Wednesday, December 11, 2013

Parkinson's Resource List Update

Here is my latest resource list: 


 

PARKINSON’S / CARE PARTNER RESOURCES

 

1. Michael J. Fox Foundation (www.michaeljfox.org)

2. Parkinson Disease Foundation (http://www.pdf.org/)

3. National Parkinson Foundation (www.parkinson.org)



6. Muhammad Ali Parkinson Center Movement Disorder Clinic (http://www.thebarrow.org/Neurological_Services/Muhammad_Ali_Parkinson_Center/index.htm)

7. Davis Phinney Foundation (www.davisphinneyfoundation.org)

8. Parkinson Association of the Rockies (www.parkinsonrockies.org)

9. European Parkinson’s Disease Association (http://www.epda.eu.com/en/)


11. Parkinson’s UK (http://www.parkinsons.org.uk/)

12. Parkinson’s Australia (http://www.parkinsons.org.au/)

13. Parkinson’s New Zealand (http://www.parkinsons.org.nz/)

14. Northwest Parkinson’s Foundation (http://www.nwpf.org/)


16. Parkinson’s organizations and support groups in your area: (http://www.pdf.org/en/support_list)

17. Parkinson’s movement disorder specialist referral: (http://www.pdf.org/en/yy_doctor)

Thursday, December 5, 2013

"Living in the Moment" reprint


It seems appropriate to reprint a post I wrote during December 2011, which remains one of my most widely read articles, as a Christmas message:
The theme my church is using for the holiday season this year is "Christmas Present: Living In The Moment".  I have been thinking about this and how it applies to my life (which I am sure is what my church would have hoped for with all its' members).


The obvious double entendre here is that we all enjoy giving and receiving Christmas presents.  In this case, we all have the opportunity to both give and receive a wonderful gift  by making a conscious effort to "be present" for our families this Christmas and "live in the moment".  But first, we have to understand what this really means.


Living in the moment involves blocking out concerns, hopes, or fears related to events which have already occurred or that may happen in the future.  We can't change what has already happened, so why not (as Pumba so aptly suggests in The Lion King) "put our behind in the past".  We don't have to buy into the Hakuna Matata philosophy to do this.  It is unlikely that we will have "no worries for the rest of our days".  However, we have the option to not let real or imagined concerns about the future take the joy out of living today.


At the risk of sounding like I am "talking out of both sides of my mouth", for me this doesn't mean not taking steps to mitigate future problems.  In this respect, if we don't spend some time with our eyes on the horizon, we may miss opportunities to change the future in positive ways.  For me, the distinction is not letting these thoughts and activities OWN me.  I am not saying this is easy, but I am convinced that I owe it to my family and myself to make this a priority.  In fact, I will admit that right now I am not very good at it. 


In hindsight, I have not been good at this for a long time.  It is a skill that I (like many of us) think I lost somewhere between the innocence of childhood and the (in many cases) self-imposed challenges of adulthood.  Today, with the uncertainty of a future clouded by Parkinson's, the stakes have become higher.  I know if I spend too much time worrying about what could or might happen as the disease progresses, I run the risk of making my health worse today.


Which brings me back to the "Christmas Present" theme.  What better time could there be to commit to living in the moment?  With the magic of Christmas is in the air, why not focus on Christmas trees, decorating our homes inside and out, gatherings with friends, and memorable moments with family rather than concerns for the future?  I believe that I have the opportunity to make this holiday season, as well as the time that lies beyond, more pleasant and memorable for my family and me.  


This is starting to sound like "A Christmas Carol", and why not?  I find myself too often short-tempered and irritable with those who matter most to me.  I am told that this is a symptom of the disease for many, but I have to believe that I can change (or at least improve) if I put my mind to it and "keep Christmas in my heart".


For me, living in the moment is made much easier when I am focused on my faith.  I would not be writing this if I didn't have a tendency to revert to "self-reliance" and worrying about the future.  However, at the end of the day, I am secure and content in the belief that God will watch over my family and me and help us to deal with whatever life throws at us.   I hope that each of you will enjoy a wonderful holiday season that brings joy, hope, and renewal to you and your families.

Saturday, November 23, 2013

Carson And His Shaky Paws Grampa book review

                                                                                                                                                                                                                            Order Carson and His Shaky Paws Grampahttp://www.innovopublishing.com/innovo-store/digital-titles/product/190-carson-and-his-shaky-paws-grampa-by-kirk-hall-paperback-edition.html




Article published in On The Move, a quarterly magazine by the Parkinson's Movement (Issue 6, Autumn 2013-3rd World Parkinson Congress edition):

Carson and his Shaky Paws Grampa
Kirk Hall, illustrated by Alison Paolini


One thing for certain is there are not enough books about Parkinson's disease for children or young adults. In thinking about that, it became clear why there are not more books.

Parkinson's is very difficult to understand , even if you are the person who has been diagnosed with it . You only see the motor deficiencies manifested sporadically : poor balance, shuffling feet, or shaking hands. Imagine what children must think and how difficult it would be to explain. But that is exactly what Kirk Hall has done in Shaky Paws Grampa, leaving the medical explanation to another time and place.

This oversized book is brilliant for reading aloud to one or several youngsters. The colorful illustrations, as well as the stories and experiences Carson recalls of woodsy areas complete with wildlife, help frame the opening setting of a log cabin in the state of Colorado.

The book is written in first person by seven-year-old Carson, who has a rather large family (his two parents, three siblings, and a dog). However, the story confines the storyline's characters to just Carson and his Grampa Hall . We see into Carson 's mind's eye as he remembers Grampa telling about when he was just a baby, and other times Carson recalls several experiences on his own.

Carson does not become aware of Grampa's motor symptoms until he and Granma move closer to his family, indicating the Parkinson's was advancing. Carson's worry is eased when Grampa uses humor to reassure him.
We also read hints of Grampa's symptoms advancing when he stops driving and his shaking worsens. But Grampa freely discusses his therapy of taking his medication on time. The story has a happy ending, however, when Grampa gets a special procedure done at the hospital that apparently rids him of his "shaky paws."

Hall has done an excellent job of convincing the reader that anyone, even an outdoorsman like Grampa Hall, can get Parkinson's. Hall also shows how the disease can be managed successfully, without getting into the medical details. This is a delightful, "must have" for children and grandchildren of those diagnosed with Parkinson's.

Reviewed by Peggy Willocks
Member, Editorial Board
Jon Stamford, Editor


Peggy is a former educator from Tennessee. In 1994 she was diagnosed with Young Onset PD aged 44. In 1997 she was named Tennessee Elementary Principal of the Year; one year later she had to retire early on disability.

Today she is an active advocate for the Parkinson’s community, affiliated with the Parkinson’s Action Network (PAN) for over a decade, in 2005, receiving PAN’s Milly Kondracke Outstanding Advocacy Award.

Peggy is also a charter member of the Parkinson Pipeline Project, a grassroots group to accelerate the development and approval of more effective treatments through patient education and trial participation. The group was awarded the Murray Charters Award for advocacy in 2010. She has been a leader in her local support group for a number of years. Peggy also serves as a member of PDF’s People with Parkinson’s Advisory Council (PPAC).

Along with a cohort of 10 people with Parkinson’s, Peggy and this group (the Parkinson’s Creative Collective) have completed a unique book, The Neurowriter’s Guide to the Peripatetic Pursuit of Parkinson’s, available now and reviewed in this issue of OTM.


Tuesday, November 12, 2013

National Family Caregivers Month Interview

NFC Month jpg 2013
                                                        CAN no tm








Linda, Cheryl Siefert (Executive Director, Parkinson Association of the Rockies), were invited to do a 25-minute interview yesterday with Wilk Broadcasting at their studio yesterday.  The focus was to talk about National Family Caregivers Month, Parkinson's disease, what services PAR offers for care partners, my experience with PD, deep brain stimulation, advocacy, and writing, and Linda's experience as a care partner and advice to others in that position.  We talked about how my current book about care partners (Carina And Her Care Partner Gramma) was developed and how it is designed to be a communication tool for adults to use with children or grandchildren.

The interview will air this Sunday, November 17th.  The schedule is 6 am on Mix 100, 7am and 11pm on Kool 105 and 11:30 pm on 92.5 the Wolf.  You can listen to the interview at this link:  
http://www.kool105.com/pages/14343757.php.

Monday, October 28, 2013

A Tribute to Care Partners


NFC Month jpg 2013

                          CAN no tm
 
 
 
 
 
 
                                                                                
 
This post includes information from the Caregiver Action Network* site, to which all those who benefit from the support of caregivers are indebted.  This important information is included on their website:
We in the Parkinson's world refer to caregivers as care partners in order to emphasize the joint involvement of patient and care partner.  We recognize that care partners come in a variety of "shapes and sizes", including women, men, family members, or friends  We also need to pay tribute to the important roles played by paid homecare, assisted living, or nursing home staff, many of whom are driven primarily by their desire to care for others.
 
I have written recommendations for PWPs and care partners in previous blog posts that include thoughts priorities for each group as well as how they can support each other.   Mutual support, communication, patience, teamwork, and love are hallmarks of a desirable PWP/care partner relationship.  I would emphasize the desirable part of that statement while recognizing that we are all human and that there are forces at work that can make this difficult on any given day.  The important thing, I think, is that when we "stray off course" to recognize the importance to both parties of returning to that mindset as soon as possible.  If we have times when that is difficult, it is important to be willing to reach out to resources like support groups, "umbrella" organizations (like Parkinson Association of the Rockies in our area), clergy, family, or friends.  We are not in this alone!

In my case, I am extraordinarily fortunate to have the best caregiver I could ever hope for, my wife of 44 years, Linda.  As a former social worker, it is her nature to care for others and put their needs ahead of her own.  While we have our ups and downs (see the previous paragraph) like anyone else, we are blessed by mutual love, devotion, support of family and friends, and shared faith that serves as our "true north".  Importantly, we are also both involved in and committed to supporting our local support group in Highlands Ranch, Bionic Brigade (the Denver area DBS support group), Parkinson Association of the Rockies (PAR), a new care partner support group, and the Parkinson Disease Foundation (PDF) patient research advocacy program, as well as remaining involved in community support programs through our church.

One of the ways Linda displays her patience is by allowing me to spend hours at my computer working on my writing, which currently includes this blog and finishing a new book titled Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia**.  She did the same as I wrote my PD-related children's books***in 2011 and earlier this year (the new one focuses on the role of care partners as well as other PD issues).  We travelled together to the recent World Parkinson Congress in Montreal.
 


She demonstrates her commitment to my well-being by encouraging me to join her for walks, bike rides, or to work out at our local recreation center.  She is my golf partner, camping buddy, and travel companion (we have a trip to Shanghai planned to visit our son and family next March).  Since I only drive very short distances infrequently, she is also my chauffeur. 

I would invite all my PWP friends to go out of their way in November (and in the months that follow) to find ways both subtle and overt to express our love and appreciation to those who are devoting their lives to us, often at the expense of their own interests.  Finally, we need to recognize that PWPs have a caregiver role to play by ensuring that our partner's wellness is not overlooked.  After all, where would we be without them? 
 
 
* The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the more than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
**Not yet released
***Kirk's children's books are books one and two in his "Shaky Paws Grampa" series titled Carson And His Shaky Paws Grampa (http://www.innovopublishing.com/innovo-store/digital-titles/product/190-carson-and-his-shaky-paws-grampa-by-kirk-hall-paperback-edition.html) and Carina And Her Care Partner Gramma (http://www.innovopublishing.com/innovo-store/digital-titles/product/343-carina-and-her-care-partner-gramma-by-kirk-hall-hardback.html).



Sunday, October 20, 2013

World Parkinson Congress Highlights

 
 
Linda and I went to the World Parkinson Congress in Montreal recently.  It was our first time attending this amazing event attended by PWPs, care partners, PD organizations, doctors and researchers from all over the world.  The last one was held in 2010 in Glasgow, Scotland.

We arrived on Saturday before the Congress started in order to participate in the Parkinson Disease Foundation (PDF) Parkinson Study Group (PSG) meetings.  There are seven different research groups that address a variety of different PD categories.  This year for the first time, we were invited to participate along with other PAIR (Parkinson Advocates In Research) members to provide "patient input".  We sat in on the Neurosurgical group and Cognitive/Psychiatric group meetings and appreciated the opportunity to interact with doctors and researchers from all over the U.S.

This new development is part of movement toward more patient engagement in the PD world.  It is encouraging for PWPs like me that there is a recognition of the value of including patients in the research process as well as placing an emphasis on patient-centered approaches to medical services.

We attended pre-congress presentations on Tuesday and the opening ceremony on Tuesday night where we heard a variety of very inspirational speeches from organizers and PWPs.  On Wednesday, Thursday, and Friday we attended large group sessions in the morning and then selected two workshops each afternoon on topics of interest.  Between sessions, we spent time on the "floor" of the convention where the PD organizations had booths and hundreds of posters were on display that covered a wide range of subject matter.  There was also a "research village" where I participated on a panel Friday morning.

One of the big topics being discussed was the role of alpha-synuclein in progression of PD and cognitive diseases.  These are proteins that develop into clumps forming lewy bodies.  Part of the discussion involves evidence that these problems may start in the gut and then migrate through the spinal canal to the brain.  Research is also being devoted to slow down or stop the migration of alpha-synuclein from one cell to another causing formation of lewy bodies.

In addition to what we were able to learn, a huge benefit we experienced by attending the WPC was the energy and strong sense of community we experienced there.  It was great to spend time with people we already know and see infrequently, and especially invigorating to meet so many new people that will become part of our network.  At the end of the day, we are one big family all reaching out to support and care for each other in different ways. 


If you were unable to go, you can still visit the WPC website and hear many webinars at http://www.worldpdcongress.org/ that include the opening ceremony, keynote speeches, and cutting edge presentations on a variety of important subjects form world-class presenters.

The next World Parkinson Congress will be held in 2016 in Portland, Oregon.  It is definitely a worthwhile trip!

Saturday, September 14, 2013

CARINA AND HER CARE PARTNER GRAMMA: Note to Readers




The first book in the Shaky Paws Series, Carson and His Shaky Paws Grampa, was designed to be a “conversation starter” for adults to use with children for discussion regarding serious illness. There were general references to Parkinson’s (PD) symptoms and the deep-brain stimulation therapy that I had to “fix” my tremor. The nonspecific dialog was intentional so that the book might be helpful relative to a variety of different illnesses. Additional Shaky Paws books are planned.

Carina and Her Care Partner Gramma was written to address PD specifically and to provide a communication tool for People With Parkinson’s (PWP) to use with their children or grandchildren. This book provides much more detail specific to PD symptoms and mentions important issues in the “PD world,” including deep-brain stimulation therapy, the importance of exercise, and the need for patient participation in clinical research studies.

This book also emphasizes the importance of care partners. Care partners are most often women (since the majority of PWPs are men), but there are also men, family members, or friends in this difficult and demanding role. We tend to focus on the challenges faced by PWPs, which is understandable. However, PWPs owe a huge debt of gratitude to these dedicated individuals who do so much with, in many cases, far too little recognition or expression of appreciation. Further, it is important that resources be devoted not only to education of care partners but also to counseling and other support strategies to protect their wellness.

Carina, whose middle name is Marie (the same as Linda’s mother, Ruth), and my wife have had a special relationship from the start. Shortly after she was born, we both noticed how much she seemed to resemble Ruth. We also realized that Carina’s parents were with us when we visited Ruth in the hospital shortly before she died nine months before Carina was born. As she grew older, it was clear that Carina and Ruth share some common characteristics. It is comforting to think that Ruth’s spirit lives on, somehow, through Carina.

The events and communication described in this book are depicted, for the most part, the way they actually occurred. I am sure Carina has not retained all the detail described (she is only six years old), which raises the point I made in the first book. As parents and grandparents, you know your children and grandchildren best, and are best equipped to decide what to tell them in these situations. Linda and my strategies for communicating with our grandchildren continues to be adjusted based on our perception of each child’s level of maturity and readiness to have this kind of information shared with them.

I have, once again, included a page that addresses our faith, which continues to be a great source of support, hope, and comfort for us.

Thursday, September 12, 2013

Carina and Her Care Partner Gramma Press Release



FOR IMMEDIATE RELEASE

Innovo Publishing LLC Releases Carina and Her Care Partner Gramma by Kirk Hall.


Summary / Description: Innovo Publishing LLC released Carina and Her Care Partner Gramma, an engaging children’s book meant to open up communication about Parkinson’s. This book is available now in the U.S. and internationally in paperback, hardback, Amazon Kindle, Barnes and Noble Nook, Apple iPad/iPhone, Google Android, and other smartphone/PC editions.

Memphis, TN – September 18, 2013 – Innovo Publishing LLC released a new Christian title, Carina and Her Care Partner Gramma, written by Kirk Hall and illustrated by Alison Paolini. Seeing a loved one with Parkinson’s disease can be scary and confusing for children. Carina and Her Care Partner Gramma, the second book in the Shaky Paws Grampa series, was written to address Parkinson’s disease (PD) specifically and to provide a communication tool for people with Parkinson’s to use with their children or grandchildren.

Carina and Her Care Partner Gramma provides details specific to PD symptoms and mentions important issues in the “PD world,” including deep brain stimulation therapy, PD advocacy, the importance of exercise, the need for patient participation in clinical research studies, and the importance of care partners.

Carina and Her Care Partner Gramma was conceived and written by Kirk Hall and illustrated by Alison Paolini, PD patients who also are parents and grandparents.

A portion of the proceeds from the sale of this book will be donated to support Parkinson’s research and awareness.

“A profound, yet delightfully innocent exploration of the complex facets of living with the day-to-day challenges of caring for people with Parkinson’s.”
Peter Davison, international PD speaker and father of two preschool children

“This book may be written for children, but Kirk’s loving style is incredibly appropriate for people of all ages. He sends a beautiful and very powerful message—a must read for everyone.”
Carol Walton, CEO, Parkinson Alliance

“Much like Kirk’s earlier work, this book provides an opportunity to talk with children and other members of the family about the disease in a direct but nonthreatening way. I recommend it!”
John Dean, international PD speaker

“I loved the ‘voice’ of your grandchildren and the personal illustrations. I am glad you included the surgery, as it gave my kids an opening to ask questions.”
Kate Strittmatter, early onset PWP mother of two young children

“It really brings home the wonderful relationships of grandchildren to grandparents and how they too are affected by PD. Definitely a wonderfully positive and honest perspective.”
Cheryl A. Siefert, Parkinson Association of the Rockies

“Kirk’s heart-warming story reinforces the special relationship children and grandparents have, whilst skillfully weaving in the importance of carers and family. This lovely book subtly opens the door to exploring with young children the impact of Parkinson’s on daily life as well as the importance of participating in clinical trials. A super read for all ages.”
--European Parkinson Disease Association, London, UK

Carina and Her Care Partner Gramma is available now in the U.S. and internationally in paperback (ISBN: 978-1-61314-171-7), hardback (ISBN: 978-1-61314-158-8), Amazon Kindle, Barnes and Noble Nook, Apple iPad/iPhone, Google Android, and other smartphone/PC editions.

About the Author: Kirk Hall is a husband, father, and grandfather of six living in the Denver area. He has been an author and patient perspective Parkinson’s advocate since 2011. His personal experience as a person with Parkinson’s includes participation in three area support groups, clinical research studies including two visits to the National Institutes of Health’s (NIH) National Institute of Neurological Disorders and Stroke (NINDS), and joint presentations with movement disorder specialists to support groups sponsored by the Parkinson Association of the Rockies (PAR) and University of Colorado Hospital. Kirk has been a guest speaker at the Muhammad Ali Parkinson Center in Phoenix and has been the subject of television, radio, and newspaper interviews. He and his wife of 43 years, Linda, are Parkinson Disease Foundation (PDF) clinical research advocates. Kirk’s Shaky Paws Grampa blog, which includes articles about his writing, advocacy activities, PD-related subjects, and personal journey can be found at http://shakypawsgrampa.blogspot.com/.

About the Illustrator: Alison Paolini lives in Northern California where she enjoys a multitude of creative activities. She studied acting, set design, fine art, and commercial illustration at California State University at Northridge where she received her BA in Art. Alison is a published illustrator and poet. She is an active member of the Parkinson’s Association of Northern California. She and her husband have two children and three grandchildren. They have enjoyed living in and visiting many parts of the world.

About Innovo Publishing LLC: Innovo Publishing is a full-service Christian publisher serving the Christian and wholesome markets. Innovo creates, distributes, and markets quality hardback and paperback books, eBooks (Kindle, Nook, iPhone, iPad, ePub, Android), audiobooks (CD & MP3), music, and film through traditional publishing, cooperative publishing, and independent publishing models. Innovo provides distribution, marketing, and automated order fulfillment through a network of thousands of physical and online wholesalers, retailers, bookstores, music stores, schools, and libraries worldwide including Amazon, Audible, iTunes, Rhapsody, Barnes & Noble, Borders and many more. Innovo publishes Christian fiction and non-fiction books and wholesome books for all publishing genres. Visit Innovo at www.innovopublishing.com.


Contact Information:
Contact:           Dr. Bart Dahmer
Innovo Publishing LLC
Phone:              1-888-546-2111
Web Site:         www.innovopublishing.com
Email:               info@innovopublishing.com

Wednesday, September 11, 2013

PARKINSON EXERCISE ESSENTIALS: A New Program from the Davis Phinney Foundation



DVD ParkinsonExerciseEssentials sm Parkinsons Exercise Essentials DVD

The Davis Phinney Foundation is pleased to announce their newest initiative, an instructional DVD on exercising with Parkinson’s disease. Parkinson’s Exercise Essentials: Getting Started, Staying Motivated and Seeing Results was developed in collaboration with Dr. Matthew Ford of The University of Alabama at Birmingham and provides the background information and tools needed to embark on a lifelong personal exercise program.


The DVD includes workouts that can be performed at home, in a fitness center or in the 
community. The workouts include guidance and adaptations for a range of ages and stages of Parkinson’s, from diagnosis through advanced stages of the disease. Thirteen people with Parkinson’s (ages 35 to 74) demonstrate that neither age nor disease progression need be barriers to fitness.  Their offical launch for this program will take place September 17.


Please visit www.davisphinneyfoundation.org/dvd to view a short preview of the DVD and learn more.  You can also view a movie trailer at http://vimeo.com/73142626.  The DVD is free and can be requested online or by calling 855-346-7564.

Tuesday, September 10, 2013

CARINA BOOK




     














I introduced this book a few months ago on this blog at 
http://shakypawsgrampa.blogspot.com/2013/04/carina-and-her-care-partner-grammma.html.  The book is now available on Amazon (http://www.amazon.com/s/ref=nb_sb_noss?url=node%3D4&field-keywords=carina+and+her+care+partner+gramma) and will be available soon at all online bookstores and on the Innovo Publishing website.  I think the soft cover (paperback) version is the best value as it is identical to the hardback except for the cover, which is laminated and should hold up well.

About the Book: Carina and Her Care Partner Gramma, the second book in the Shaky Paws Grampa series, was written to address Parkinson's disease (PD) specifically and to provide a communication tool for people with Parkinson's to use with their children or grandchildren. This book provides details specific to PD symptoms and mentions important issues in the "PD world," including deep brain stimulation therapy, PD advocacy, the importance of exercise, the need for patient participation in clinical research studies, and the importance of care partners. Carina and Her Care Partner Gramma was conceived and written by Kirk Hall and illustrated by Alison Paolini, PD patients who also are parents and grandparents. A portion of the proceeds from the sale of this book will be donated to support Parkinson's research and awareness. **** About the Author: Kirk Hall is a husband, father, and grandfather of six living in the Denver area. He has been an author and patient perspective Parkinson's advocate since 2011. His personal experience as a person with Parkinson's includes participation in three area support groups, clinical research studies including two visits to the National Institutes of Health's (NIH) National Institute of Neurological Disorders and Stroke (NINDS), and joint presentations with movement disorder specialists to support groups sponsored by the Parkinson Association of the Rockies (PAR) and University of Colorado Hospital. Kirk has been a guest speaker at the Muhammad Ali Parkinson Center in Phoenix and has been the subject of television, radio, and newspaper interviews. He and his wife of 43 years, Linda, are Parkinson Disease Foundation (PDF) clinical research advocates. Kirk's Shaky Paws Grampa blog, which includes articles about his writing, advocacy activities, PD-related subjects, and personal journey can be found at http://shakypawsgrampa.blogspot.com/. **** About the Illustrator: Alison Paolini lives in Northern California where she enjoys a multitude of creative activities. She studied acting, set design, fine art, and commercial illustration at California State University at Northridge where she received her BA in Art. Alison is a published illustrator and poet. She is an active member of the Parkinson's Association of Northern California. She and her husband have two children and three grandchildren. They have enjoyed living in and visiting many parts of the world.


Endorsements


“Kirk’s heart-warming story reinforces the special relationship children and grandparents have, whilst skillfully weaving in the importance of carers and family. This lovely book subtly opens the door to exploring with young children the impact of Parkinson’s on daily life as well as the importance of participating in clinical trials. A super read for all ages.”
European Parkinson Disease Association
London, UK

“I absolutely love this kid’s book!  It really brings home the wonderful relationships of grandchildren to grandparents and how they, too, are affected by PD.  Definitely a wonderfully positive and honest perspective.”
Cheryl A. Siefert, MNM
Executive Director, Parkinson Association of the Rockies

“I loved your book. It made me cry.  I loved that the “voice” was that of your grandchildren and the personal illustrations. I am glad that you included the surgery as it gave my kids an opening to ask questions.”
Kate Strittmatter
Early Onset Support Group Leader & early onset PWP mother of two young children

“This book may be written for children, but Kirk’s loving style is incredibly appropriate for people of all ages. He sends a beautiful and very powerful message---a must-read for everyone.”
Carol Walton
CEO, Parkinson Alliance

“A ‘child's-eye view’ of Parkinson's disease as it intersects with daily life. Much like Kirk's earlier work, this book provides an opportunity to talk with children and other members of the family about the disease in a direct but non-threatening way. I highly recommend it.”
John Dean
International Parkinson’s Speaker & Parkinson's Program Coordinator, Mountain States Division at Life Care Centers of America

"A profound, yet delightfully innocent exploration of the complex facets of living
with the day to day challenges of caring for people with Parkinson's. A must read for young and old together who cherish a simple and gentle way to stimulate curiosity and dialogue about Parkinson's Disease."
Peter Davison
International Motivational Speaker & early onset PWP father of two preschool children

Carina And Her Care Partner Gramma is available at www.InnovoPublishing.com and at all online bookstores including Amazon (http://www.amazon.com/s/ref=nb_sb_noss?url=node%3D4&field-keywords=carina+and+her+care+partner+gramma)