Tuesday, October 7, 2008

Diary of Psychiatrist Physician with Lewy Body Dementia and Alzheimer's

Over the years since Mom was diagnosed with Lewy Body Dementia I have often wondered what she thought in the early days when she realized something was going on. She never really talked about it with me or my siblings and I think she talked only a little more about it with Dad. She was a very independent person who protected her family. I believe she didn’t want us to worry about her and that is why she hid it for so long.

Today I had the opportunity to visit and read a blog that is greatly appreciated. Diary of a Psychiatrist Physician with Lewy Body Dementia and Alzheimers is the blog of David Thomas, MD. Dr. Thomas is a 59 year old physician who has been diagnosed with Lewy. He has begun this blog in an attempt to share this disease from a first-hand patient prospective. He writes about his medical training that involved only the briefest mention of Lewy Body Dementia and how the diagnosis has affected him. My heart goes out to Dr. David and his wife, Pamela as they deal daily with the tragedy that is dementia. Even so, I am extremely grateful for their willingness to be open and honest.

Dr. Thomas mirrored my thoughts about blogging in that it sometimes feels self centered to write about myself and things that matter to me. Yet, his blog is not selfish, it is selfless. I wonder if I were in his shoes would I be able to write freely about what was happening. I commend him in his desire to further knowledge and offer insight and support for other Lewy sufferers.

The beginning entries of his blog detail the incidents that led to diagnosis and he has begun to share some of his deepest feelings. He describes the pain of deciding to surrender his medical license and how that affected him. His persona was largely built around his work as a physician. He put many years into his education and more years in his practice of helping others. Now, that part of him is past, although he, by writing his blog, is sharing his knowledge of the disease from a unique doctor-as-patient view point.

My mother was not a physician, but she worked many years outside the home. She volunteered and devoted herself to others. As the disease progressed she was unable to return to any kind of work outside the home. Eventually she was unable to drive. Then, slowly, she lost the ability to do the basics of everyday life for herself.

I wonder sometimes what her thoughts were when she was more aware and for periods of time understood what was happening to her. She never really talked about it. It saddens me that she felt she couldn’t share more with us, but that was the way Mom worked….she protected us and dealt with whatever life threw at her.

Reading Dr. David’s blog was hard. I want to know more about Lewy, but it devastates me as I read about others who are dealing with the disease. Dr. David is doing a noble thing by sharing. I encourage you to visit his blog. It is brand new and has had only a few entries, but already has increased awareness. He has a blog counter on the site and since he began the blog early this month it has already had over 500 hits. I regret that Lewy has given him a reason to blog, but in doing so he has put a face on the disease. That is what we need in order to fight Lewy; we need the disease to have a face and not be just some blurb in a medical text book somewhere.

Sunday, October 5, 2008

New Week, New Beginnings

A new week is beginning. It is a week full of busyness and To Do items. It's a week of a new coworker and changing of the guard with a coworker leaving. It is a week that will be so full it will almost burst at the seams.

Life seems to be that way lately. Always full, always too much to do. I often wonder how life got this way. I am not the only one who is busy. I talked with a friend yesterday who mentioned that at home she barely has time to log on to the internet to check email to connect with friends far away. We have more technology now and it should be easy to keep in touch. Yet it seems to get harder every day.

This week I am going to try to enjoy all of life despite my busyness. I am going to try to take those brief moments of beauty and enjoy them while they last!

Wednesday, October 1, 2008


October is Breast Cancer Awareness month and everywhere I look I see pink. I picked up a sales circular for an office supply store from the Sunday paper and was blasted with a jolt of pink. These days you can buy pink phones or bikes or yogurt and a portion of the proceeds support breast cancer research and awareness. The pink items are part of the fundraising done by Susan G. Komen for the Cure. In the last few years Komen and breast cancer have become closely associated with the color pink.

Don’t get me wrong, I am all for breast cancer awareness and research, but I have often wondered at how this happened. It’s amazing, really; the color pink on a product immediately brings to mind the fight against this deadly disease.

Today, Nancy G. Brinker, the founder of Susan G. Komen for the Cure was on the Oprah show. This was the first time I have really heard the story of Susan G. Komen. She was 33 years old when diagnosed with breast cancer in the 70s. Before she died she made her sister Nancy promise she would do everything in her power to fight the disease. Out of that promise grew the amazing organization that has done so much for beginning to tame this disease.

As I listened to Nancy talk about what it was like for Susan and her family as she was struggling with the disease in the 70s it struck me how much it mirrored what my family went through when Mom was diagnosed with Lewy Body Dementia (LBD.) Nancy talked about the lack of support groups, information, and understanding at the time. That is what it is like for LBD patients and their families now.

Today breast cancer is well known. Information is more abundant and because of the work of Nancy Brinker women don’t have to feel so alone when the diagnosis comes. Pink has succeeded in giving a face to this illness.

When Mom was diagnosed with LBD we found the Lewy Body Dementia Association. This young organization is working to increase research and raise awareness of the disease but we still have a long way to go. As with so many causes these days the LBD as well as the Alzheimer’s Association has taken a color to signify their fight. For the groups fighting dementia that color is purple. During recent Memory Walks for the Alzheimer’s Association purple balloons, t-shirts and banners were everywhere. For years I have been curious about how to get people to know purple like they do pink.

Today I learned how Nancy took her family's fight and turned it into a nationwide initiative. It’s a lofty thought, but as I watched I formulated ways of moving our fight into the same type of nationwide initiative. I don’t want to draw attention from breast cancer, but I do want to draw attention to the plight of dementia sufferers. In a perfect world this wouldn’t be necessary. I live in an imperfect world and so I have decided to wave my purple banner high.

Someday people will see purple and know that dementia is a horrendous disease. People will be able to purchase a purple phone or bike or yogurt and know that their money is supporting something important. They will understand that their jokes about having Alzheimer’s really aren’t that funny. They will understand and the stigma associated with dementia will begin to disappear. They will understand that others have walked this road and they don’t have to walk alone.

Today I go purple on this blog and will continue to tout purple until dementia is conquered.