Growing up, I was a Personality Plus Wannabe. When my aunts described someone as having Personality Plus, it was a sincere compliment which meant that the person shined and glowed in social situations. In childhood, I had not acquired the social skills to be a Personality Plus.
At age 8, my parents and relatives said that I had the brains and that my brother had the personality. We interpreted this as I had no personality and my brother had no brains.
My friend, Diane Marty, who didn’t know me at age 8 and who I met at age 60, disputes the above: “Well, they were infinitely, unarguably, outrageously wrong -- on your account anyhow. I can't say anything about your brother, not knowing him. But if they are as wrong about him as they are about you, he is an Einstein.”
Thanks, Diane, for your much-needed compliment.
At age 9, I played in monthly accordion recitals at Quigley Music Studios in Kansas City. Suffering from a severe case of stage fright, with sweaty hands and a terrified grin on my face, I stood up and played “Parade of the Wooden Soldiers” on my heavy 120 bass accordion which was almost as long as I was tall. The evaluator’s comment on the 3 x 5 note card was “Her personality really projects, doesn’t it?” I wondered if he was describing my anxious personality or what other personality traits he observed.
In 1959 at age 10, the song “Personality" reached #2 for Lloyd Price. I remember him crooning:
'Cause you got personality
And of course you've got
A great big heart
So over and over
Oh, I'll be a fool to you
Now over and over
What more can I do?
At age 17, I overheard one of my aunts describe me as a “diamond in the rough.” Although she was well-intentioned, I always wondered if she meant that I had potential to be a Personality Plus girl.
From age 18 through age 60, I honestly don’t recall thinking much about personality –- what it was, whether I had any, or what kind of personality I had. Then on my 61st birthday, the personality issue once again surfaced.
After attending the World Parkinson Congress in Scotland, Joyce and Jim, my Scottish friends (who Tom and I met when we lived in Calgary, Alberta, Canada) took Valerie and me out for a beautiful day of touring the Scottish countryside. Over a delicious birthday lunch at Loch Lomond, we reminisced about our wonderful Canadian experiences. I was stunned when they described me in the past with words and phrases such as:
always being on the go
frequently entertaining and having people over for dinner with gourmet meals
arranging interesting and fun entertainment such as mystery dinners, ski weekends
spontaneous and impromptu, and
the life of the party.
They even produced a photo from 1986 to document their description (see below):
From left to right: Jim, Joyce, Kate, Tom in Calgary, Alberta, Canada in 1986
I couldn’t recognize the person they were describing. Perhaps in the past, I had been transformed into a Personality Plus gal and hadn’t even realized it.
On that particular day in 2010 in Scotland, after an exhausting week at the congress, I felt like I had Personality Minus, not Personality Plus. Being very quiet, reflective, and tearful, although I was at a party, I certainly wasn’t the life of it. I felt as though Parkinson’s had destroyed my personality with my masked facial expression, quiet breathy voice, sometimes stooped posture and shuffling steps.
On the other hand, I was happy to be reminded that once I had Personality Plus. I left Scotland with a lilt in my voice and a spring to my step.
I wake up stiff and sore. This is what it must be like when people say they feel like they've been run over by a truck. I have difficulty propelling myself out of bed. It’s one of the few times that I truly acknowledge to myself that yes, there is pain associated with Parkinson’s. I tell myself I’m still bouncing back from my trip to the World Parkinson Congress in Scotland. After traveling for 7 days and being home for 12 days, I worry that my Parkinson’s body has no further bounce. Perhaps this is my new normal.
My husband, Tom wakes, notices me hobbling around the room and says, “I don’t know how you’ll be able to dance with the Rockyettes this afternoon.” I pause and respond “I also can’t imagine myself dancing when I feel like this. Let’s see how I function after my session with Paul and Carolyn this morning.”
I take my anti-Parkinson’s meds and within an hour, my body starts to relax. I breathe a sigh of relief. Once again, I temporarily win my battle with rigidity.
My drive over to Paul and Carolyn Zeiger’s session is without incident. I walk in and start blathering about how difficult it was traveling to Scotland and my stiffness this morning and that I hope to dance in the afternoon and... They quickly determine that I need a restorative session to calm the chaos.
Carolyn looks at my file and announces that today is my 100th individual session. Even I’m impressed with my perseverance. Typically I’m an impatient patient wanting instantaneous results. But there is nothing quick about finding a treatment or cure for Parkinson’s, and so I march forward.
After Carolyn works her magic with Jin Shin Jyutsu and Paul with his masterful skills in yoga, I am restored to my pre-Scotland self. My chaos is calmed. As I leave, they give me the last rose of summer as a gift in celebration of 100 sessions. I promptly forget and leave the rose there only to remember later when driving home. My chaos may be calmed, but I’m still forgetful.
In the afternoon, I dance again without incident (except for placing my Mardi Gras mask upside down which could have been an incident if I didn't notice). “Without incident” is starting to feel very good.
Thank you, Paul and Carolyn, for your fine skills and your contribution to the Parkinson’s community.
In partnership, The Northwest Georgia Parkinson Disease Association, the National Parkinson Foundation, and the American Parkinson Disease Association are hosting this conference for families impacted by young onset Parkinson’s disease. This weekend-long event will offer programs for people of all ages who are living with Parkinson's, as well as an opportunity to network with peers from around the country. Being part of Saturday's keynote presentations will allow you to learn about tips for daily living, and ask advice from healthcare professionals experienced in working with people with Parkinson’s.
Approximate Running Time: 8 hours
9:00 - 10:00 AM EST
Future of Cell and Gene Therapies for Parkinson’s Disease
Penelope J. Hallett, PhD Instructor in Psychiatry, Harvard Medical School Member, Center for Neuroregeneration Research, McLean Hospital
10:30 - 11:30 AM EST
Clinical Research: Someone's Got To Do It
Stuart A. Factor, DO Professor of Neurology, Emory University Director, Movement Disorders Program
1:00 - 2:00 PM EST
Afraid It's All in Your Head: The Brain, Anxiety, and PD
Paul Short, PhD Licensed Neuropsychologist Private Practice, Elkridge, MD
2:15 - 3:15 PM EST
Intimacy and Sexuality in Parkinson's Making the Impossible — Possible
Gila Bronner, MPH, MSW Director & Founder, Sex Therapy Service, Sexual Medicine Center Sheba Medical Center, Israel
3:30 - 4:30 PM EST
Music, Motion, and Parkinson's Disease
Matt Ford, PhD, PT Faculty, Department of Physical Therapy University of Alabama
Feedback on above conference from Paul Zeiger:
The National Parkinson Foundation has made their recent conference available on the web. The talks are GREAT. Dr. Paul Short's presentation on PD and anxiety is a must for everyone with PD and their families. Start from http://www.parkinson.org/ and follow the link to the conference.
Dr. Short has also put up a website that emphasizes living well with PD for families (www.pdfso.org)
Slides related to his talk are under "Resources" on that site.
2010 Southeastern Parkinson Disease Conference, and the American Parkinson Disease Association, Northwest Georgia Parkinson Disease Association, the National Parkinson Foundation, Young Onset Parkinson Conference
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.
After returning from Scotland about a week ago, I am slowly bouncing back to my pre-World Parkinson Congress self. Despite the toll that traveling has taken on my weary body and tired brain, David Iverson’s presentation is one that I won’t forget.
World Parkinson Congress, Glasgow, Scotland, September 29, 2010
From Presentation by David Iverson entitled: Genetics and Me: Patient Perspective
David Iverson has been a producer, writer and correspondent for public broadcasting for 30 years. Most recently, he was the writer, correspondent and co-producer/director of the February 2009 PBS Frontline documentary My Father, My Brother and Me, which explored his family’s battle with Parkinson’s Disease. Iverson is based in San Francisco, where he also hosts radio and television programs for public broadcasting, including the Friday edition of Forum on KQED public radio.
The three Iverson men all have one thing in common: Parkinson's Disease.
Iverson provided an interesting perspective on genetic testing that I hadn't considered. While Iverson may want to consider genetic testing for himself, his decision impacts his entire family. If he decides to proceed with the testing while his family does not want to know the results, he has to live with the burden of the tests results, good or bad, and not be able to share with his family. Because of this, he has decided not to proceed.
Inspiring words in Iverson's presentation:
It's all about balance and hope
Hope doesn't get you out but it gets you through
Parkinson’s steals your movement and robs you of your voice
Life is fragile
Each of us has our own version of Parkinson’s with no operating instructions
The power of family and the promise of science
Time is our enemy, and time is our ally
The enduring power of the human spirit
Run with what you've got and keep running toward tomorrow
(The formatting is intentional, a pause at the end of every line)
Thank you Dr Lees for that kind introduction.
Good evening Ladies and Gentlemen.
I am truly honoured to have been given the opportunity to address this the Second World Parkinson Congress.
As you know the patient address at the First Congress was delivered by Michael J Fox.
I have been a fan of Michael's since I was a teenager.
One of my first trips to the cinema was with my sister Christine to see "Back to the Future" .
I thought it was a fantastic film.
As we left the cinema I said two things to Christine.
The first I have no problem with.
I said: "Michael J Fox is so cool.”
The second statement I am now not so sure about.
I said: “I wish I was just like him".
Four years on from the first Congress I am delighted to welcome you to Scotland. Many of you are new to Glasgow and I am sure you will enjoy your stay in this wonderful city. Glasgow is known throughout the world as a city of culture, as a city of invention and industry, and as you will discover a city inhabited by colourful, humorous and optimistic characters. For me Glasgow is a great place to have Parkinson's.
It is also the ideal place for our community of carers, clinicians, patients and researchers, to come together and plot the demise of this horrific disease.
As a patient, I extend a particularly warm welcome to the clinicians and researchers.
In the past four years you have been responsible for the improved understanding of Parkinson's, for the developments in methods of treatment, and for the identification of compounds with the potential to eradicate this unforgiving condition.
One day, you will cut the key that will unlock our bodies.
On behalf of the patients and carers I thank you wholeheartedly for your work.
All of us arrive at this Congress with a common goal.
To improve the lives of people with Parkinson's disease.
Everybody in this room has something to contribute. The clinicians and researchers bring extraordinary science and potential therapies to be discussed and dissected.
But this Is not just a science meeting.
This is a Congress.
This is a gathering of the whole Parkinson's community and the patients and carers bring an extraordinary contribution too.
We bring the experience, we bring the knowledge, and we bring the passion that comes from living with this disease.
The value of this experience, knowledge and passion should not be underestimated. The patients and carers bring something else to this Congress. Something that only a person who lives with this disease day in day out can truly understand.
What Martin Luther King referred to as the fierce urgency of now.
I’ve only been diagnosed a few short years and already I have had enough.
My wife and my two little girls have had enough.
My friends who have been walking miles, running miles, and swimming miles to raise awareness have seriously had enough.
Their aching limbs and cramped feet long for a cure almost as much as mine do.
A cure that’s been sitting tantalizingly below the horizon since before I was diagnosed.
A sunrise waiting to happen.
Every day I ask myself what can I do?
As a group of patients and carers what can we do?
What can we offer to advance the work of you, the clinicians and researchers?
We can offer you commitment, we can offer you cooperation and we can offer you collaboration.
Clinicians and researchers we can be your Advocates.
As Advocates we can dispel the myths of Parkinson's. The outside world believes this is a disease of elderly. We know it isn't.
The outside world believes there are drugs that will see you serenely through your life. We know there aren't.
The outside world believes the cure is five years away. We know people who were told that 30 years ago.
As Advocates we can mobilise ourselves to deliver volunteers for clinical trials more quickly.
As Advocates we can become positive nuisances; pestering politicians, badgering budget holders and nagging decision-makers.
As Advocates we can express ourselves and the concerns of our community in a way which will deliver results. As a community of Parkinson's Advocates we can be a resource for you the clinicians & researchers.
But to be effective we need your commitment, we need your cooperation And we need your collaboration.
We need your support and your encouragement to bring the value of our experience knowledge and passion to bear.
We need your guidance to plan our journey, to point us in the right direction, and to propel us to the destination all of us here want to reach.
A partnership of equals.
This Congress is not just for the scientists to demonstrate what they hope to do for the patients, it is also an opportunity for us the patients to demonstrate what we can do to eradicate Parkinson's.
If the delegates whose life’s work is Parkinson's, collaborate with those who live with Parkinson's, together we can deliver a future without Parkinson's.
But the road must start here.
The opportunity exists this week. In this city. At this Congress.
Urgency. Ladies and gentlemen, Urgency. The fierce urgency of now. Now is the time to realise the promises of science.
Now is the time to bring our urgency to bear and deliver a future of hope for the victims of this disease.
Now is the time for a steady hand, a strong voice and a keen sense of smell for the opportunities that await us.
A steady hand.
A strong voice.
A keen sense of smell.
I had them once.
I want them back.
Welcome to Scotland. Welcome to Glasgow. Welcome to the World Parkinson Congress.
Thank you very much.
To learn more about Bryn Williams (AKA Wobbly Williams) check out his websiteat:http://www.wobblywilliams.com
I participated in the first Victory Summit in Westminster, Colorado in October 2008. The enthusiasm and positive energy at the event were contagious. The leaders got the audience moving, dancing and exercising. No thoughts of “woe is me” could exist in such an uplifting environment. I did not hear words such as “victim” or “suffer.” The speakers were top-notch. I appreciated the opportunity of being on the DBS patient panel. I left feeling inspired and hopeful.
Kate Kelsall, Parkinson’s Patient, Denver, Colorado
The Victory Summit Travels to the Western Slope to Grand Junction
What:The Davis Phinney Foundation in partnership with the Parkinson Association of the Rockies will host an informational and inspirational Victory Summit™ to share the latest advances in science, exercise, and care and to inspire living well with Parkinson’s.
When:Friday, October 15, 2010, from 9:30 a.m. to 2:00 p.m.
Where:Two Rivers Convention Center, 159 Main St., Grand Junction, Colorado
Cost: There is no charge to attend.
The content of the Victory Summit includes:
vLiving Well with Parkinson’s
vParkinson’s research update
vExercise: “How to Stay Active for the Rest of your Life”
vBenefits of yoga
vCaregiver tools and guidance
vPanel discussion on deep brain stimulation surgery
Victory Summit Speakers:
Melanie Brandabur, MD, MDS Clinical Director, Parkinson’s Institute, Sunnyvale, California
Lauren Schrock, MD, Co-Director of the Movement Disorders Program at the University of Utah, and the Director of the Surgical Movement Disorders Program
Heather Ene, Assistant Professor of Physical Medicine and Rehabilitation at the University of Colorado Denver. How to Register
Registration information for the Victory Summit is available online at
FROG IN YOUR THROAT? LOST YOUR VOICE? CAT GOT YOUR TONGUE?
DBS Voices of the Rockies
A Nonprofit 501(c)(3) Advocacy and Educational Organization Dedicated to
guiding patients and their families through the dbs (deep brain stimulation) experience
Reserve your seat now for this rare opportunity to participate in a workshop led by Mary Spremulli, MA, CCC-SLP, the creator of Voice Aerobics™.
Ideal for newly diagnosed as well as advanced Parkinson’s patients, their families and caregivers as well as specialists who work with them, this interactive discipline focuses on exercises to improve and maintain speech. Come prepared to use your voice and have fun!
WHAT: Parkinson's Disease: Impact On Voice, Speech And Swallowing
What You Need To Know And What You Need To Do
WHEN:Saturday, October 30, 2010 from 1:00 to 3:00 p.m.
WHERE:Second Floor Conference Center, Spruce C Room in the
Swedish Medical Center, 501 East Hampden Avenue, Englewood, CO 80113
HOW: Contact Kate Kelsall at firstname.lastname@example.org or 303-252-9796 to register or for further information
Co-sponsors of this event include the Colorado Neurological Institute,
Medtronic Neuroscience and the Davis Phinney Foundation
enter the main entrance on the south side of the hospital.
Wheelchairs will be available in the lobby. There is no valet service on Saturdays.
Free parking in the ramp across the street from the south entrance.
Space is limited. Space is limited.Space is limited.
This workshop is free and open to the public.
Donations to DBS Voices of the Rockies are greatly appreciated!