Shake, Rattle and Roll

Why I Blog

I blog to remind others and myself that we are not alone. It is easy to feel isolated in our journey down the Parkinson’s path.

I blog for a place to go to express my fears and frustrations and to share my joys and humor with others living with Parkinson’s and Deep Brain Stimulation.

I blog to educate and inspire others and to spread awareness.

I am delighted that others have actually tagged along with me on my journey, and am honored to be recognized for my work. Caring.com stated about Shake, Rattle and Roll: “We believe that your site and story serves as a fantastic glimpse into the human experience of Parkinson's Disease and DBS, and that it provides real relief, support and hope to others going through similar experiences. We truly commend you for sharing your story.”

In addition, Caring.com recently provided the recognition when they captured my story at: http://www.caring.com/articles/shake-rattle-roll-blog

Shake, Rattle and Roll

By Carol O'Dell, Caring.com contributing editor

Last updated: February 26, 2013

"Shake, Rattle and Roll, a blog by Kate Kelsall, shares the journey of Parkinson's and DBS (deep brain stimulation), written from the perspective of the person who's being cared for. It's filled with fact and fun as she lets us in on what it's like to be on the other side of care. Kate experienced early-onset Parkinson's (at the age of 46 -- 17 years ago) and offers her blog to the caregiving community. Few of those receiving care write about their experience, and Kate opens up about her life, her marriage, and her treatment with incredible resiliency and a wicked sense of humor.

In one blog titled "Why Me," she asks the questions we all ask:

"Why not me?"

"Why her or him?"

"Why not her or him?"

"Why this?"

"Why now?"

She bemoans the loss of her "real" (e.g., paid) job and professional career. She whines about losing her voice, the extreme movements (or the lack of movement) caused by Parkinson's. Yet what is so amazing is that she never seems to lose sight (not for long, anyway) of her blessings, and just when the subject gets "heavy," she lightens it with something snarky -- a joke, a quip -- that reminds us all to pick up whatever life throws at us and throw it right back.”

Other Awards and Recognition Received for Shake, Rattle and Roll: http://katekelsall.typepad.com/my_weblog/2012/11/shake-rattle-and-roll-blog-awards-.html

Check out the Caring.com’s 18 Great Caregiver Stories on the Web at http://www.caring.com/articles/best-caregiver-stories-web

Caring.com has nearly two million unique visitors each month, and is the leading resource for senior care reviews on the web. With 10,000 people turning 65 every day, they are also one of the best resources in the US for family caregivers who are caring for an aging loved one.

Shake, Rattle and Roll-–Blog Awards

I am honored and humbled to have received the following awards for my blog, Shake, Rattle and Roll.

 

15 Best Parkinson's Blogs of 2012

You can find the complete list (in no particular order) at: http://www.healthline.com/health-slideshow/best-parkinsons-blogs

“Blogger Kate Kelsall tells all on her candid Parkinson’s blog cleverly entitled Shake, Rattle and Roll. Having lived with this disease for 16 years, Kate knows a thing or two about managing symptoms, searching for treatments, and even playing the accordion. Don’t let her disarming exterior fool you, however -- she is one tough cookie, and Parkinson’s disease has met in her a formidable foe. Learn from her tireless enthusiasm for life, rejoice in her successes, and share in her challenges. You will be glad she’s on your side when PD symptoms come a-calling!"

100 Top Senior Living Sites for Nurses

http://nursingassistantguides.com/senior-living/#aging-ailments

"A 60-year-old woman who was diagnosed with Parkinson’s disease 14 years ago provides her insights and inspirations in this blog. She shares a lot — including her love of accordion jazz.”

Removing the Mystery: Top 49 Blogs About Parkinson’s Disease http://www.healthcaretechnicians.org/removing-the-mystery-top-49-blogs-about-parkinsons-disease/

"Katie Kelsall is a 60 year old “shaky accordionist.” She was diagnosed 14 years ago and has been blogging about it for a while. Thoughts, tips, and more are all shared."

40 Blogs to Follow for Parkinson’s Awareness Month http://www.nursingschools.net/blog/2011/04/40-blogs-to-follow-for-parkinsons-awareness-month/

“Kate Kelsall does not allow Parkinson's to interfere with the life she loves, and she dedicates her blog to spreading awareness of the realities behind having it.”

15 Best Parkinson's Blogs of 2012

Healthline recently published the list of their 15 favorite Parkinson’s blogs. I was delighted that Shake, Rattle and Roll made the list.

You can find the complete list (in no particular order) at:

http://www.healthline.com/health-slideshow/best-parkinsons-blogs

From Healthline:

“Blogger Kate Kelsall tells all on her candid Parkinson’s blog cleverly entitled Shake, Rattle and Roll.  Having lived with this disease for 16 years, Kate knows a thing or two about managing symptoms, searching for treatments, and even playing the accordion.

Don’t let her disarming exterior fool you, however -- she is one tough cookie, and Parkinson’s disease has met in her a formidable foe. Learn from her tireless enthusiasm for life, rejoice in her successes, and share in her challenges. You will be glad she’s on your side when PD symptoms come a-calling!"

The Dopamine Chronicles

The Dopamine Chronicles is the new Parkinson's Disease blog of cartoonist, Martin Bee. His blog specializes in Parkinson's Disease cartoons. In the words of Martin Bee "Any of you diagnosed with this disease probably can relate to the reaction. The Dopamine Chronicles is all about me continuing my art, my toons and so on. So I decided to do (almost) a cartoon a day about Parkinson’s and me."

Martin Bee is a 60 year old Vietnam Veteran who was a Navy Corpsman stationed with the 1st Marine Division while he was in Vietnam. After leaving the Navy, he graduated in Art and then worked in design and illustration. Despite being diagnosed with Parkinson's Disease, which included a shaky right hand, he could still draw. Although Parkinson's Disease hindered his drawing technique, he modified his technique so that he could continue what he loves--the art of cartooning.

Check out The Dopamine Chronicles blog site at: http://thedopaminechronicles.wordpress.com

 

Shaky Paws Grampa

 
CARSON AND HIS SHAKY PAWS GRAMPA, the first book in Kirk Hall's Shaky Paws Grampa series, is a story about the relationship and love between a grandfather who has Parkinson's Disease and his seven-year-old grandson. The story is designed to help parents and grandparents comfortably talk about the initial symptoms of Parkinson's Disease and address common questions and concerns children may express.

For more information on Carson And His Shaky Paws Grampa, visit Kirk Hall's blog and facebook page at:

http://shakypawsgrampa.blogspot.com/

http://www.facebook.com/shakypawsgrampa

To order this inspiring book: http://www.innovopublishing.com/Featured-Book-Shaky-Paws-Grampa.html

 

40 Blogs to Follow for Parkinson’s Awareness Month

 
Just when I’m feeling too exhausted to talk about, think about, answer a phone call, respond to an email about Parkinson’s Disease, I receive the following message:

We at “Nursingschools.net”, wanted to let you know that we featured your blog in one of our recent articles on our own blog. 40 Blogs to Follow for Parkinson’s Awareness Month is linked below and could be a fun way to share this announcement with your readers.

http://www.nursingschools.net/blog/2011/04/40-blogs-to-follow-for-parkinsons-awareness-month/

Shake, Rattle and Roll: Kate Kelsall does not allow Parkinson's to interfere with the life she loves, and she dedicates her blog to spreading awareness of the realities behind having it.

Thank you, Nursingschools.net. I appreciate it!

Figuring Out Parkinson's

If you are searching for information about Parkinson's Disease and want it all in one place, take a look at this comprehensive list:

“Removing the Mystery: Top 49 Blogs About Parkinson’s Disease” at  http://www.healthcaretechnicians.org/removing-the-mystery-top-49-blogs-about-parkinsons-disease/

Groundbreaking New Blog About Parkinson’s Targets the Recently Diagnosed

I wish Diane Cook's and Betsy Vierck's blog was available when I was recently diagnosed with Parkinson's disease (PD). During that stage of my PD journey, I was in the throes of denial.

What does it mean to be recently diagnosed with PD?

Your PD diagnosis was less than 4 years ago.

Your needs for information and support are very different than person's with PD who are in the middle to late stages of the disease.

You are still grappling with the fact that you have a chronic, progressive brain disease.

Groundbreaking New Blog About Parkinson’s Targets the Recently Diagnosed

DENVER, CO, October, 2010 -- www.recentlydiagnosedwithpd.org , a blog for people recently diagnosed with Parkinson’s disease (PD), was launched on September 11, 2010 by two PD patients, Betsy Vierck and Diane Cook. Both women were diagnosed with the progressive and often-debilitating disease within the last two years.  The blog is sponsored by Project Spark, a Washington, DC and Denver-based foundation focused on Parkinson’s disease.

Soon after receiving the news that they have PD, Vierck and Cook, both avid researchers, started to dig into the literature to learn about their disease. The maze of information on the Internet was often confusing and conflicting.  They were not sure whom to turn to for emotional support.

 “Doctors only have a limited time to tell you what you have and write your prescription.  Even the most competent and compassionate physician can’t tell you everything you need to know or give you substantive emotional support as you try to grasp the fact that you have this incapacitating disease,” says Vierck.

recentlydiagnosedwithpd.org  is the second program Vierck and Cook have developed to help fill this gap in information and support and to meet the needs of people in the early stage of Parkinson’s. Their first project is a monthly Denver-based support group established in February 2010 for people recently diagnosed with PD. The group, sponsored by the Colorado Neurological Institute and the Parkinson Association of the Rockies, has grown to 50 members in six months.

 “From learning to cope with the emotional issues associated with a PD diagnosis to the measures we can take to potentially slow down the progression of the disease in the brain, we realized that the information we were gathering for and from the support group is extremely valuable.  We needed a way to get this wealth of information to the 65,000 people diagnosed with Parkinson’s every year.  So, we decided to create recentlydiagnosedwithpd.org as a national forum specifically for this group,” says Cook.

Vierck and Cook’s philosophy is to be upbeat and focus on solutions. The blog’s tag line describes this spirit: A Blog About Taking Charge of Your Parkinson’s with Optimism, Energy, And Action.

Recentlydiagnosedwithpd.org  covers those topics that are uniquely important to people who are in the early stage of Parkinson’s. They also keep track of breaking news in Parkinson’s research and provide interviews with experts in PD and other important areas such as nutrition and exercise.

Do They Love Me or My Blog?

“THEY love you in Boulder,” a stranger says as she approaches me at one of the Parkinson’s meetings.

My husband, Tom has a handful of relatives living near Boulder who HAVE to love me. However, knowing only one non-family member in Boulder, how could THEY possibly love me?

She elaborates that they, the folks in the Parkinson’s support groups and the Davis Phinney Foundation, love the humorous, light tone of my blog, Shake, Rattle and Roll, and love that I don’t take Parkinson’s too seriously. But do they love me or my blog, I silently question. It reminds me of those late night debates with friends in college: “Does he love me for me or for my body?”

My written voice is much stronger than my spoken voice. Thanks go to my writing coach, Shari Caudron, author of Who Are You People and What Really Happened: Unexpected Insights from Life’s Uncomfortable Moments. Shari helped me eliminate qualifiers (perhaps, maybe, kinda, sorta, sometimes) from my written voice and develop a strong writing style. When I was coached by Shari nearly four years ago, she almost had to put a gun to my head to force me into creating my blog. Despite my whining and excuses, I am grateful that she coerced me into writing it. Now when people ask if I am Shake, Rattle and Roll, I enthusiastically respond, “Yes I am.” It has become part of my identity.

People who read my blog first and later meet me in person seem disappointed. The strong person that I am on the written page is not the weak person in front of them with the quiet whispery spoken voice of Parkinson’s. They feel deceived.

Recently I found a voice coach, Mary Spremulli, author of Voice Aerobics DVD, to work with me on developing a stronger speaking voice, one that is aligned with my writing voice, and reflects my true personality and spirit. The question “Do they love me or my blog?” then becomes irrelevant. It’s all one and the same.

Now if only I could write like Shari and speak like Mary, I’d be perfect.

The Misunderstood Mask of Parkinson's

I overheard my friend say “she still has that Parkinson’s stare” when describing me on the phone to her sister. My feelings were hurt, particularly when I’ve made progress in managing the motor symptoms of Parkinson’s.

No matter how hard I try to smile and look pleasant, my expressionless Parkinson’s mask persists. Sure I can smile when someone is taking my picture, but it’s too much multi-tasking to remember to smile all day.

My dead-pan Parkinson’s face and stare are frequently misinterpreted. I have been accused of being angry when happy, sad when gleeful and bored when passionate. People think I’m in chronic bad mood with “that frown on your face.”

Normal people just don’t get it. But Peter Dunlap-Shohl does get it. A cartoonist with Parkinson’s, Peter’s blog, Off and On, describes living with Parkinson’s Disease in Anchorage, Alaska. Peter generously granted me permission to post the following article and cartoon from his blog. You can enjoy more of his postings at: http://offandonakpdrag.blogspot.com

The Mask

Article and Cartoon by Peter Dunlap-Shohl, Copyright © 2008

Anyone can see some of the damage Parkinson's disease visits on those who have it. Tremor and shuffling are painfully obvious. But there is another set of problems spawned by what you don't see.

With the loss of control of facial muscles we also lose a significant chunk of our ability to communicate. Instead of expressive smiles and frowns, we present a deadpan, blank mask that unnerves others.

Much of the sense of what we all say is not in the voice or words, but in the subtle visual cues and signals the face sends. We all interpret speech in the light of what we read in a person's expression. People with Parkinson's can slowly lose the ability to enhance communication this way without even knowing it.

Think about the problem of misinterpretation of e-mail. The sender composes a message in which the words seem clear as the send button is pushed.

The recipient looks at the cold, expressionless type on their screen, and without the guidance of the visual and tone cues that we all use to correctly interpret meaning, assigns meaning that isn't there. Often the missing meaning is misread, and the interpretation negative.

Then consider the way we get around this problem. We insert little faces that clarify our intent ;-)

This is exactly what those of us with Parkinson's Disease are not doing in face-to-face conversation. We are sending spoken email, without the emoticons :-(

Instead of this :-) , or this :-( , what we send is this :-| . Nothing but :-|

To complicate things further, we are often unaware that we are not sending the proper cues. And worse, as people look for these cues and cannot find them, they get frustrated, confused and eventually angry.

Once while taking care of some support group business at a bank with my friend Lory, I sensed rising irritation in our banker. I was at a loss as to the cause, but then realized she was interpreting our Parkinsonian lack of expression as anger. I stopped the rapidly deteriorating meeting, and explained our featureless expressions.

The change was immediate and dramatic. She went from grim to jovial in seconds flat. And Lory and I, having solved the mysterious problem, were elated :-|

 

Related Story:

The Frozen Mask of Parkinson's at:

http://katekelsall.typepad.com/my_weblog/2007/08/the-frozen-mask.html

 

 

 

Embarrassed and Flattered

I have to admit that I was both embarrassed and flattered to discover that I was featured in Bob Dawson's blog, Parkinson's Patients: Yes We Can Dance.

From his home in rural Quebec, Canada, Bob monitors the worldwide activities of Parkies who are trying to fend off the monster through dance and music. He spotted me playing my accordion in the flower garden. Thank you, Bob, for sharing my story at: http://parkinsonsdance.blogspot.com/2006/05/chapter-17.html

Keep on Dancing

From his home in rural Quebec, Bob Dawson posts on his blog, Parkinson's Patients: Yes We Can Dance. He reports amazing stories from around the globe about the benefits of dance for Parkinson's patients. His latest post is from Israel at: http://parkinsonsdance.blogspot.com/2009/02/chapter-15.html

Thank you, Bob, for sharing your collection of dancing with Parkinson's stories. They inspire me to keep on dancing.

9% of Proceeds toward the Parkinson's Cause

Mary Sullivan’s blog, Life with Shaky at http://www.lifewithshaky.blogspot.com/, is a touching account of sharing her life with her husband who has Parkinson’s Disease (PD).

Mary asked for my help in getting the word out about Deborah Fryer’s film SHAKEN. Deborah is offering discounts to persons with Parkinson’s (PWP) and their family and friends. 

The DVD’s online price is $150, but if you contact Deborah directly as a PWP, you can order the film for $29.99.  Support groups get a discount as well, at $75.  If you refer to Mary Sullivan’s blog, Life With Shaky, or refer to her by name when ordering, Deborah will donate 9% of proceeds from those sales back to the PD cause because every 9 minutes someone is newly diagnosed with PD.

Deborah Fryer can be contacted at:

Website: www.lilafilm.com

Email: deborah@lilafilms.com

Phone: 303-442-1966

I Has the Parkinson's

This guy is funny.

Author and comic Carl Hernz battles Parkinson’s disease with the only weapon he has–humor. He invites you down the path with him as he tries to figure out everything from symptoms to medications to just living life.

Visit his blog, I Has the Parkinson's at http://carlhernz.wordpress.com/

I Love My Blog

Just kidding. I intend to keep barking through my blog: Shake, Rattle and Roll. It's always working, even when I'm not.

 

For example on June 4, when I spent most of the day dancing with the Rockyettes, 136 readers viewed my blog..

 

When my husband, Tom, and I were on vacation on June 23, 186 folks took a peek.

 

When I had surgery to have the DBS battery replaced on July 15, 178 people stopped by.

 

When I was recovering (AKA sleeping) at home after surgery on July 18, 170 of you wandered in.

 

It doesn't matter if I'm dancing, vacationing, having surgery or sleeping, my blog is always open. Please continue to stop by. Your support and friendship mean a lot.

 

Kate Kelsall

Shake, Rattle and Roll

Welcome Photogirl

Join me in welcoming Photogirl to the Parkinson's blogosphere.

Photogirl's new blog, PDME can be located at: http://www.pdme.blogspot.com/

Photogirl was recently diagnosed with young-onset Parkinson's Disease at the age of 33. She has a husband and three young children.

I appreciate her honest and sensitive writing and hope you will enjoy it as well.

.

Life with Shaky

Welcome Mary Sullivan, a recent newcomer to the Parkinson’s-related blogosphere. She describes her blog, Life with Shaky, as the following:

Chronicles of my sometimes funny, sometimes sad, but always enlightening journey of a woman whose husband is diagnosed with Parkinson’s Disease.

Check out Life with Shaky at:
http://www.lifewithshaky.blogspot.com

Fifteen

Fifteen has become my lucky number.

I created this blog, Shake, Rattle and Roll, 15 months ago (September 27, 2006).

It has generated over 15,000 hits (15,718 at this moment) which translates into more than 1,000 hits per month.

This is my 155th post on this blog (10 posts a month for 15 months).

I am delighted that I have increased awareness and understanding about Parkinson’s Disease. Yipee!

Thank you, readers, for making it happen.

Kate

Caleb Interviews Kate about Parkinson's from the Insider's Perspective

Check out my interview with Caleb, owner and manager of a blog about Parkinson’s Disease at: www.myparkinsonsinformation.com. Thank you, Caleb, for your thoughtful questions I appreciated the opportunity to be interviewed by you. I am inspired by your mission to close the gap of information and understanding between professionals and the Parkinson’s community through your gift of writing,

Making Life Good

When I was 21, I was single, energetic and healthy. I was a student obtaining my Master’s in Social Work at the University of Wisconsin. At age 22, I met Tom, my future husband, and moved to Canada, and at age 24 we got married. Life was good.

At age 46, I was diagnosed with Parkinson’s (PD). Life was still good and continues to be good at the age of 58.

Yesterday I met IndyMama (Lynn) online. Lynn and I are the same -- both married and have PD. However, we are different in that Lynn is 21 years old, and she’s a mother, student, and employee with a genetic, family history of PD. Lynn grew up living in a home with PD when her father was diagnosed at age 39. Lynn began experiencing PD symptoms at the age of 18.

This week Lynn launched her new blog, Young Parkinson’s: My Journey. You will enjoy Lynn’s warm and personal style of writing. Her message is “You are not alone.” She is wise beyond her years (living with PD does that to you). Lynn welcomes comments and stories from her readers.

I can’t imagine what it is like to be a young wife, mother, student and employee with PD at the age of 21. However, after reading her blog, I know that Lynn’s positive attitude and determination will make life good for her and her family for many years to come.

Is it ModemDavid or Mogen David?

There is a new blog in the Parkinson’s Disease blogosphere called ModemDavids Parkinson Page. ModemDavid is a funny guy who describes his blog as:

Personal reflections/impact of Young Onset Parkinson's in life of a late-40's musician, husband, father and teacher. Metaphysical implications of disease, musings on life, music, poetry...

ModemDavid reminds me of my Dad’s favorite wine, Mogen David, which he kept hidden in the extra fridg in the garage and only brought out for special occasions like Thanksgiving. Mogen David comes in flavors such as Concord, Blackberry, and Wild Cherry. I remember all flavors tasting syrupy sweet like cough medicine. I never told Dad that I preferred California Chardonnay.

Check out some of ModemDavid’s humorous posts about living with Parkinson’s at:

http://modemdavidsparkinsonpage.blogspot.com/2007_09_01_archive.html

New Parkinson's Disease Online Resource Now Available

New Parkinson's Disease Online Resource Now Available
From: Medical News Today
Aug 2, 2007

Consumers searching for information on Parkinson's disease, a progressive neurological condition that affects more than 1.5 million Americans, now have a new online destination. The Parkinson's Disease Blog Network (http://www.parkinsonsblognetwork.com) is the first site to centralize these individual perspectives, helping consumers to quickly identify the most relevant and useful information for any given situation. Oversight by an advisory board of patients and medical experts ensures content accuracy.

"The Parkinson's community is highly motivated, frequently turning to the Internet as an outlet for support and information once they or a loved one have been diagnosed," said Dr. Neal Hermanowicz, a member of the Parkinson's Disease Blog Network advisory board and professor in the department of neurology and director of the Movement Disorders Program at the University of California, Irvine, College of Medicine. "The Parkinson's Disease Blog Network provides a reliable, centralized online source for those pressed for time or limited by access or ability."

The Parkinson's Disease Blog Network was developed and is maintained by Incendia Health Studios, an inVentiv Health company. It has been designed to serve as a real-time, virtual Parkinson's disease discussion and community forum, allowing users to exchange information and thoughts on topics ranging from symptoms to diet and treatment. All blogs registered on the network are listed with a brief descriptor and assigned to one of three categories: resource, medical or personal. Each includes a space for user comments, a five-point rating scale and also tracks the number of "views". This allows the blogs found to be the most useful to be most prominently featured.

Kate Kelsall, author of the site's top-rated blog, Shake, Rattle and Roll, explains, "Many of us with Parkinson's disease feel isolated and lonely. Even after diagnosis, we are scared of what lies ahead. Connecting online with others who have the same disease can be reassuring. By sharing hopes and providing support for each other, we find commonality and realize we are not alone."

Support for the development of the Parkinson's Disease Blog Network was provided by Valeant Pharmaceuticals International. To learn more or register your blog, visit http://www.parkinsonsblognetwork.com.

About Incendia Health Studios

Incendia Health Studios, is the first and only 'purpose-driven' media company in the field of chronic disease education. The company develops and distributes unbranded disease-education content targeting the millions of people who use the Internet and other digital technologies to seek and share information on chronic diseases. Incendia Health Studios is located at 8961 Research Drive, Suite 100, Irvine, CA 92618. For additional information, visit http://www.IncendiaHealth.com

About inVentiv Health

inVentiv Health (NASDAQ: VTIV) is the leading provider of commercialization and complementary services to the global pharmaceutical, life sciences and biotechnology industries. inVentiv delivers its customized clinical, sales, marketing and communications solutions through its three core business segments: inVentiv Clinical, inVentiv Communications and inVentiv Commercial. inVentiv Health currently works with over 200 unique pharmaceutical, biotech and life sciences clients, including all top 20 global pharmaceutical companies.

http://www.inventivhealth.com
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Article URL: http://www.medicalnewstoday.com/articles/78437.php

Main News Category: Parkinson's Disease

Also Appears In: Neurology / Neuroscience,