Comments on: The Loss of Freedom With Dementia http://hollyeburne.com/alzheimers-and-related-dementia/the-loss-of-freedom-with-dementia/ Enriching Lives, One Step at a Time Fri, 11 May 2012 03:28:28 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: hollyeburne http://hollyeburne.com/alzheimers-and-related-dementia/the-loss-of-freedom-with-dementia/comment-page-1/#comment-14 hollyeburne Tue, 14 Jul 2009 16:01:18 +0000 http://hollyeburne.wordpress.com/?p=55#comment-14 Sara, Thank you Sara for commenting on my story, and I was quite emotional when I read your story. I am very sorry about the recent passing of your Dad and it felt comforting to read about you being with him until he took his last breath. He is a lucky man to have a daughter like you. I understand when you say that few people know about FTD, and one of the many reasons that I have decided to start writing about our life, is to raise awareness in the public-even to the doctors. My other reason is to share the lessons that life is teaching us, so that other people dealing with their own challenges might learn from our perspective. I also appreciate your support and offering to answer the questions as our journey continues. It was very wise of you to comment, that when I am ready, I will ask. Little bits of the 'reality' of our future are slowly seeping in,(I think that is a good thing)and you never know, even my children (Amy-25 and Kyle-27) might ask for some guidance. Please stay in touch. Thank you. Warmly, Holly Sara,
Thank you Sara for commenting on my story, and I was quite emotional when I read your story. I am very sorry about the recent passing of your Dad and it felt comforting to read about you being with him until he took his last breath. He is a lucky man to have a daughter like you.
I understand when you say that few people know about FTD, and one of the many reasons that I have decided to start writing about our life, is to raise awareness in the public-even to the doctors. My other reason is to share the lessons that life is teaching us, so that other people dealing with their own challenges might learn from our perspective.
I also appreciate your support and offering to answer the questions as our journey continues. It was very wise of you to comment, that when I am ready, I will ask. Little bits of the ‘reality’ of our future are slowly seeping in,(I think that is a good thing)and you never know, even my children (Amy-25 and Kyle-27) might ask for some guidance.
Please stay in touch. Thank you.
Warmly,
Holly

]]> By: sara g http://hollyeburne.com/alzheimers-and-related-dementia/the-loss-of-freedom-with-dementia/comment-page-1/#comment-13 sara g Tue, 14 Jul 2009 03:46:10 +0000 http://hollyeburne.wordpress.com/?p=55#comment-13 Dear Holly My father lived for 6 years after being diagnosed with FTD. He also had primary aphasia which affected his speech. He was the bravest man I knew and I made sure he knew it. He died on June 6 @ 8:56 pm. There is so much I could tell you about his journey, but I think it best that you get the answers when you you are ready to ask the questions. Try to keep humor in you life together and focus on the things your husband can still do. Through reading your blog it seems you already do that. If you ever have a question, feel free to e-mail. Maybe I could be a little support. There are not many families or physicians who know much about this disease. I was with my father every step of the way. Sara Dear Holly

My father lived for 6 years after being diagnosed with FTD. He also had primary aphasia which affected his speech. He was the bravest man I knew and I made sure he knew it. He died on June 6 @ 8:56 pm. There is so much I could tell you about his journey, but I think it best that you get the answers when you you are ready to ask the questions. Try to keep humor in you life together and focus on the things your husband can still do. Through reading your blog it seems you already do that. If you ever have a question, feel free to e-mail. Maybe I could be a little support. There are not many families or physicians who know much about this disease. I was with my father every step of the way.
Sara

]]> By: hollyeburne http://hollyeburne.com/alzheimers-and-related-dementia/the-loss-of-freedom-with-dementia/comment-page-1/#comment-12 hollyeburne Fri, 10 Jul 2009 00:31:38 +0000 http://hollyeburne.wordpress.com/?p=55#comment-12 Hi Nina, Thank you kindly for your words of encouragement. I didn't know if I was too raw being on this new journey with FTD, but I felt called to share our life, and lessons, with the world. There is so little information on FTD and I want to help raise the profile of it. I really enjoyed clicking on your blogs-I am going to spend more time reading about your cat and chihauaua (spelling?). Great to connect with you and all the best with your aunt. Warmly, Holly Hi Nina,
Thank you kindly for your words of encouragement. I didn’t know if I was too raw being on this new journey with FTD, but I felt called to share our life, and lessons, with the world. There is so little information on FTD and I want to help raise the profile of it.
I really enjoyed clicking on your blogs-I am going to spend more time reading about your cat and chihauaua (spelling?).
Great to connect with you and all the best with your aunt.
Warmly,
Holly

]]> By: Nina http://hollyeburne.com/alzheimers-and-related-dementia/the-loss-of-freedom-with-dementia/comment-page-1/#comment-11 Nina Fri, 10 Jul 2009 00:07:49 +0000 http://hollyeburne.wordpress.com/?p=55#comment-11 Holly, You have a talent for writing, please keep it up. I have an aunt with FTD. You are right, it is underexposed compared to the other dementias, especiallly Alzheimer's. I think it is especially heart breaking because of the impulsivity issues and their repercussion associated with the atrophy of the frontal lobe. Thanks for putting a face on FTD with you and your husband. Nina Holly,

You have a talent for writing, please keep it up. I have an aunt with FTD. You are right, it is underexposed compared to the other dementias, especiallly Alzheimer’s.

I think it is especially heart breaking because of the impulsivity issues and their repercussion associated with the atrophy of the frontal lobe.

Thanks for putting a face on FTD with you and your husband.

Nina

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