BBC Radio Interview and “The Story Within: Personal Essays on Genetics and Identity”

The Gene Guillotine has opened many fabulous opportunities. These are the newest. Thank you for your amazing support!

Amy Boesky, Clare Dunsford, Michael Downing and I are part of an interview for BBC Radio 4 with Claudia Hammond about the book titled “The Story Within: Personal Essays on Genetics and Identity” published by The Johns Hopkins University Press.

Amy Boesky asked 17 authors who have a genetic disease in their family to write the chapters of “The Story Within.” I am honored to be included. Chapter 3: Collateral Damage is my contribution. “The Story Within” is a unique, powerful, and moving book. Despite different symptoms of the various diseases, we share many commonalities. I feel connected and understood in ways I have never previously experienced.

This BBC Radio 4, Health Check interview will broadcast Wednesday February 12th, 2014, on the World Service at 20:30 GMT, and at various other times over the next few days.

If you miss it, you can listen online from here:
http://www.bbc.co.uk/programmes/p002vsyw

New York Times article: “For Some Caregivers, the Trauma Lingers”

To read the article click on the link. http://newoldage.blogs.nytimes.com/2013/01/30/for-some-caregivers-the-trauma-lingers/#postComment

This is a great article written by Judith Graham about the stress of care-giving. Graham describes Dr. Stone’s fight to honor her mother’s preferences that “doctors were to pursue every intervention needed to keep her alive.” It reveals the health care mistakes that were made as well as the pain and guilt that Dr. Stone still feels even after her mother has died. This highlights the constant vigilance needed to honor end of life wishes and living wills.

My comment on the article is below.

My family is on the other side of this equation and many have clearly stated that they don’t want to live if they can’t feed themselves. With the threat of autosomal dominant Alzheimer’s disease, ADAD, also know as early-onset familial Alzheimer’s disease, EOFAD, we have seen our family members linger in bodies while their brains atrophy.

My mom was 48 years old when her symptoms began. Implementing her seemingly simple request, to not be be feed or have medical intervention, was agony. A care facility that agreed to honor Mom’s living will when she was admitted, reversed their stance when she neared the end, forcing us to find another home. Mom’s end of life wishes required constant vigilance to ensure nothing extra was administered. This included antibiotics to heal an infection rather than simply provide palliative care.

The stress of making caregiver decisions, watching family members die, and the added layer of genetic disease throws a wallop that comes out in my dreams. I know other loved ones and possibly myself will succumb to this same fate. After Mom died, I had dreams about losing her in a snow storm or in a flood. I was always searching to find her, take her hand, and lead her to safety. Now, my nightmares have changed to autopsies and life decisions. I often wake with my hands clenched, trying to grasp the elusive cure for Alzheimer’s in an attempt to save my family.

Summer/Work/Book/Running/News

I’ve been so busy this summer that I have spent very little time with family or friends despite my awareness of the importance of relationships and the fragility of life.

The 15th annual Memory Ride was held this summer. It is a bike ride my family, the Noonan’s, started to raise money for Alzheimer’s disease research.

I could not get time off work in the middle of the summer with our limited staff, so I decided I had to make some hard choices. I need more time off to finish the book and be able to participate in future activities like the Memory Ride. I gave notice at my place of employment where I have been waitressing for five years. It was a difficult decision.

Now, I am waitressing at a different restaurant with a much larger staff and have been working a lot to learn their style, the computer system, the menu, the drinks, and the specialty cocktails. Despite having little time off to work on my book, I feel grateful having hope for more time off.

I am also training for the Portland Marathon and ran16 miles on Tuesday. My knees are a bit sore from running up and down hills on paved roads, but the running keeps my head clear. On my next long run– 19 miles– I will stick to the trails.

There are still more text corrections and formatting changes that need to be made in the book. In the next few weeks, I hope to be able to carve more time out of my schedule for the book.

Recent news:

Her Circle e-zine featured a “Q&A with Kate Preskenis, Memoir and Memory” on July 28, 2011.

Minnesota Public Radio invited Dr. Creighton Phelps (the director of the Alzheimer’s Disease Research Centers Program at the National Institute on Aging) and me to be guests on Kerri Miller’s Midmorning call-in talk show about early-onset Alzheimer’s disease on August 31, 2011. * This link will bring you to the current show. In the middle of the page is “Program Archive” enter “August 31, 2011” and then click “GO” to listen.*

 

 

The BOOK!

The first proof arrived in a UPS truck. It feels like a book, is heavy like a book, looks like a booka real book–a cover, spine, back cover, ink on paper together making pages.

It’s an actual physical book with my title, The Gene Guillotine; An Early-Onset Alzheimer’s Memoir, on the front and my words on the inside.

I flip to a page and begin reading, the story, the chapters, the memories are all familiar, but on real paper, bound together in this new foreign form. It is the oddest sensation, like it is no longer mine. After many years it is finally a physical reality, existing outside of me, outside of my computer.

When I finally stop staring in awe, I will smell the pages, feel the cover, break the spine searching for errors in hopes of perfecting this creation.

Thank you for your amazing support.

CNN’s “Filling the Blank” available on Internet.

“Filling the Blank” is on the Internet and will air on CNN en Espanol this weekend and next week.  The Gene Guillotine book update coming soon.

There are four parts to the documentary:

FILLING THE BLANK – Part 1

http://edition.cnn.com/video/#/video/international/2011/02/24/wus.alzheimers.filing.blanks.bk.a.cnn

FILLING THE BLANK – Part 2

http://edition.cnn.com/video/#/video/international/2011/02/24/wus.alzheimers.filing.blanks.bk.b.cnn

FILLING THE BLANK – Part 3

http://edition.cnn.com/video/#/video/international/2011/02/24/wus.alzheimers.filing.blanks.bk.c.cnn

FILLING THE BLANK – Part 4

http://edition.cnn.com/video/#/video/international/2011/02/24/wus.alzheimers.filing.blanks.bk.d.cnn

World’s Untold Stories webpage is: http://edition.cnn.com/CNNI/Programs/untoldstories/

The preview may be seen here: http://edition.cnn.com/video/#/video/international/2011/01/20/wus.filling.blank.preview.cnn

CNN en Espanol:

CNN en Espanol will air the documentary again this weekend and next week. The times are below:

CNN en Español: Feb 26 at 2pm ET & 8pm ET; Feb 27 at 3am ET & 1pm ET.

CNN en Español: March 2 at 7am ET & 1pm ET.

I do not know if the Spanish version of “Filling the Blank” will be available online.

What is your reaction to this documentary?

Update on The Gene Guillotine and CNN’s “Filling the Blank” February 19th

(Feb. 25, 2011) Newest update- CNN’s documentary is available on Internet! See full update here.

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(Feb. 18, 2011) The Gene Guillotine: An Early-Onset Alzheimer’s Memoir has reached the second stage of formatting proofs and weighs in at just over 300 pages. Self-publishing is more involved and complicated than I imagined. I sent out a handful of review copies and am pleased with the great testimonials the book has received. I’ve held this book close due to the sensitive nature of genetic Alzheimer’s, now I am beginning to share it with more than my book team.

CNN International:
This is available to those who have CNN International. However, I have heard there is online streaming of CNN International. This means you may be able to watch “Filling the Blank” documentary on your computer *only* at the same time it airs on CNN International TV. The link I have found for this is: http://justin.tv/hoctoggle it is on the website http://www.justin.tv/ If you have trouble finding it, search on Justin for CNN + Live + International.

February 19th GMT 1400, 2100 (EST-9am, 4pm) and (PST- 6am, 1pm)
February 20th GMT 1000 (EST – 5am) and (PST- 2am)

CNN en Espanol “Filling the Blank”
This is available to those who have CNN en Espanol and is in Spanish.
Feb 26 at (EST-2pm, 8pm) and (PST 11am, 5pm, 12 midnight)
Feb 27 at (EST-3am, 1pm) and (PST 10am)
March 2 at (EST-7am, 1pm) and (PST 4am, 10am)

CNN Domestic, (USA)
CNN Domestic will not be airing “Filling the Blank”. I don’t have any more information.

Watch CNN’s “Filling the Blank” Trailer at: http://edition.cnn.com/video/#/video/international/2011/01/20/wus.filling.blank.preview.cnn

More information on World’s Untold Stories can be found at: http://edition.cnn.com/CNNI/Programs/untoldstories/

Stay informed, get updates.

CNN’s “Filling The Blank” airing on February 19th

(Feb. 25, 2011) Newest update- CNN’s documentary is available on Internet! See full update here.

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(Feb. 3, 2011) CNN’s Untold Stories will air “Filling The Blank” again on February 19, 2011. Here is the link to the trailer. This information is from their web page that also has new content, extra footage and articles about early-onset Alzheimer’s disease. My aunt, Julie Noonan Lawson and I were quoted in Alzheimer Cluster Sparks Dream of Cure by Felipe Barral. A friend here in the United States was able to watch “Filling The Blank” this past weekend through CNN’s International online streaming.

My manuscript, The Gene Guillotine, has received great feedback from reviewers. This week, I have been navigating technical issues. These technical issues feel like I’m banging my head against the wall. Now, I’m waiting for my editors to review additional formatting edits before it will go back to the book designer for round two of the book formatting.

I underestimated what is involved in self-publishing, I thought the book would be done by now. It’s a full time job. I keep moving forward, unaware of where the end actually lies. Is the light I see the end of the tunnel, or another oasis?

Update on CNN’s “Filling The Blank”

(Feb. 25, 2011) Newest update- CNN’s documentary is available on Internet! See full update here.

*******

Jan. 27, 2011

I have just learned that CNN domestic will NOT air “Filling The Blank” at this time.

I am frustrated and disappointed. However, I have been assured it will still be shown on CNN International and CNN Espanol on January 29, 2011. My Aunt Julie Noonan Lawson reminds me “that our message will still be delivered and after viewing the trailer, it looks like it will be a powerful piece. That is the ultimate goal.” We want to raise awareness about early-onset Alzheimer’s disease.

I hope CNN domestic will eventually air this documentary so my friends, backers and supporters here in the United States will also be able to see “Filling The Blank.”

The link to the trailer is: http://edition.cnn.com/video/#/video/international/2011/01/20/wus.filling.blank.preview.cnn?iref=allsearch

Airing times:

CNN International:
Sat 1/29 and 2/12: 8am ET, 4pm ET
Sun 1/30 and 2/13: 7am ET, 9pm ET

CNN en Espanol:
Sat 1/29: 2pm ET, 8pm ET
Sun 1/30: 3am ET, 1pm ET, 7pm ET
Wed 2/2: 7am ET, 1pm ET

http://katepreskenis.com/status-updates/cnns-%E2%80%9Cfilling-the-blank%E2%80%9D-alzheimers-documentary-is-available-on-the-internet/

Preview for “Filling The Blank” a CNN Documentary

The trailer to the documentary was released (http://edition.cnn.com/video/#/video/international/2011/01/20/wus.filling.blank.preview.cnn?iref=allsearch). It is beautiful, moving, and sad. I am honored to be one person among hundreds involved in this documentary.
I’ve been crying all day. It’s weird to see my teary face on TV, hear the pain in my relatives voices, listen to doctors, and watch other families equally desperate. We are all hoping, praying, exposing ourselves for one thing: A CURE!

Who’s who?
I’m the runner in the beginning, then at 2:37 and 3:22.
My aunt Julie is at 0:15 with my aunt Fran. Fran appears around 90 years old, she was only in her mid-fifties at the time. Julie is also at 3:12.
My uncle Eryc is at 0:26 with my uncle Butch. Like Fran, Butch appears to be in his 90’s, he was 58.
Butch 0.35, 0.49, 3.10
Fran 0.15, 0.20
Family 0.27, 2.45, 3.10, 3.17
Photo of Grandma and Grandpa 3:18
Photo of Mom and Dad 3:20

The Gene Guillotine Update:
Between the tissues, I am working with Terri, a graphic designer, for my publishing company logo; setting up business accounts for my publishing company; deciding on book categories; calculating book price based on wholesale price, discounts, costs, and miscellaneous fees; and purchasing ISBN numbers.
A couple hours ago, I received the first book proof in a digital file. I will look it over, ask for a few alterations, and then have three copies printed and bound like a real book! One for me, one for Amberly, my current editor, and one for Jerry, a new editor I hired today. After their feedback, there will probably be a few more changes. Followed by the first print run.
My tentative hope is to send books to Kickstater backers in the next two weeks. Then release the book to the public in three weeks. However, nothing seems to be as easy, smooth, or fast as my totally inexperienced publishing mind anticipates. I’m like a kid on December 1st asking how long until Christmas. If I ask ten times a day, will it arrive sooner?

R. Sargent Shriver died today, 1-18-2011

The New York Times has a beautiful tribute to Mr. Shriver.

I love the final quote of the article where Mr. Shriver tells his Yale students, “… look less at yourself and more at each other …”

I hate that we as a nation have lost another person to Alzheimer’s disease, but feel grateful Maria Shriver, Sargent Shriver’s daughter, is an advocate for defeating and teaching about Alzheimer’s. Here is a link from the HBO series, “Grandpa, Do You Know Who I Am?”

Maria, you and your father are admired and respected. I am sorry for your loss, that of your family, and the loss it represents to everyone who has lost or is losing someone to Alzheimer’s disease.