Comments on: Reporter's Notes: Beyond Alzheimer's http://www.kqed.org/quest/blog/2008/09/12/reporters-notes-beyond-alzheimers/ Science, Environment, and Nature in the SF Bay Area Sat, 21 Nov 2009 22:39:48 -0800 http://wordpress.org/?v=2.8.4 hourly 1 By: Matt http://www.kqed.org/quest/blog/2008/09/12/reporters-notes-beyond-alzheimers/comment-page-1/#comment-62138 Matt Wed, 31 Dec 2008 19:02:18 +0000 http://www.kqed.org/quest/blog/?p=821#comment-62138 I spent nearly four years working in an Alzheimer’s/Long Term Care facility in Utah and I know the difficulties and pains associated with caring for a loved one. I personally got to know some great people I helped care for and I also became close with some of their families. I’ve seen a lot of resources that help. One in particular seems to be a great benefit: http://www.thecaringspace.com Please pass this link along if you feel anyone could benefit from it. I spent nearly four years working in an Alzheimer’s/Long Term Care facility in Utah and I know the difficulties and pains associated with caring for a loved one. I personally got to know some great people I helped care for and I also became close with some of their families. I’ve seen a lot of resources that help. One in particular seems to be a great benefit: http://www.thecaringspace.com
Please pass this link along if you feel anyone could benefit from it.

]]> By: Alzheimer's Team http://www.kqed.org/quest/blog/2008/09/12/reporters-notes-beyond-alzheimers/comment-page-1/#comment-62043 Alzheimer's Team Fri, 12 Dec 2008 19:38:46 +0000 http://www.kqed.org/quest/blog/?p=821#comment-62043 I always enjoy your blog. I always enjoy your blog.

]]> By: JP http://www.kqed.org/quest/blog/2008/09/12/reporters-notes-beyond-alzheimers/comment-page-1/#comment-59878 JP Wed, 17 Sep 2008 10:05:44 +0000 http://www.kqed.org/quest/blog/?p=821#comment-59878 Thank you Amy. Dr. Miller diagnosed my father with FTD. Listening to your piece on NPR was a nice surprise as the media has not given this disease much attention. Thank you Amy. Dr. Miller diagnosed my father with FTD. Listening to your piece on NPR was a nice surprise as the media has not given this disease much attention.

]]> By: Amy Standen http://www.kqed.org/quest/blog/2008/09/12/reporters-notes-beyond-alzheimers/comment-page-1/#comment-59870 Amy Standen Tue, 16 Sep 2008 18:09:34 +0000 http://www.kqed.org/quest/blog/?p=821#comment-59870 Hi Mina, I know Dr. Miller is very interested in the potential for links between FTD and autism/Asperger's, though I don't believe he works on those conditions directly. You can reach the UCSF Memory and Aging Center through their website: http://memory.ucsf.edu/ Thanks for writing, and good luck, Amy Hi Mina,
I know Dr. Miller is very interested in the potential for links between FTD and autism/Asperger's, though I don't believe he works on those conditions directly. You can reach the UCSF Memory and Aging Center through their website: http://memory.ucsf.edu/

Thanks for writing, and good luck,
Amy

]]> By: Amy Standen http://www.kqed.org/quest/blog/2008/09/12/reporters-notes-beyond-alzheimers/comment-page-1/#comment-59869 Amy Standen Tue, 16 Sep 2008 18:03:01 +0000 http://www.kqed.org/quest/blog/?p=821#comment-59869 Julie, I should have thought to mention this before: UCSF has put together a YouTube channel for the purpose of edudcating people about FTD. You'll find some short clips of FTD patients there, along with doctors and caregivers describing the disease. A great resource: http://www.youtube.com/watch?v=dP4PoUkVy0U&feature=user For specific videos of Keith or other patients, I recommend you contact the Center directly. Best, Amy Julie,
I should have thought to mention this before: UCSF has put together a YouTube channel for the purpose of edudcating people about FTD. You'll find some short clips of FTD patients there, along with doctors and caregivers describing the disease. A great resource: http://www.youtube.com/watch?v=dP4PoUkVy0U&feature=user

For specific videos of Keith or other patients, I recommend you contact the Center directly.

Best,
Amy

]]> By: mina http://www.kqed.org/quest/blog/2008/09/12/reporters-notes-beyond-alzheimers/comment-page-1/#comment-59868 mina Tue, 16 Sep 2008 17:41:00 +0000 http://www.kqed.org/quest/blog/?p=821#comment-59868 Dear Amy, I was fascinated by the FDT. I have an Asperger's child and some of the social regulation irregularity is seen in Asperger's/Autistic children. I very much interested to know if there is any link with the Progranual Protein deficiency in children which results in Autism Spectrum. I would like to be in touch with Dr. Miller about this issue. Dear Amy,
I was fascinated by the FDT. I have an Asperger's child and some of the social regulation irregularity is seen in Asperger's/Autistic children. I very much interested to know if there is any link with the Progranual Protein deficiency in children which results in Autism Spectrum. I would like to be in touch with Dr. Miller about this issue.

]]> By: Julie http://www.kqed.org/quest/blog/2008/09/12/reporters-notes-beyond-alzheimers/comment-page-1/#comment-59864 Julie Tue, 16 Sep 2008 00:10:04 +0000 http://www.kqed.org/quest/blog/?p=821#comment-59864 Thanks Amy. Sure, I will have a look on Itunes, thank you. I completely understand the issues around the video clips; I just wasn't sure if these would exist seeing that they were available online anyhow? I have been searching for months! If there is any way that it could be used for teaching purposes at a Neurology Centre (I am a Neurologist) do let me know but in the likely event that this is not possible, I can direct my students and patients to your website. Not a problem either. Well done again. Really well put together, I'm sure Keith's family appreciate your work. Thanks Amy.

Sure, I will have a look on Itunes, thank you. I completely understand the issues around the video clips; I just wasn't sure if these would exist seeing that they were available online anyhow? I have been searching for months! If there is any way that it could be used for teaching purposes at a Neurology Centre (I am a Neurologist) do let me know but in the likely event that this is not possible, I can direct my students and patients to your website. Not a problem either.

Well done again. Really well put together, I'm sure Keith's family appreciate your work.

]]> By: Amy Standen http://www.kqed.org/quest/blog/2008/09/12/reporters-notes-beyond-alzheimers/comment-page-1/#comment-59863 Amy Standen Mon, 15 Sep 2008 23:20:25 +0000 http://www.kqed.org/quest/blog/?p=821#comment-59863 Hi Julie, Are you interested in the video clips of Keith Jordan? Or the slide show about artistic expression and FTD? I can certainly supply you with a CD of the radio (audio-only) piece itself -- and yes, it's avaialble on iTunes if you search for KQED Quest -- but there are likely some rights issues around the video clips. Glad you liked the piece. Amy Hi Julie,
Are you interested in the video clips of Keith Jordan? Or the slide show about artistic expression and FTD? I can certainly supply you with a CD of the radio (audio-only) piece itself — and yes, it's avaialble on iTunes if you search for KQED Quest — but there are likely some rights issues around the video clips.

Glad you liked the piece.

Amy

]]> By: Julie http://www.kqed.org/quest/blog/2008/09/12/reporters-notes-beyond-alzheimers/comment-page-1/#comment-59862 Julie Mon, 15 Sep 2008 22:19:21 +0000 http://www.kqed.org/quest/blog/?p=821#comment-59862 Excellent video Amy. I lecture on this topic and am aware that there are few, if any, videos like this available for patients, their families and professionals to learn about FTD. Will it be available as a Itunes podcast or can I avail of it / purchase it for teaching purposes? Thanks also to the Jordan/Shafer family for sharing their story. Best wishes. Excellent video Amy. I lecture on this topic and am aware that there are few, if any, videos like this available for patients, their families and professionals to learn about FTD. Will it be available as a Itunes podcast or can I avail of it / purchase it for teaching purposes?
Thanks also to the Jordan/Shafer family for sharing their story. Best wishes.

]]> By: Amy Standen http://www.kqed.org/quest/blog/2008/09/12/reporters-notes-beyond-alzheimers/comment-page-1/#comment-59860 Amy Standen Mon, 15 Sep 2008 21:24:59 +0000 http://www.kqed.org/quest/blog/?p=821#comment-59860 Thanks for writing, EAM. I appreciate the feedback. Amy Thanks for writing, EAM. I appreciate the feedback.
Amy

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