The Gene Guillotine: An Early-Onset Alzheimer’s Memoir   Buy Book   

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.

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?

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.*

 

 

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.

*******

(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.

The Kelleigh’s Strength and Determination

Running Marathons. Managing a Restaurant. Learning to Fly.

Desiree, Courtney and Hugh Kelleigh of Ballston Lake, New York grapple with the deterioration of their husband and father, Hugh Sr. who is battling aggressive early-onset Alzheimer’s disease and multiple sclerosis.

These young adults, Courtney and Hugh, were the first to notice symptoms in Hugh Sr. They are driven and determined to pursue dreams despite their father not being active in their life. Desiree is an committed mother, who manages a restaurant, supports her children and visits her husband in a care home. This timesunion.com article is a powerful and personal story of early-onset Alzheimer’s.

~Comments and insights are always welcome~