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.
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
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