Everywun Haiku

Recently through Facebook I became aware of a web site called Everywun. The mission is simply to give every person the opportunity to make a difference. Last Saturday the founder of the site posted a challenge asking people to write haikus about their cause. A fellow Lewy Body friend sent out a message asking if anyone wanted to write a haiku about Lewy. I don’t think I have written a haiku since high school, but I gave it a try. Haiku is a form of Japanese poetry – 3 lines that consist of 5 syllables in line 1, 7 syllables in line 2, and 5 syllables in line 3. You can visit the Everywun sight here. Here are the two haikus that I wrote.

Be a volunteer
Fight Lewy Body Disease
Join LBDA


Tangles in the brain
Lewy Body Dementia
Destroys those we love

Move the Cause Forward

This is the time of year that they begin popping up all over – fundraising walks. These walks have become very popular in the last few years. They are a great way to raise awareness and to raise money for worthy causes. Some people walk because a friend asks them or because they want to get out and enjoy the weather while doing something good or some people walk because of a deep seated passion.

In the past I have fallen into the first two groups, but now I fall into the last group. I still participate in other walks to support friends in their causes, but I am a woman with a passion now, a woman with a cause. Honestly, I wish I didn’t have this passion, but because of circumstances I couldn’t control I had no choice. You see in the last ten years of my mother’s life she was increasingly tortured by dementia. My family and I became all too familiar with the devastation that dementia wreaks. It is this that fuels my passion and my cause. My goal is to wreak devastation on dementia so that someday other families won’t have to go through what we went through and other people won’t have to suffer as my Mom did.

Dementia is a generic term to describe a cluster of symptoms. There are many types of dementias that have slightly different symptoms. Alzheimer’s is currently the leading cause of dementia accounting for 60% of the population of people with dementia. Lewy Body Dementia affects 20% of the population of people with dementia and Vascular dementias affect 10-20%.

This year will mark the second annual walking of the Lewy Ladybugs in the Alzheimer’s Association Memory Walk. 2009 marks the 20th year of Memory Walks in Colorado. This year’s theme is “Move the Cause Forward.” All funds raised during the Memory Walks in communities around the country go the local Alzheimer’s Associations. These groups provide support and education to their local communities.

You can find out where the Memory Walk is happening near you by visiting the Memory Walk Web Page.

GO PURPLE FOR DEMENTIA

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.