A Powerful Video

from the Alzheimer's Association

I just quickly wanted to share this video with you all. I think it is quite powerful and shows the main facts and figures of Alzheimer's Disease. It makes me cry every time. Please share it with others so they know how this disease affects our nation.

Alzheimer's Facts and Figures video, by the Alzheimer's Association.

Blessings,

Rev. Katie

Our Task This Week

Photo by Jeff Norris

I had a great time this past Saturday being a panelist for "Taking on Alzheimer's: A National Conversation at Home" which was put on by the Daughters Club of the Alzheimer's Association Cleveland Chapter.  I will be writing much more about the wonderful event later.

However, I wanted to let you know that Angela Geiger, one of the editors of The Shriver Report and our moderator for the discussion, gave us all a task. A task that I want to pass on to you all as well.

Ms. Geiger asked us all to talk to five people this week about Alzheimer's disease. Five people who we have never talked with about Alzheimer's before. 

The best way to increase awareness and get the nation to respond to the Alzheimer's crisis is for all of us to talk about it.

So, let's all find five people this week and spread the message that together, we can end Alzheimer's disease.

Post in the comment section if you were able to talk to five people, then we can really show this task being put into action!

Blessings,

Rev. Katie

Bloggers Make a Difference

I have to admit, I never really paid much attention to blogs until I started thinking about writing one a year ago. Since that time I have found many wonderful resources on all different topics from bloggers all over the world. Since starting my blog, I have come in contact with many different people and it seems like I keep coming across others who are doing things to help in the cause of dementia and Alzheimer’s. Sometimes I find these people in unexpected places.

Those of you who know me know I have a thing for makeup, particularly bold colored eyeshadow. On a beauty blog which reviews such makeup (Phyrra.net), I clicked on a link to the jewelry Phyrra was wearing. Looking through the Etsy shop, I found “Wear the Lilac for Alzheimer's” jewelry.

I think it is amazing the ways people use their gifts and talents to help with a cause they feel called to support. I contacted Kelly of Whimsy Beading to find out how she thought of this fundraiser and why she is doing it. I discovered she was inspired by an author, Terry Pratchett, who announced he had early onset Alzheimer’s.

Wear the Lilac Necklace, photo from Whimsy Beading

Here is Kelly’s story of why she makes her beautiful lilac jewelry of which she donates the proceeds to the Alzheimer’s Association and the Alzheimer’s Research Trust in the UK:

“The Wear the Lilac for Alzheimer's fundraiser started in 2008, not long after Sir Terry Pratchett's announcement in March of that year that he had donated 1 million USD to the Alzheimer's Research Trust UK.

Before then, like many of Pratchett’s fans, I "wore the lilac" on May 25th as a reference to the events in the novel Night Watch. Lilacs are not common in my part of the US on May 25th, it's too hot for them to bloom. So, I started making lilac pins out of silk lilac blooms for myself and other local fans and giving them away.

After hearing of Sir Terry's donation, I wanted to do more than that. So I approached some of my online fan communities and asked if they would be interested in purchasing a lilac pin if they knew the entire proceeds of the sale would be donated to Alzheimer's research both in the US and in the UK. The fandom's reaction was very positive and so I set up the Wear the Lilac for Alzheimer's page on my paid photo hosting site.

In the first year, Wear the Lilac for Alzheimer's donated over $1,000 to the Alzheimer's Association and the Alzheimer's Research Trust UK. The next year, another $350.00 was raised. This year on May 25th 2010, $770.00 was donated and we will make a donation each May 25th thereafter.

I don't lay claim to being the first person to "wear the lilac." That honor is Sir Terry's alone. I also don't lay claim to being the only person to associate the two events - wearing a lilac blossom/clothing and showing support for Alzheimer's research. But I do lay claim to starting the Wear the Lilac for Alzheimer's fundraiser and being at the start of the "grassroots fan campaign" that hopefully has helped those suffering from Alzheimer's and their loved ones.

On a personal note, Alzheimer's has touched my life as well. At the first of this month, I lost my beloved "adopted" grandmother, a woman who has been a large part of my life to a combination of mid-stage Alzheimer's and stomach cancer. So, the work that Wear the Lilac does is in honor of not just Sir Terry (who I could never honor enough if I tried) but her.

In 2009, we made a one-off necklace to raise more funds. In 2010, I started selling the current line of "Wear the Lilac" jewelry as well as the lilac pins. I also started donating part of the proceeds from other Discworld inspired jewelry from our shop to the Wear the Lilac fundraiser.

So far, $2,200 has been raised by the Wear the Lilac charity items. Considering that it's done with a maximum of two people involved, that's pretty good. Not anywhere near a million USD, but we do what we can.”

Trevor Project Necklace, photo from Whimsy Beading

I also want to mention that she has items to support The Trevor Project which works to end suicide among LGBTQ youth by providing life-saving and life-affirming resources such as a suicide hotline for gay and questioning youth.

I will be supporting Kelly's efforts in donating to these two causes which are so important to me. 

I am seeing how the blogging community can make a difference, especially if we work together to support each other’s efforts.

If any of you know others who have fundraising or other projects going on for Alzheimer's disease, dementia, or Parkinson's disease, please let me know!

Blessings,

Rev. Katie

What Will It Take?

The Alzheimer's Association Logo

What will it take for Alzheimer’s and dementia to get the attention it needs? What will it take to raise awareness and obtain funding? What will it take for purple to represent November like pink represents October for breast cancer month?

My family and I went to a program put on by The Daughter’s Club of the Alzheimer’s Association Cleveland Area Chapter tonight entitled “A Nation Responds to the Alzheimer’s Crisis.” This was a great program with speaker Robert J. Egge, the Alzheimer’s Association’s Vice President of Public Policy and Advocacy. He gave a compelling and easy to understand talk about how Alzheimer’s is a national crisis and the things we need to do to combat it. He had many great points this evening, and there are a few I would like to highlight.

First he said that we have, for too long, talked around Alzheimer’s and what the disease is like instead of being honest about what happens. He said, “Alzheimer’s disease incapacitates and then it kills.” Until people start to know the severity of the disease, they will not want to work for a cure.

He also talked about how by 2050, because of the Baby Boomer generation, Alzheimer’s disease will increase substantially. (for facts and figures, see my previous post The Future of Alzheimer’s). But, what really hit home for me is that for every one of us, if we live to be 85 years or older, we have, on average, a 42% chance of getting Alzheimer’s. That is if you have no preexisting indicators for the disease then the percentage goes up. This is a disease that affects almost half of the population who lives to be 85 or older. Do people understand that every single one of us, after age 85, has a 42% chance of getting this disease? That is a huge risk, and many of us are living well into our late 80’s.

We also saw statistics for the death rates of different diseases from 2000-2007. Death from HIV has gone down 22%, death from breast cancer has gone down 3.1%, and death from stroke has decreased by 8.9%. However, death from Alzheimer’s has INCREASED 50.6%.

And finally, for those of us who are concerned about the financial burden this disease puts on our nation, if we figured out how to just delay the onset of Alzheimer’s by 5 years, we could decrease what we spend on the disease by 50%.

These all seem like pretty compelling facts as to why we need to raise awareness and put a lot of funding into research.

Most compelling to me though is hearing the stories of people who live with dementia and the stories of how dementia affects the patients loved ones. It is a devastating  illness where the patient looses everything about who they are. They lose their memories, and often even their personality. The sweet father you once knew can become an angry, volatile man who does not recognize you anymore. People die knowing nothing of who they are or what their life was like. That’s why we need to fight to end this crisis.

I am so thankful for the Alzheimer’s Association and all the wonderful people we met this evening who are willing to work together to make a difference. It gives families like us hope and patients like my Mom the knowledge that people care about her.

What can you do right now, right this second? Sign up at HERE with the Alzheimer’s Association to be an advocate and they will send you monthly updates on how we can make a difference.

Blessings,

Rev. Katie

November: National Alzheimer's Disease Awareness Month

Photo from Scene

Despite being relatively in contact with what is going on in the world of Alzheimer’s/dementia, I did not know until a few days ago that this month is National Alzheimer’s Awareness Month. This tells me that we defiantly need more publicity around this disease and I hope one day this month will be as recognizable as breast cancer awareness month.

So, in an effort to get more information to everyone, I have a few resources for you. There are links to these events below.

First of all, I live in the Cleveland area of Ohio so let me fill you in on what is going on here. If you drive downtown, you will notice that the top of the Terminal Tower is purple for Alzheimer’s awareness. Spread the word to your family and friends about what the color of the Terminal Tower means. Also, there is an event next Tuesday, November 9 called “A Nation Responds to the Alzheimer’s Crisis” which sounds like a great program highlighting what needs to be done to address the Alzheimer’s crisis, which I wrote about in a previous blog post.

For people who are in their 20’s and 30’s, there is an event on Thursday, December 9 at Shula’s 2 called “Party for a Purpose.” I think this is a wonderful idea because not only does it raise awareness, but it does it in a way that gets the younger generations involved. I am 31 and rarely meet people my age who have a parent with Alzheimer’s. Many people my age do not really know the details of this disease. Nor do they know that there are many things we can do now to delay the onset of dementia or even just keep our bodies and minds in the best shape possible so when we are older we do not have a multitude of health problems that make our last years or decades harder to handle. Events like this can help us care for ourselves and others better, and have compassion for people dealing with this disease.

"A Nation Responds to Alzheimer's" featuring Robert Egge, Vice President of Public Policy and Advocacy for the Alzheimer's Association Tuesday, November 9  at the Visiting Nurse Association Click here for more details and RSVP to Vicki at vicki.winner@alz.org or 216.231.1332.

Alzheimer’s Association Invites Clevelanders in their 20s & 30s to Party with Purpose Thursday, December 9 Shula’s 2 6200 Quarry Lane, Independence, 44131 Join other Clevelanders in their 20s and 30s in this swanky bar and restaurant for a festive night of appetizers, drinks and great conversation. Please bring an item to donate to a local Alzheimer’s facility. Your purposeful donations will make special holiday gifts to those in need. RSVP on Facebook or contact Sheryl Berman at sheryl.berman@alz.org or 216.231.1466.

There are other events coming up in our area throughout the year, such as the Memory Walk each October. I want to thank Sheryl Berman, the Special Events Coordinator for the Cleveland chapter of the Alzheimer's Association for giving me this information. I am sure she will keep me posted on what is going on and I will forward the information to you all.

For those of you not living in the Cleveland area, you can find out what your city is doing for National Alzheimer’s Disease Awareness Month by visiting the Alzheimer’s Association homepage and entering in your zipcode.

Together we can raise awareness, look for a cure, and help care for one another.

Blessings,

Rev. Katie

The Future of Alzheimer's

“Our government is ignoring what is likely to become the greatest threat to the health of Americans: Alzheimer’s disease, an illness that is 100 percent incurable and 100 percent fatal. It attacks rich and poor, white collar and blue, and women and men, without regard to party.” This quote is from a great article in the New York Times today called “The Age of Alzheimer’s,” written by Sandra Day O’Connor, Stanley Prusiner, and Ken Dychtwald. It is a wonderful overview explaining the increase we will see in Alzheimer’s over the next twenty years, and why we need to increase funding for Alzheimer’s research.

The article points out that for every penny the National Institutes of Health spends on Alzheimer’s research, we spend more than $3.50 on caring for people with Alzheimer’s. As the baby boomers reach 65 years and older, more than 10,000 people per day are at increased risk of Alzheimer’s.

I know in my Mom’s lifetime, there will most likely be nothing that will be found to cure her dementia, but if we start giving more money to research we can create a better future for the potential 13.5 million people who will get Alzheimer’s by 2050. My Mom hopes for a better future for these people than the future she was given.

Mom watched her mother live with and die from Alzheimer’s disease thirty years ago. In those thirty years we have made very little advances in the cure of this disease. I know Mom does not want her children, who genetically have an increased risk of Alzheimer’s disease, to go through what she is experiencing. She has committed to donating her body to science after she dies so researches can have more of a chance to combat this disease.

An increase in funding requires a mass movement of people demanding that Alzheimer’s research become a priority. It will entail legislation which will increase the annual federal contribution to research, such as the bill which is in front of Congress right now, S 3063: National Alzheimer’s Project Act. For more information on how you can help pass S 3063, go to this page of the Alzheimer’s Association website. You can find out if your member of congress supports the act and find ways to contact him or her.

Blessings,

Rev. Katie

Quote of the Day

“A diagnosis of Alzheimer's terrifies me. However, my family and friends act as though I have the flu. I've sent them sites from the web, pamphlets, books, etc. No one reads them. No one talks to me about my feelings.”

- Alzheimer's Association, Town Hall Meetings Report

Quote of the Day

"A theme that extended to almost every area of focus illuminated during the Town Hall Meetings was a reported stigma associated with Alzheimer's and the effects on those living with the disease. The impact of stigma was very present in discussion about symptoms, recognition and diagnosis. Many people reported a hesitation in admitting they had Alzheimer's disease for fear of negative public perceptions about the disease and its potential for causing social isolation...Even after the person with the disease has come to terms, denial and a general lack of understanding was still present among family and friends." 

-  Alzheimer's Association, Town Hall Meetings Report

Wearing Symbols to Share Our Stories

Photo by Jeff Norris

I have preached quite a bit in our Unitarian Universalist churches about how important I believe wearing symbols of our faith is in our lives. When we wear symbols we are showing other people what is important to us and telling them a little bit about who we are. We are also giving each other an invitation to share our stories and be in community with each other.

Many different groups and causes such as breast cancer, the Livestrong foundation, and autism, have rubber bracelets which people wear to raise awareness about their cause. The Alzheimer’s Association is no different and I have come to realize over the last year just how important those rubber bracelets and other symbols can be.

We have noticed people wearing shirts from the Alzheimer’s Association, or the purple Alzheimer’s Association bracelets throughout the year. This has been a wonderful way for us to make connections with other people dealing with some of the same things we are dealing with. This has allowed us to be supportive of each other and hear each other’s stories.

Wearing these symbols tells each other that it is alright to talk about this illness, no one needs to be alone. It tells us that there are other people who will support and care for us. It shows others a little bit about who we are, without us having to say anything. The symbol says, “Alzheimer’s disease affects my life.” 

Whenever I see these symbols, I am reminded of the benediction by my colleague Rev. Wayne Arnason:

“Take courage friends.
The way is often hard, the path is never clear,
and the stakes are very high.
Take courage.
For deep down, there is another truth:
you are not alone.”
- Unitarian Universalist Hymnal: Singing the Living Tradition, #698

By wearing these symbols, may we continue to raise awareness and create a community of support and care. I look forward to sharing our stories with each other.

Blessings,

Rev. Katie