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Old 01-22-2004, 08:58 AM   #1
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Talking "ALZHEIMER'S" a 3 hour PBS Special


Jan. 21st, 2004
PBS airs a 3 hour special on Alzheimer's Disease.

Re: A Portrait of Alzheimer's on PBS Tonight

I recorded last nights 3 hour special on PBS. I watched what I could, (which was most of it); but, it was very hard to deal with as I cried thru most of it. I hope to copy the 3 hour special and send copies to each of my two children. As with most of society today, they do not know the extent of this monsterous disease and the heart-break that it truly causes, and to what extent. I would recommend this program to any and everyone. Alzheimer's and the pain and grief that this disease causes can, and will eventually, touch all of us........

This program airs again on Jan. 25th and 26th, in most areas.

I have been dissapointed on most "Alzheimer's" programs in the past. However, this one is the very best and the most real depiction, that I have yet seen. (And the most informative). If Alzheimer's touches your life, watch it with a box of tissues.

Gizmo
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Old 01-23-2004, 12:32 PM   #2
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Re: "ALZHEIMER'S" a 3 hour PBS Special

It aired in my area on Wednesday. I, too, cried through most of it. It really reinforces what a dastardly disease this is and what a financial crisis we will face in the next 10-20 years with the baby-boomers aging.

You WILL need a box a tissues.

Sciteach

 
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Old 01-23-2004, 01:10 PM   #3
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Re: "ALZHEIMER'S" a 3 hour PBS Special

My husband was diagnosed with early onset in Nov. 2003 (he's 59). We have no family history of AD at all -- even though he has 16 Aunts & Uncles, many in their 80s. We've been researching, but reading a book doesn't give you the true sense of the disease.

We started watching it with our 15 & 17 yr old sons (we've decided that our 12-yr old is too immature, and that we'd wait awhile before talking to her about this), but it was too hard for my husband...the boys ended up watching it upstairs. I cried through it, but it was so helpful! My sons told me that they learned a lot, and now they understand why we've been so upset. My husband said that one of the patient's description of being "blank" or having a hole where a thought would be is very accurate. He had been hopeful that new medicines were on the horizon and that a cure was imminent, based upon the encouragement of his doctors. After seeing the show, he said that he realized for the first time that any cure that is developed will be too late for him. Since he is in the very early stages, he was offended by the experts' advice on little tricks to deal with AD patients to "trick" them into behaving reasonably. He had viewed the disease as affecting memory and biological functions such as speech, but hadn't grasped that at some stage he won't be able to reason and communicate. The program has given us so much to talk about! We are fortunate that we are able to go to the Pittsburgh AD program, and have our first appointment in February.

I can't thank the families who participated in the filming of the program enough --their generosity in sharing their stories so honestly has been a real blessing to us.

Last edited by Beginning; 01-23-2004 at 06:33 PM.

 
Old 01-31-2004, 10:50 AM   #4
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Re: "ALZHEIMER'S" a 3 hour PBS Special

My wonderful, humorous, full-of-life mother, who developed severe dementia (TIA's), did not have Alzheimer's--but in many ways her illness resembled it. (The main difference, I believe, is that even when she could not function without 24 hour care--she knew what was wrong with her...and knew the family.) She got increasingly worse over a period of about 8 years...the depression being the worst of it. Her death several years ago was from bad heart disease...not the dementia. Those eight years were the worst of my life. She could describe everything she was feeling, and, a few years before she died, used the analogy of her mind as "butter, slipping through my fingers." She was in a very bad state by then--yet she spoke those words and held up her hand to show the "butter slipping through."

My twin sister and I had her in an apt. in our building, with 24 hour care those last two years. Four years later, I still remember everything she went through in such detail. Only now is it getting--thankfully--a bit more blurred.

Watching that PBS show on Alzheimer's was just about the most difficult program I've ever sat through. Only my strong need to know more about the disease kept me watching. It was the most powerful and informative presentation of just what Alzheimer's does to both the victim and the family. Particularly horrifying to me was the woman, who's emotional state switched so dramatically every two seconds....I just felt there was still a part of her brain that was aware of the horrors she was going through. It reminded me of my Mom--not the behavior--but having an awarenes that you have literally "lost your mind." I couldn't sleep that night and had to read for hours to get my mind distracted.

PBS is the first television network that has made such a "real" documentary about this disease. As one of the first of the Baby Boomers, I watched it with some real personal fear....even though at 58, all I suffer from, is a lousy memory.

Just wanted to say that I read this board every few weeks....and know how hard it is for everyone on it. The one thing that probably saved the the lives of my sister and I during that period was our very sick, dark sense of humor (inherited by our Dad, who passed away in 1977.) Many was the time we could tease my Mom--and she would laugh and hug us. The instant we walked into her apartment--and she knew we were there--she'd have a sparkle in her amazing blue eyes that lasted until the day she died. My sister and I are so thankful for that memory.

Lynn

 
Old 01-31-2004, 05:16 PM   #5
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Cool Re: "ALZHEIMER'S" a 3 hour PBS Special

I am Butch Noonan. My family was featured on the PBS special and my sister Fran was the person with white hair in a home. She was 2 yrs older than me. I have early ad. I would love to add insight to people dealing with this horrific disease. I have wonderful support from my family and good friends and neighbors. Please respond with any questions you may want to discuss.

Last edited by Butch Cape Cod; 01-31-2004 at 05:25 PM. Reason: Did not finish with my thoughts

 
Old 01-31-2004, 06:24 PM   #6
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Re: "ALZHEIMER'S" a 3 hour PBS Special

Dear Butch & Family: I have dealt with AD for 10 years w/my husband and want to tell you that the family love and support you all have is a real blessing. I, too, was fortunate in that my adult children never let me down. I also want to tell you that corresponding with EOAD patients made it so much easier to deal w/him. It's the only way we caregivers can really understand what is going on. Thank you and your family for all that you are doing.

 
Old 01-31-2004, 07:00 PM   #7
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Re: "ALZHEIMER'S" a 3 hour PBS Special

Quote:
Originally Posted by Butch Cape Cod
I am Butch Noonan. My family was featured on the PBS special and my sister Fran was the person with white hair in a home. She was 2 yrs older than me. I have early ad. I would love to add insight to people dealing with this horrific disease. I have wonderful support from my family and good friends and neighbors. Please respond with any questions you may want to discuss.
Thank you, thank you for sharing your family's story.

We don't have any other family nearby and my husband was an only child. He doesn't want to tell anyone about the diagnosis so that he can continue working and be treated "normally" as long as possible, but this is a tough secret to keep. He was diagnosed a few months ago. His speech has been impacted, and he is having trouble finding words and names for things. The speech problems have gotten much worse over the last 3 months, even though he's taking Aricept. A test showed that he can't focus on more than one thing at a time, but this isn't as obvious as the speech problem. He isn't driving anymore. At 59, we've been told that he falls into "early onset."

Our big question is how much time do we have in early stage? The doctors tell us that everyone is different and to just live each day as it comes, but we both are worried about how much time we have. The neurologist gave him a year's prescription for Aricept. We've put all the legal documents into place, but that doesn't help with lifestyle decisions. For example, we don't know whether to make significant changes in our life immediately (sell our home house and move into a condo) or whether we can wait three years until two of the kids graduate high school. We've read that the disease can take anywhere from 2 to 20 years but what is the most likely span?

We're also worried about whether his AD could have been caused by a genetic mutation, which can be carried by our children (even though none of his relatives have had AD). We'll be going through the Pittsburgh program in February, and this will be at the top of our questions.

I know this is a broad question, but do you also have any advice for him or for us?

Thank you again. We have been praying for your family since we saw the program.

 
Old 02-01-2004, 07:44 AM   #8
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Smile Re: "ALZHEIMER'S" a 3 hour PBS Special

Dear Butch -

Just last night, my twin and I were discussing you and your family.....and wished so much there was a follow-up, so we would know how you were doing. Seeing your post this morning gave my heart a total jolt--how often is life ever like that?? You ask a question--and hours later--it is answered!

You and your family have had such a long, tough journey with this illness. Although I have only two siblings (my twin sister and my younger sister), my Mom was the youngest child of 9 (four of whom died by accidents and illness by their early 20's--way before I was born.) But all my Aunts (including one set of identical twins) and Uncles--all of whom were at least in their 40's Such an amazingly close family--who sometimes lived in each other's pockets! Looking back, there was such an ocean of love....that any difficult "waves" encountered by any family members, were soon smoothed over with the help and the love of everyone. It was really a gift to have a family like that. And it seemed to me, from the documentary, that that is just what you have.

Having been so much older than I, all that family is gone now--and I just lost a 56 year old cousin from a heart attack two days ago. I miss them all.

As to the question of whether any of them suffered from late-onset Alzheimer's...we will never know, as, except for one of my twin aunts, who died at 84 (sharp as a tack)--and my Mother, who died at 86, after years of mini-strokes in the brain that left her mentally incapacitated--no one else in the family lived long enough to develop the later on-set AD symptoms.

I just wanted to tell you how strongly "attached" I felt to your family, watching that documentary. In 58 years, I have never reacted to a program so "viscerally." You have all been on my mind since the show aired about two weeks ago...in Aspen, where I was on a ski vacation. I normally never watch television, when on my annual ski trip, but had turned it on to check the weather channel to see if any good snowstorms were headed for the mountains.

If you ever wish to share how you and your family are doing, we would be very, very happy to know. (I suppose you have read that book written about 10 years ago--drat, I can't remember her name..."Friel...something?"--who wrote of her experience with early on-set AD. [removed]It was worth reading.

We send you all our very best and our wishes for happy times.

Thinking of you all, Lynn and Alice (from NYC)

Last edited by Guardian; 02-01-2004 at 08:10 AM. Reason: Posted website against board guidelines

 
Old 02-01-2004, 10:53 AM   #9
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Re: "ALZHEIMER'S" a 3 hour PBS Special

Quote:
Originally Posted by Butch Cape Cod
I am Butch Noonan. My family was featured on the PBS special and my sister Fran was the person with white hair in a home. She was 2 yrs older than me. I have early ad. I would love to add insight to people dealing with this horrific disease. I have wonderful support from my family and good friends and neighbors. Please respond with any questions you may want to discuss.
Do you believe that taking drugs like Aricept may help? My mom was just diagnosed with early stages of demesia and the doctor prescribed this medicine. I am very thankful for your help.
I would try to find a copy of this PBS special.
Take care.

 
Old 02-03-2004, 06:05 PM   #10
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Re: "ALZHEIMER'S" a 3 hour PBS Special

Every family isdifferent and every medicationn needs to be evaluated by a competent knowledgeable expert in the field. Thank you all for yourkind words. I only know my family and anyone worried about a loved one or themselves please find the closest facility to get the latest treatment. Don't forget that I have a genetic mutation which causes my disease. I am th one honored to hav e found this web sight. Sonetimes it get hard to talk with my wife because of her frars.

 
Old 02-03-2004, 06:47 PM   #11
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Re: "ALZHEIMER'S" a 3 hour PBS Special

We are honored to have you, Butch. You can talk to us anytime.

 
Old 02-07-2004, 03:11 PM   #12
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Re: "ALZHEIMER'S" a 3 hour PBS Special

[B]I too saw the show,though being a CNA for 30 yrs.I didn't feel the emotional impact most had,well I did but not crying,etc.I also have AD.I was dx 6 yrs.ago.
I was 56 when I first knew,but dx two yrs.later at 58.My husband & I talk freely about ad to anyone.............

 
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