Traveling To Those Who Cannot
Donation protected
FTD Patient Support
I was diagnosed 2 years ago with a terminal neurodegenerative brain disease, frontotemperal degeneration. I am now 57 years old. FTD strikes people as young as 30, but most often in their 40-50's. Unlike Alzheimer's, FTD attacks a persons personality, executive functioning skills, speech and thereby abilty to work. The progression is different in every person but doctors are saying 4-10 years. For me, I have also the subgroup of PPA or Primary Progressive Aphasia. This affects my ability to find common words, slurred speech and the possibility that one day I may no longer be able to speak. I am fortunate to have a speech generating device. People with FTD are very aware that they are becoming unaware.
I occupy my time advocating and teaching people about early onset dementia, hoping to break the stigma of an older person sitting vacant in a chair. That day may come, but until then, it is my goal to change that mindset.
I also participate in on-line FTD/dementia support groups. I have met people living with this same diagnosis, from all over the world. We have all become like family to one another. Learning, laughing and crying together. We understand one another. These wonderful people are what bring me to my request...
I want to travel to each of these wonderful friends, spend face time with them, hug them. We validate and comfort one another. Our friendships are acutely profound. The memories we make are some of my most memorable!
There are support groups for care givers. There is respite provided for care givers.
There is no money for patients helping patients. I cannot cure, but I definately care! Please help me with my goal to reach my friends.
I was diagnosed 2 years ago with a terminal neurodegenerative brain disease, frontotemperal degeneration. I am now 57 years old. FTD strikes people as young as 30, but most often in their 40-50's. Unlike Alzheimer's, FTD attacks a persons personality, executive functioning skills, speech and thereby abilty to work. The progression is different in every person but doctors are saying 4-10 years. For me, I have also the subgroup of PPA or Primary Progressive Aphasia. This affects my ability to find common words, slurred speech and the possibility that one day I may no longer be able to speak. I am fortunate to have a speech generating device. People with FTD are very aware that they are becoming unaware.
I occupy my time advocating and teaching people about early onset dementia, hoping to break the stigma of an older person sitting vacant in a chair. That day may come, but until then, it is my goal to change that mindset.
I also participate in on-line FTD/dementia support groups. I have met people living with this same diagnosis, from all over the world. We have all become like family to one another. Learning, laughing and crying together. We understand one another. These wonderful people are what bring me to my request...
I want to travel to each of these wonderful friends, spend face time with them, hug them. We validate and comfort one another. Our friendships are acutely profound. The memories we make are some of my most memorable!
There are support groups for care givers. There is respite provided for care givers.
There is no money for patients helping patients. I cannot cure, but I definately care! Please help me with my goal to reach my friends.
Organizer
Susan Suchan
Organizer
Tulsa, OK
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