Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 HI ASHLEY YOUR MOM SOUNDS LIKE WHAT IS HAPPENING WITH MINE.. THANK YOU FOR SHARING Bayston wrote: Dear Midge, It's been exactly a year since my mother (who has probably hadDLB since at least 2000) had pneumonia and the doctors pretty much wrote her off. When we took her home from hospital they said she would be back within 60 days with another infection. She hasn't been back at all. She mainly sleeps,talks a little; mainly word salad. Like your mum, mine developed an appetite after a very long time of not eating anything. I hope it gives her pleasure. It is certainly keeping that tiny body strong and hanging on. She has been officially dying for a year. Nobody has a clue. I think it's her love for my father which is keeping her going; they have been married for 63 years and her illness is killing him day by day. Be strong Midge. Love from across the pond, > Message Received: Jul 28 2006, 09:36 AM > From: LBDcaregivers > To: LBDcaregivers > Cc: > Subject: Digest Number 3166 > > A group to provide support and information for Lewy Body Dementia caregivers Messages In This Digest (15 Messages) 1. Re: Wed 7/26 PBS Newshour Segment on AD From: Iward27663@... 2. Problems with email? From: gaat 3. Re: {Spam?} MEDS AS OF NOW FROM MIDGE From: gaat 4. Re: Filled with regret/ Courage OT From: LadySmilingAtU2@... 5. Re: QUESTION ABOUT LBD AT THE END FROM MIDGE From: LadySmilingAtU2@... 6. Re: Incontinence From: LadySmilingAtU2@... 7. Re: from Midge we have hospice From: LadySmilingAtU2@... 8. Re: Frequent Urination " early Symptoms " /Cynamyn2000 From: June Christensen 9. Re: Frequent Urination " early Symptoms " / June From: June Christensen 10. Fwd: A Poem I would like to share From: P 11. A favourite poem.......in memory of my mother who died of LBD From: P 12a. Fwd: Aricept info- Pfizer rep (insomnia+better w/Namenda) From: Robin Riddle 12b. Re: Fwd: Aricept info- Pfizer rep (insomnia+better w/Namenda) From: LadySmilingAtU2@... 13. dreams From: sissyp1102 14. Fwd: is this bowel incontinence? From: Robin Riddle View All Topics | Create New Topic Messages 1. Re: Wed 7/26 PBS Newshour Segment on AD Posted by: " Iward27663@... " Iward27663@... iward27663 Thu Jul 27, 2006 5:30 pm (PST) > Someone on the AD site said the Doctor was shown wearing a diaper, and asked > where was respect for his dignity? And, was this done without him being > unable to sign a consent form? I want to address this. > > The Doctor knew early on that he had a problem. Being a Doctor he would do > everything in his power to help others study a disease that no one fully > understands. > I am sure his health has been photographed with his consent early on, and > with his wife's consent. > > As for showing a man in a diaper, yes, it is very undignified. But, that is > the nature of the disease, and they wanted to portray just how bad it is, as > much as possible, without showing someone changing that diaper. They want > people to know how terribly undignified the disease really is. I am sure the > Doctor in the Photo visited many nursing homes, and knew what was in the future > for him. It is my feeling that He wanted to teach others. > > The show is trying to teach those that don't want to teach themselves by > doing research. Few know how bad these conditions are, with LBD being especially > bad. I hope a segment is done about that too. Education is the key to > funding. > > A case in point. A Doctor had a bad disease, and would not take any > medication, so that he could tell everything that happened in his body. How it was > effecting different body organs, and his reactions to all of it. It, too, was > filmed for future education. > > In this case the public needs to know, because the public is us! All, of us > are affected, one way or another. Baby Boomers are facing an epidemic. Need I > say more? > > > Imogene > Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with > Parkinsonism. > > In a message dated 7/27/2006 7:40:24 AM Central Daylight Time, > rriddle@... writes: > > Tonight (Wed 7/26) on The Newshour with Jim Lehrer there was the > first in a two-part series on Alzheimer's. You can get access to the > audio file from this page: > http://www.pbs.org/newshour/ > (I'm not sure how the video can be accessed.) This first part > addresses how families' efforts have spurred the private and public > sectors into action on AD. Some statistics are given: 4.5 million > Americans have AD; that number is expected to triple in 10 years; by > age 85, 50% of people have AD; and somewhere between 200K and 600K > baby-boomers have AD. Clinical and pathological symptoms of AD are > discussed in general terms along with pharmaceutical treatment and > research. Amyloid protein clumps and dead nerve cell tangles are > described. An MD who got early-onset AD in his 50s is shown, along > with his wife. I thought the portrayal of him was very > realistic. At some point in the future, the second part of the > two-part series on AD will be broadcast. It will focus on caregivers. > > Note that the Newshour segment did not mention the antibody treatment > that was in the news last week. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 HI ASHLEY YOUR MOM SOUNDS LIKE WHAT IS HAPPENING WITH MINE.. THANK YOU FOR SHARING Bayston wrote: Dear Midge, It's been exactly a year since my mother (who has probably hadDLB since at least 2000) had pneumonia and the doctors pretty much wrote her off. When we took her home from hospital they said she would be back within 60 days with another infection. She hasn't been back at all. She mainly sleeps,talks a little; mainly word salad. Like your mum, mine developed an appetite after a very long time of not eating anything. I hope it gives her pleasure. It is certainly keeping that tiny body strong and hanging on. She has been officially dying for a year. Nobody has a clue. I think it's her love for my father which is keeping her going; they have been married for 63 years and her illness is killing him day by day. Be strong Midge. Love from across the pond, > Message Received: Jul 28 2006, 09:36 AM > From: LBDcaregivers > To: LBDcaregivers > Cc: > Subject: Digest Number 3166 > > A group to provide support and information for Lewy Body Dementia caregivers Messages In This Digest (15 Messages) 1. Re: Wed 7/26 PBS Newshour Segment on AD From: Iward27663@... 2. Problems with email? From: gaat 3. Re: {Spam?} MEDS AS OF NOW FROM MIDGE From: gaat 4. Re: Filled with regret/ Courage OT From: LadySmilingAtU2@... 5. Re: QUESTION ABOUT LBD AT THE END FROM MIDGE From: LadySmilingAtU2@... 6. Re: Incontinence From: LadySmilingAtU2@... 7. Re: from Midge we have hospice From: LadySmilingAtU2@... 8. Re: Frequent Urination " early Symptoms " /Cynamyn2000 From: June Christensen 9. Re: Frequent Urination " early Symptoms " / June From: June Christensen 10. Fwd: A Poem I would like to share From: P 11. A favourite poem.......in memory of my mother who died of LBD From: P 12a. Fwd: Aricept info- Pfizer rep (insomnia+better w/Namenda) From: Robin Riddle 12b. Re: Fwd: Aricept info- Pfizer rep (insomnia+better w/Namenda) From: LadySmilingAtU2@... 13. dreams From: sissyp1102 14. Fwd: is this bowel incontinence? From: Robin Riddle View All Topics | Create New Topic Messages 1. Re: Wed 7/26 PBS Newshour Segment on AD Posted by: " Iward27663@... " Iward27663@... iward27663 Thu Jul 27, 2006 5:30 pm (PST) > Someone on the AD site said the Doctor was shown wearing a diaper, and asked > where was respect for his dignity? And, was this done without him being > unable to sign a consent form? I want to address this. > > The Doctor knew early on that he had a problem. Being a Doctor he would do > everything in his power to help others study a disease that no one fully > understands. > I am sure his health has been photographed with his consent early on, and > with his wife's consent. > > As for showing a man in a diaper, yes, it is very undignified. But, that is > the nature of the disease, and they wanted to portray just how bad it is, as > much as possible, without showing someone changing that diaper. They want > people to know how terribly undignified the disease really is. I am sure the > Doctor in the Photo visited many nursing homes, and knew what was in the future > for him. It is my feeling that He wanted to teach others. > > The show is trying to teach those that don't want to teach themselves by > doing research. Few know how bad these conditions are, with LBD being especially > bad. I hope a segment is done about that too. Education is the key to > funding. > > A case in point. A Doctor had a bad disease, and would not take any > medication, so that he could tell everything that happened in his body. How it was > effecting different body organs, and his reactions to all of it. It, too, was > filmed for future education. > > In this case the public needs to know, because the public is us! All, of us > are affected, one way or another. Baby Boomers are facing an epidemic. Need I > say more? > > > Imogene > Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with > Parkinsonism. > > In a message dated 7/27/2006 7:40:24 AM Central Daylight Time, > rriddle@... writes: > > Tonight (Wed 7/26) on The Newshour with Jim Lehrer there was the > first in a two-part series on Alzheimer's. You can get access to the > audio file from this page: > http://www.pbs.org/newshour/ > (I'm not sure how the video can be accessed.) This first part > addresses how families' efforts have spurred the private and public > sectors into action on AD. Some statistics are given: 4.5 million > Americans have AD; that number is expected to triple in 10 years; by > age 85, 50% of people have AD; and somewhere between 200K and 600K > baby-boomers have AD. Clinical and pathological symptoms of AD are > discussed in general terms along with pharmaceutical treatment and > research. Amyloid protein clumps and dead nerve cell tangles are > described. An MD who got early-onset AD in his 50s is shown, along > with his wife. I thought the portrayal of him was very > realistic. At some point in the future, the second part of the > two-part series on AD will be broadcast. It will focus on caregivers. > > Note that the Newshour segment did not mention the antibody treatment > that was in the news last week. > > Quote Link to comment Share on other sites More sharing options...
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