someone else when it comes to matters of health and wellness.

10.  A friendly, supportive, understanding environment.
a. You can breathe and relax. Better and cheaper than a psychiatrist office.

11.  We are like brother/sister.
a. You can develop new close relationships with others that understand you and you them.

12. Learn how to live, not how to die.
a. Get busy living, never give up.

13.  Dementia is a not a mental illness. Medications for mental illnesses do not necessarily work with Dementia.
a. Be extremely careful of all medications and there side effects.
b. There are no FDA approved drugs for FTD. The UCSF website has a guide to medicines for FTD.
c. Do not take Aricept for FTD.

Being diagnosed with  Dementia is a shock to the system. It's not easy being told to get ready for the end of your life.


You have a progressive terminal illness with no cure. 


You're told to make end of life plans. The only thing you can think of when leaving the doctors office is life is that I have Dementia and I'm going to die.  You are in shock and many people do not get over it. 

Caregivers and loved ones lives change drastically as well. They also have to go through the shock of there loved ones having a terminal illness. 

Support groups will help ease the pain and help both caregiver and Dementia sufferer make necessary changes in lifestyle to create a new life. 


To find a FTD support group for caregivers in your area. Check the AFTD Website for the regional coordinators. 

 The Association for Frontotemporal Dementia http://www.theaftd.org/

For caregivers of other types of Dementia's and if there is no FTD support group in your are, contact your local Alzheimer's Association.


Those diagnosed with FTD should try one of the Dementia Support Groups. They can find out where these are from the Alzheimer's Association. It was nothing short of a life changer in my case. 


Remember, you get out of it what you put into it.


It will not be the life you once knew, but it can be a life with happiness and purpose.

Dementia is not the end of life, it is just the beginning of a different type of life.


I am looking to start a FTD patient support group in Manhattan. The purpose will be to help us find happiness, purpose and to deal better with having FTD. Please contact me if you are interested.


Howard

FTD - Explaining Irrational Responses and Questions

Living daily with FTD I find myself constantly answering questions with irrational responses or asking questions that have no relevance to the topic of conversation. I'm always responding with "are you angry at me",  "Am I irritating you", "Did I so something wrong", "I did it again didn't I?". These are constant questions from someone  living with FTD. Often I'm not sure of what the person is saying or meaning. I'm not sure if they are being inquisitive, sarcastic, or critical. I have one friend who constantly tells me one thing, and then tells me he is playing devils advocate later so I never know what the hell he is trying to tell me.


People say they understand FTD and what's going on in the person's mind, but very few do. Caregivers try their hardest but it is difficult to understand how the person you are talking to sometimes understands what your saying and sometimes doesn't. It's especially difficult when you know and love the person and want to believe they understand you and you them. 


Unfortunately the world can be a difficult place with FTD being a cruel joke on one and all.


It is extremely difficult to explain that your thought process is corrupted and the effect that has on you understanding what people are saying to you. It also affects how we read facial expressions and body language.  A person can say or mean one thing and I will take it a totally different way. I constantly try and slow myself down and not answer to anyone quickly as to not misinterpret, but it's virtually impossible. When you're in a conversation and engaged with someone you need to respond to questions and comments. Circumstances are constantly changing and I find myself often without a clue of what is going on. Getting lost in the sauce is easy to do and sooner or later I will always say "What did you mean by that?" The response is usually, "Mean by what?" The person has no idea, that I have no idea, that I have no idea of what there intending to say(yes, I did say that and say that I did.) Sometimes I would say things and would be so far off base that people would just look at me and tell me I'm way off base or I have a vivid imagination. Very hurtful and frustrating for everyone.


I have been making those same comments for years now and it's simply because 1 +1 = 5. People with FTD cannot take facts and put them together to come up with a makes sense conclusion. If you say it is 75 degrees outside but will rain hard later, there is a good chance I will not take an umbrella, but will instead take a heavy trench coat.

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A person that I'm in contact with wrote a couple of weeks ago that her husband took there children out to there Church after midnight to do landscaping. He marched back in with the kids at 6am. He explained that it was cooler at night than during the day. They do not live in the desert.


I had a remarkably similar incident.


My son Myles came to visit me in NY during July and I wanted to take him to a NY Mets baseball game. The day of the game was supposed to have a thunderstorm and possible showers. The next night game was supposed to be clear but 5 degrees warmer. 1+1=7. I took him to the game with rain because it was cooler and probably wouldn't rain that much. Made total sense to me. Guess what? Myles and I had a great time dry under the grandstand while the players never even made it out to the field it was raining so hard.


What's interesting about the two incidents is the flawed thought process that brought myself and the other man to come to the conclusion that these were good decisions. These are typical examples of things that people suffering from FTD do every day. Some people think we are crazy, but we are not. 


 Our decision process is flawed and we simply cannot put facts together to make a rational decision. 


I would do anything for my son and so would the man in the Church/landscaping story. We both love our children and try to keep intact our relationship even though it might translate into what is an irrational act. 

 It was a rainout but we were determined to have a great time no matter what and Myles and I had a blast.

I'm sure the man who took his kids on the midnight landscaping foray also had a good time with his kids.

They both turned in harmless adventures that will be imbedded as harmless FTD adventures.