For anyone touched by this disease in any way. The book is entitled "Life In the Balance" by Dr. Thomas Graboys.

Here is the Amazon.com description:


Product Description

At the age of 49, Dr. Thomas Graboys had reached the pinnacle of his career and was leading a charmed life. A nationally renowned Boston cardiologist popular for his attention to the hearts and souls of his patients, Graboys was part of “The Cardiology Dream Team” summoned to treat Boston Celtics star Reggie Lewis after he collapsed on the court in 1993. He had a beautiful wife, two wonderful daughters, positions on both the faculty of Harvard Medical School and the staff of Boston’s Brigham and Women’s Hospital, and a thriving private practice.
Today, Grayboys is battling a particularly aggressive form of Parkinson’s disease and progressive dementia, and can no longer see patients or give rounds. He is stooped, and shuffles when he walks, the gait of a man much older than his 63 years. Despite the physical, mental and emotional toll he battles daily, Graboys continues his life-long mission of caring for the world one human being at a time by telling his story so that others may find comfort, inspiration, or validation in their own struggles.
This is an unflinching memoir of a devastating illness as only a consummate physician could write it. One can’t help but imagine what Dr. Graboys, the healer, would say to Tom Graboys, the patient—a face-to-face scene imagined in this inspiring book. In his joint roles, Thomas Graboys finds a way to convey hope, optimism and an appreciation of what it means to be truly alive.


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You can find a TV interview with Dr. Graboys at:
http://wbztv.com/video/?id=48204@wbz.dayport.com

There was also an interview the next night with the doctor and his caregiver wife. I can't easily find a direct link to that but you can probably dig around.

I missed the interview with his wife. I would have liked to have seen that.

Tiffany

Dig around on that website to see if you can find it. I believe it aired on 12/12/07.

Below is a link to another interview. Directly under the words
RECENT SHOW click on 'listen to the replay'

http://www.healthtalk.com/live/index.cfm

Lorraine

Lorraine,

Thanks for the link to the hour-long interview.

One part that I found interesting was towards the end where he talks about his relationship with his caregiver wife.

His parting suggestion to anyone dealing with LBD is "Don't go it alone."

Robin

Someone did find the WBZ-TV interview with the caregiver wife Vicki. It's at:
http://wbztv.com/video/?id=48372@wbz.dayport.com

And a local support group member forwarded me a link to this 18-minute radio interview Dr. Graboys did last Thursday (4/10):
http://www.wnyc.org/shows/lopate/episod ... ents/96594
Life with Parkinson's Disease
The Leonard Lopate Show, WNYC New York

I just finished reading Life In The Balance. It was marvelous. I am so glad he didn't sugar coat it and said it the way things are in this horrible disease. I wish him the best of luck on the Namenda; my LO couldn't take it. Ron is one of the unfortunate patients with LBD who can handle very few meds. He is in the advanced stages and we have very few days that are considered good. We do have some hours and minutes. We do enjoy them.
For you who haven't read the book, it is worth the money and time to do so. I am encouraging all my children and close friends to read it, so, maybe they will understand more about this disease.
Blessings to all with LBD and their families.
maryangela

Ditto -- I bought the book after learning about it here and have really appreciated it (a quick read). Debated about reading parts to Jerome, and finally did. He was so pleased that I did so. We will be reading bits each day as he says it makes him realize he is not alone going through this, that his feelings about LBD are normal, and that his frustrations (including sexual) are to be expected. So apart from getting the book for yourself, you may want to share parts of it with your LO. I'll be eager to watch the interviews with Jerome. Thank you ... I never would have come across the book had you not pointed it out here.

I wish I could hand a copy to every health care provider I encounter on this journey. If anything, the book is so good about emphasizing the importance of "good doctoring". Something greatly lacking in our managed care society.

Haven't read it yet, but am looking forward to it. To those like me who are watching pennies, I have found that our city's library has a copy and have am on the waiting list.

I received this update today about a Monday (6/16) interview with Dr. Graboys and an upcoming (6/25) Good Morning America interview of Dr. Graboys:


To: LBD Support Group Leaders
From: LBDA Support Group Coordinator

A couple days ago on June 16, 2008 from 11-12 pm ET, there was an radio interview on the Boston, Massachusetts NPR station WBUR with Dr. Thomas Graboys, a prominent cardiologist who has LBD. The reason for the interview was to discuss his new book: “Life in the Balance: A Physician’s Memoir of Life, Love, and Loss with Parkinson’s Disease and Dementia”. In the interview he discusses his experience with both PDD and LBD. I thought you and members of your group might want to listen to it.

Here’s the link.
http://www.onpointradio.org/shows/2008/ ... b_main.asp

It is 45 minutes long. (I set it up on my computer to play and did other work while I listened to it.) After about 11.5 minutes, there is a few seconds of music, followed by a Q&A session for the rest of the interview. At about 27 minutes there is also a few seconds of music and then the Q&A continues. I mention this only so you won’t think you are at the end of the interview.

Since the interview took place just this week, I wanted to send it to you so you can share this link with your group members. The interview will be going up on the LBDA website, but I am not sure when.

I understand that Dr. Graboys will be on Good Morning America, on Wednesday June 25, 2008. However, I do not know what time during the show he will be on. You may want to tune in or if you can’t tune in, then tape it. If I learn further details about the time he will be on, I will sent this information to you. Thanks.


Here's some info on the WBUR website about this segment:
The Doctor's Own Parkinson's Disease
Aired: Monday, June 16, 2008 11-12PM ET
By host Tom Ashbrook

When actor Michael J. Fox was diagnosed with Parkinson's disease, the whole country took notice. When Dr. Thomas Graboys got the news, it was -- as for most of the thousands of Americans hit with Parkinson's every year -- a more private affair.

Graboys had been a tip-top doctor. Cardiologist to the stars. Now he was being tipped onto the Parkinson's path, where tying your shoes is a major challenge.

Tremors. Dementia. Dependence. From power to powerlessness. Now, while he still can, he's telling that story.

This hour, On Point: The doctor's own Parkinson's disease.

Guests:
· Dr. Thomas Graboys, diagnosed with Parkinson's disease and dementia, he is professor of medicine at Harvard University, a senior physician at Brigham and Woman's Hospital, president emeritus of the Lown Cardiovascular Research Foundation, Nobel Prize-winner and co-author (with Peter Zheutlin) of "Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia"
· Vicki Baker-Graboys, CEO of "Su Casa Designs," an interior decorating firm
· Dr. John Growdon, director of memory and movement disorders at Massachusetts General Hospital and professor of neurology at Harvard Medical School.


Robin's note: This is one of the best interviews of Dr. Graboys. The host notes that Dr. Graboys is continuing his "doctoring" through writing this book and talking so openly about his disorder. The wife Vicki talks about cognitive fluctuations. The Mass General MD who treats Dr. Graboys mentions that the LBD started with a depressed mood.

Local support group member Helen (who is also a member of the Forum) emailed me tonight about this interview and book:

"I just finished listening to the interview - excellent. I can't stress enough how important it is to listen to the entire thing. Some may be put off by his reference to physician assisted suicide and he really recovers from that and offers hope.

I've purchased 2 copies of the book and have read it. It's an intimately personal and compassionate view of the disease. I particularly like the section on his health care providers and how an educated patient perceives he should be dealt with."

Thanks for the interview link. The book really took me to a whole new level of understanding about what goes on in the head of someone affected by the diseases. I read certain sections aloud to Jerome, knowing that he would be amazed and comforted by the fact that someone else was experiencing and feeling the same things that he is. I will be sharing the interview with Jerome as well. Again, many thanks!

Renata,

And be sure to check out Good Morning America next Wed 6/25! Some in our support group have mentioned this to friends and family as well.

I don't know if I've mentioned it before, but I love your idea of reading this book to Jerome!

Robin