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October 19, 2006

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Mike

Hearing from a psychologist who has Alzheimer's promises to be interesting. I wish he had talked more about the day to day experience rather than the questions and issues of advocacy. I guess I need to buy his book.

Gail Rae Hudson

Whoa...well, I'm grateful to this man. The only other writing I know about by someone diagnosed with Alzheimer's is "Living in the Labyrinth". Provocative post. Thank you, too, Mona.

Mona Johnson

There are several books written by people with dementia. Two that I have on my list to check out (besides Richard's book) are Dancing with Dementia: My Story of Living Positively With Dementia (by Christine Bryden) and Just Love Me: My Life Turned Upside-Down By Alzheimer's (by Jeanne Lee). Both are available on Amazon.com.

Gail Rae Hudson

Just wanted you to know that I checked back in and was pleased that you'd responded. Thanks for the information, Mona. I've just bookmarked this post as a note to myself.

Paula

Mona - This is so powerful, it really blew me away. Thank you for posting it.

Richard Taylor

One thing we know for sure, and that is we don't know anything for sure, research wise that is. Another thing we know for sure is, this disease creates turmoil in 99.9% of the families who are dealing with it.While "bench" researchers run around chasing their molecular tails, people who are living with the disease as carers and carriers battle with themselves and each other.

When will more attention be paid to this real problem and less to the conditions of nude mice? I realize both areas need research, lots of research. In the mean time millions of people are struggling with the psycho-social consequences of the disease.

The vision of a world without Alzheimer's is compelling. Shouldn't the cries for help from people confronting it be just as compelling? There needs to be a more equitable split in research dollars between tomorrow's and today's issues.

Richard Taylor, Phd
Living with the disease for five years!

Peter Berger, Alzheimer's Weekly

Dear Mr. Taylor,

I was very moved by your most recent "Hello" letter that appeared on a number of web sites. I would like to run it with your permission on our site under the title, "Advice 101: Say Hello to Each Day". It would be a meaningful addition to our "Fight the Fight" section.

Please let me know if this would be OK. Thanks and keep up the writing! It is a big lift to many many people.

Yours,

Peter Berger
Editor
AlzheimersWeekly.com

diana

Richard, Your writings are so valuable to me. My husband who I love dearly was diagnosed 2 years ago at age 56. My adult son said the same thing as your child. I didnt see it. He was a prof.of Mech Eng. Taught a very difficult couse. Thermodynamics. The way Mr. A. is affecting his brain has left him unable to express his feelings much. He doesnt understand what has happened . He thinks he is fine and knows something is wrong at the same time. You have helped me understand his feeling in ways he cant express.Because of this I can love and understand him better. Thank you. Diana

Bettina Hackel

Hello from Switzerland!
Why did I miss this while still in Florida - South and Central - for ten years with my husband and Mr. Alzheimer as our unwanted guest.

I kept my husband Alex at home with me and our pets until he needed hospital care, that was only for the last about two months of his life. Hospital and Hospice care were excellent.

Alex seemed to be quite fine with the situation as long as I was around. He felt loved, pampered and safe, I think. He always knew who I was, and he trusted me.

BUT: had I knew and read at the time about Richard Taylor and his book - I think it is worth the whole shelf of books I've collected over the years.

Alex has peacefully passed away in Mai 2008. I still need to be comforted and understood and supported for what we went through. Finally, back in Switzerland for 2 years, I "found" Richard Taylor and his intelligent, wise, heartbraking, funny and kind words and writings. Although too late for Alex - he's at least my hero now.

Please, check out his book, his website, his newsletters - even if you still think, Dr. Alzheimer is none of your business!

Tina, Berne (Switzerland)

Kim Benoit

Dear Mr. Taylor,
I am sorry this is happening to you. Your writings on this site are very valuable to me, in that it helps me understand what my mom (now 80) is feeling, and what she has been going through for the passed maybe five or more years now. I am aware of the confusion and the struggle that must be going on inside of a person with Mr. A. and now I can truly appreciate what mom is feeling.
You are very brave for taking this on, the writings, and I intend to buy your book. If this has happened to you, a very educated man, who has continued to use your brain extensively throughout your line of work, I am left to feel that this disease has no mercy and will attack anyone, anytime. Thank you for your writings, your blog and may God bless you for your work. Your insight is invaluable to me.
Kim in Ontario, Canada

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