I sent out an email to friends a couple weeks ago with the links to this family's story as related on NPR from 1999 to 2010. I think you'll all find it interesting if you haven't already heard it. Joan has a link on the main page which you can use. Since I haven't seen this mentioned in the message boards, thought I'd bring it up here as it is such a valuable resource.
I'm copying my email below as it has the links to each story for those who might find that helpful or just go to main page here to bring up his latest entry. The previous ones are linked on the left side of page.
I'd like to recommend to those interested in Alzheimer's or other dementias a really wonderful NPR series about Tom Debaggio and his family which NPR did beginning in 1999 and following up periodically over the years. "Losing My Mind" was one of the first books I read written by Tom Debaggio who had an herb farm in Northern Virginia and developed Early Onset Alz at age 57. He has writen others. I've checked frequently for an update and wondered if he was still alive and this morning I discovered there is a new entry from June 10 of this year. He is now in a nursing home but was at home for most of the time.
In the early days after Hal's diagnosis I listened to these over and over to try to understand what might be going on in Hal's mind as he was reluctant back then to talk about it and also for glimpses of how his wife was handling it. I took a great deal of comfort in learning through his book that she was awake until 4:00 AM most times so I felt a lot less alone in my sleep issues.
This series can be read online or listened to on your computer or saved to your IPOD. I recommend beginning with the first one. I've provided the links below. This is the personal story of one man and his family, not a medical text or how to book.
The pieces are I believe under 10 minutes each and I can't recommend them too highly. Tom Debaggio Alzheimer's Journals
pt. 1 (Dec 1999) http://www.npr.org/templates/story/story.php?storyId=1068189&ps=rs
pt. 2 (March 6, 2000) http://www.npr.org/templates/story/story.php?storyId=1071675&ps=rs
pt. 3 (July 11, 2000) http://www.npr.org/templates/story/story.php?storyId=1076522&ps=rs
pt. 4 (November 22, 2002) http://www.npr.org/templates/story/story.php?storyId=1114438&ps=rs
pt. 5 (May 19, 2005) http://www.npr.org/templates/story/story.php?storyId=4658784&ps=rs
pt. 6 (May 20, 2005 (CARING FOR HUSBAND) http://www.npr.org/templates/story/story.php?storyId=4660757&ps=rs
pt. 7 (April 12, 2007) http://www.npr.org/templates/story/story.php?storyId=9538242&ps=rs
pt. 8 (June 10, 2010) http://www.npr.org/templates/story/story.php?storyId=127857149 the last one recorded this past week: A Decade of Alzheimer's..." If you bring that page up on your screen you will see a list of the others in chronological order which I've provided above.
I forgot to mention that one of the interviews is with his wife on how she was coping with Tom's AD although she does chime in on some of the other interviews also.
I cut and pasted the info you provided above and goggled...all I got was this information didn't match anything. Can you please tell me if there is another way to read this online. Thanks
I just cut and pasted the first two urls I provided above and they took me right to the site. Cut and paste beginning with the http:// and make sure you get the entire url which begins with http and ends with either "rs" or a number.
Another easy way to get to the series is to go to the main page of this site (thealzheimerspouse.com) and scroll down to Joan's link titled something like TOM DEBAGGIO 10 YEAR JOURNAL. That will take you to the latest interview. That page will also have links on the left side of the interviews from 1999-2010.
For anyone googling, I think "Tom Debaggio NPR" should bring it up also.
Good luck. This series is so moving and informative I hope everyone listens to it. And more importantly, it's a good way for friends and family to get some first hand information which doesn't come through US. Which may be an easier way for them to understand.
Anyone else out there listen to this? I'd really like to hear some comments on it. It's so rare to be able to hear in a person's own voice their progress through AD over 10 years and since this guy is a writer he expresses himself so well in the early stages. And his wife and son both share also so you can see how the journey affects them also. His first book Losing My Mind is also a good read although a bit dark.
Just listened to it. It was very good. I did like that they pointed out the anger and irrational was part of the disease. They were very frank about his repeating, his anger, getting lost, not finding the bathroom, etc. I don't think I have heard the public talk much about the nitty gritty like that.
sad...sad....sad It was interesting that he was so aware of his problems. My husband is totally unaware of his. I guess it depends on which parts of the brain are affected and in which order.
It was definitely "nitty gritty" as you put it. In one of the later ones in the series when the reporter visited them in their home I was surprised they taped the wife giving him a shower with all his shouts of protest. Very raw. I really saw my DH in him in some of the early ones when he sounded so upbeat talking about the positive side of the AD like people hugging him more and stuff like that. DH has gotten much funnier I think since AD. Also he broke down crying a couple times and they talked about his emotionality. I remember DH starting to cry at movies which I thought was just his aging but now I see this was one of the early symptoms.
Mary, Tom DeBaggio was also diagnosed at age 57 at an early stage in the disease. Perhaps your DH was further along? My DH is also aware and has been. He doesn't talk about it much and in the beginning not at all but it's heartbreaking when he does. The other night at dinner he kept trying to explain something he's seen on MSNBC, his favorite non sports channel, and he just couldn't "get to it." So, he said, "I think I should just eat and not try to think." Heart breaking to hear a former scientist say something like that.
I used Tom DeBaggio's nursery in Arlington, VA, many years ago and talked to him several times about various plants. Later I saw his first book at the library and read it.
The above was before I realized that my husband was on the same path.
Now I am trying to get up the nerve to place my husband.
I was particularly interested to see his wife's comments about Tom being an 'it'. They are here bodily, but not really.
noahcam2, we lived in Northern Virginia for 25 years and moved out here to Northwest Arkansas after DX in 2007. Her "it" comment was in the last interview after his placement and was very unlike her. I think she surprised herself with it and in the taped interview discusses that remark a bit.