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.