Shake, Rattle and Roll

Making Peace with Parkinson’s

I personally don’t like New Year’s resolutions. I've had a long history of making them and breaking them. Instead of resolutions and goals, I prefer creating a theme for the upcoming year. My theme for 2012 is Making Peace with Parkinson’s.

In a brief ah-ha moment, I realized that I’ve experienced many feelings about living with Parkinson's during the past 15 years. I’ve denied having PD, attempted to keep it in the closet and covered up, been angry and frustrated with it, mocked it, battled it, feared it, been terrified of it, been depressed about it, been embarrassed and shamed by it and been anxious and worried about it. But…I’ve NEVER accepted or made peace with Parkinson's.

The Serenity Prayer will be my guide on my path in learning how to make peace with Parkinson’s. I look forward to experiencing many moments of peace and inner serenity as a result of this journey.

Celebrate the Year of Making Peace with Parkinson's.

 

Back to the Basics

When I worked  in my high-powered  career  as a Certified Public Accountant, I frequently set goals at year end.  My focus was on goals that were specific, measureable with exact deadlines, and that would lead to progress up the corporate ladder.

It seems like a lifetime ago.

Living with Parkinson’s for more than 15 years has forced me to become more flexible in my goal-setting or rather my lack of goal setting. My  goals now are quite basic: get up in the morning when I can maneuver my body out of bed, take my Parkinson’s meds every three hours during the day, walk the dog when my legs can move, respond to my email when my fingers can type, do errands when my PD meds are working, respond to telephone calls when my voice has some strength. work on my book when my brain is functioning, dance and do yoga when I have some rhythm, and prepare meals when my hands are not too shaky.

My day-to-day activities currently hinge on how my Parkinson’s body and brain are working. But lately, as my Parkinson’s progresses, my body and brain have become so  unpredictable.  For example, if my voice seems  strong during  the first five minutes of a conversation, it doesn’t mean that it won’t turn weak in the sixth minute. Or when I function well with movement, I generally don’t speak well and vice versa. I know I’m greedy. I want it all—to both walk and talk and simultaneously—imagine that!

Sure, I frequently push myself beyond the basics,  and I’m glad that I still have the perseverance to do so.

So I won’t be staying up late tonight making a list of my goals with deadlines. More likely, my husband and I will fall asleep watching TV at 9:00 PM and set the alarm for midnight so we can welcome the new year.

Happy New Year!

 

Our Favorite Things

Ten days ago my husband, Tom was in a car accident. While he was waiting in traffic, his car was rear-ended. The airbags of his car didn’t deploy, and we later learned that airbags don't deploy in rear end crashes. His steering wheel pushed into his upper body. Tom suffered pulmonary contusions (bruising of his lungs and chest) and was hospitalized for two days.

Fortunately, he is recovering. When Tom was being admitted to the hospital, one of the questions asked was “What do you need right now?” Tom quickly responded with “I need to have dinner with my wife and walk our dog.” His list of needs expanded as the day progressed and later included “I need to be OFF the liquid diet and be eating REAL food.” His list surprisingly never included a car to replace his inoperable one.

There is nothing like an accident to put things in perceptive. It forced us to appreciate what is important in life—simple every day things such as eating dinner as a family and walking the dog. It is seldom material things that are among our favorites; more often it is visiting and sharing experiences with friends and family that are the highlights of our lives.

Yesterday, Tom and I received one of our favorite things as a Christmas gift. In March, we adopted Rusty, a fearful and nervous English Springer Spaniel, from a local animal rescue. Rusty was abused by one of his previous owners. He was terrified when he saw a leash or a belt and skittish around all men. Trying to get him on a leash (even with a no-pull harness) and out for a walk seemed like an insurmountable task. However, we persevered and were able to get Rusty out for a walk a handful of times since Thanksgiving. Yesterday, Christmas Day, Tom and I took a family walk with Rusty, and we both repeatedly said, “This is the exactly what I wanted for Christmas – to take Rusty for a walk on a leash.” Rusty may also have even enjoyed it as I observed his wagging tail and his smiling face.

I’m challenging myself to identify my favorite things (and people and experiences) and fill my life with them in 2012. I challenge you to do the same. Check out “My Favorite Things” from the show “The Sound of Music” as well as the humorous version as performed by Julie Andrews at the Radio City Music Hall, New York, in October 2004.

MY FAVORITE THINGS From the Broadway Show "The Sound Of Music" (1959) (Richard Rodgers/Oscar Hammerstein II)

Raindrops on roses and whiskers on kittens

Bright copper kettles and warm woolen mittens

Brown paper packages tied up with strings

These are a few of my favorite things

Cream colored ponies and crisp apple streudels

Doorbells and sleigh bells and schnitzel with noodles

Wild geese that fly with the moon on their wings

These are a few of my favorite things

Girls in white dresses with blue satin sashes

Snowflakes that stay on my nose and eyelashes

Silver white winters that melt into springs

These are a few of my favorite things

When the dog bites, when the bee stings

When I'm feeling sad

I simply remember my favorite things

And then I don't feel so bad

Humorous version as performed by Julie Andrews at the Radio City Music Hall, New York, in October 2004:

Maalox and nose drops and needles for knitting

Walkers and handrails and new dental fittings

Bundles of magazines tied up in string

These are a few of my favorite things

Cadillacs and cataracts and hearing aids and glasses

Polident and Fixodent and false teeth in glasses

Pacemakers, golf carts and porches with swings

These are a few of my favorite things

When the pipes leak, when the bones creak

When the knees go bad

I simply remember my favorite things

And then I don't feel so bad

Hot tea and crumpets and corn pads for bunions

No spicy hot food or food cooked with onions

Bathrobes and heating pads and hot meals they bring

These are a few of my favorite things

Back pains, confused brains, and no fear of sinnin'

Thin bones and fractures and hair that is thinnin'

And we won't mention our short shrunken frames

When we remember our favorite things

When the joints ache, when the hips break

When the eyes grow dim

Then I remember the great life I've had

And then I don't feel so bad

Coping with the Challenges of Chronic Illness

For the past month, I felt sorry for myself living with Parkinson’s. I was weary from putting on a smiley face and being positive.

Then I got inspired.

Thankfully, what got me out of my funk was reading the article about Meredith Vieira and Richard M. Cohen’s thriving as parents and partners while managing his chronic disease, multiple sclerosis (MS). MS is a chronic, progressive, nerve-destroying condition that frequently results in poor balance, limited strength and blindness.

The following tidbits from the article motivated me:

While chronic illness affects the couple’s life, it doesn’t define their life.

The couple adjusts to Cohen’s increasingly uncooperative body with a mix of realism and denial.

Cohen’s favorite coping mechanism is denial –not necessarily of the present condition but of his future.

There’s no point of losing a good day today, over the possibility of a bad day tomorrow. Cohen says, “I deny the certainty of possible outcomes.”

Chronic disease can challenge one’s faith in the future as well as one’s sense of self-worth.

It is important to keep pain and frustrations from poisoning relationships in the family.

Adapting to a chronic disease is a lifelong process. With each new loss of function, the patient and his or her family must adjust to the new limitations.

Families must learn to function without chronic disease monopolizing everyone’s attention. It is important that the family openly discuss the chronic disease but not be obsessed by it.

The course of chronic disease often parallels the indignities of aging. But with chronic disease, the process is accelerated and tinged with cruelty.

Cohen says: “People feel oddly responsible for their illnesses…It makes no sense…”

It is important to focus on what can be changed and controlled in one’s illness, not aspects which are beyond control.

Cohen’s family doesn’t consider MS to be a blessing. However, as a result of growing up around a chronic disease, his children have learned to be empathetic and patient human beings.

I encourage you to read the entire article and also get inspired at:

Stronger Together

By Margaret Guroff | from: AARP The Magazine | Dec. 2011/Jan. 2012 issue

http://www.aarp.org/relationships/friends-family/info-11-2011/vieira.html

 

 

Gratitude

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow." ~ Melody Beattie

Happy American Thanksgiving

Thursday, November 24, 2011

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

 

Awkward Hands Move at a Snail’s Pace

One of the most troubling symptoms for those with Parkinson’s is bradykinesia, which is just a fancy word for slow movement. I’m grateful (alleluia) that my tremor and dyskinesia have subsided with help from a great Deep Brain Stimulation (DBS) programmer and medication adjustments. However, I continue to be plagued by slow and stiff movement, particularly in my hands. I find it ironic that before Parkinson’s, I could talk and walk fast, eat quickly, play the accordion at a fast clip, type 99 wpm without errors, complete university in three years, work three jobs simultaneously, and overall function as an efficient and fast-moving person. People previously described me as an Instant Person.

With Parkinson’s, particularly when my medication and DBS stimulation aren’t working at an optimum level, life seems in slow motion and particularly my hands move at a snail’s pace. For example, sometimes buttoning my blouse, zipping my jacket, turning the key to open the door, folding a sheet of paper and putting it in an envelope, putting a stamp on an envelope, handwriting, taking coins and bills out of my wallet, eating with a fork, preparing or cutting food, putting on makeup--all can seem like insurmountable tasks with my awkward hands. No fast-moving hand-jive for me.

While it is possible that occupational therapy could help with my awkward hands and improve the speed of my fine motor skills, it is more likely that medication and DBS programming adjustments would help.

For now, I resort to setting my alarm clock an hour earlier than I would if I didn’t have Parkinson’s, knowing that my hands are likely to move at a snail’s pace.

An Opportunity to Meet, Move and Learn

I am still soaring from the weekend at the 6^th Annual Southeastern Parkinson Disease Conference in Atlanta, Georgia. Organized by the National Parkinson Foundation/Georgia, the conference was from October 14-16, 2011. While I’ve attended many Parkinson’s conferences, this one was particularly meaningful.

It was a conference planned by persons with Parkinson’s, geared to persons with Parkinson’s and their care partners. It wasn’t a conference planned by doctors who spoke condescendingly to Parkinson’s patients. We were all the same.

It was a conference where the attendees were from all walks of life (including doctors who’ve had to quit their practices because of being diagnosed with Parkinson’s), and persons of all ages and stages of the disease.

It was a conference that was considerate of its participants, scheduling half hour breaks between presentations to move around and socialize, and provided a night owl suite from 9 PM to 8 AM with snacks, cards and board games for those with Parkinson’s unable to sleep. It was a conference that was FUN--Imagine that!

Dressing up in costumes of the 50s, 60s, 70s, and 80s and dancing to the music of earlier eras gave us the opportunity to feel normal and escape Parkinson’s, even if only for several hours.

It was a conference that oozed of hospitality with its smiling participants with southern drawls and food and comfortable hotel rooms.

It was a conference that provided a wonderful opportunity to learn. Three of my favorite presentations, all involving audience participation, were:

Dance and Movement by Pamela Quinn http://pamelaquinn.net/press/the-magic-of-dance-for-parkinsons

Voice Aerobics by Mary Spremulli http://www.voiceaerobicsdvd.com/

Movement, Music and PD by Matthew Ford http://www.uab.edu/pt/faculty/11-faculty/7-matthewford and

http://blog.al.com/living-news/2009/04/fighting_parkinsons_disease_wi.html

All three presentations reinforced the themes to keep moving, get out there and do something that you enjoy, and if it’s FUN, you will more likely continue.

In other words, the weekend was PURR-FECT.

To learn more about this conference, check out their website at:
http://www.gaparkinsons.org/

 

Shaky Paws Grampa Has Arrived

... and just in time for the 6th Annual Southeastern Parkinson Disease Conference in Atlanta, Georgia from October 14-16.

FOR IMMEDIATE RELEASE

Innovo Publishing LLC Releases Carson and His Shaky Paws Grampa by Kirk Hall.

Summary/Description: Innovo Publishing LLC released Carson and His Shaky Paws Grampa, Book 1 in the Shaky Paws Grampa series. Shaky Paws is a story about the relationship and love between a seven-year-old boy and his grandfather who has Parkinson’s disease and essential tremor. This book is available now in the U.S. and internationally in hardback, paperback, Apple iBook, Amazon Kindle, Barnes and Noble Nook, and Google Android editions.

Memphis, TN – October 12, 2011 – Innovo Publishing LLC released a new title, Carson and His Shaky Paws Grampa, written by Kirk Hall and illustrated by Alison Paolini. Both the author andillustrator live with Parkinson’s disease (PD) as do an estimated 6 million people worldwide, with 50,000–60,000 new cases being diagnosed each year in the U.S. alone. The author—and approximately 10 million other Americans—also lives with another movement disorder called essential tremor (ET).

Carson and His Shaky Paws Grampa, Book 1 in the Shaky Paws series, is designed to help parents and grandparents comfortably talk about the initial symptoms of PD and ET and address common questions and concerns children may express. This loving story blends well with Paolini’s charming watercolor illustrations and is written with words simple enough for a child to understand. Based on the author’s personal experience with Parkinson’s and ET, Hall’s approach to this important topic isgentle and effective in reducing concerns with children and younger family members and friends.

Carson and His Shaky Paws Grampa not only deals with symptoms of PD and ET, but it touches on an innovative and effective treatment the author successfully underwent called deep brain stimulation (DBS). DBS has resulted in a remarkable quality of life improvement for the author, which he writes about in his book. Carson and His Shaky Paws Grampa is the first book in the planned Shaky Paws Grampa series and will be followed by additional titles that gently explore the more advanced stages of PD.

Hall will be showcasing and signing his book at the 6th Annual Southeastern Parkinson Disease Conference in Atlanta, Georgia. The conference begins October 14 and ends on October 16. A portion of the proceeds from the sale of this book will be donated to support Parkinson’s and essential tremor research and awareness.

Carson and His Shaky Paws Grampa has been enthusiastically endorsed and supported by a number of Parkinson’s and essential tremor research and philanthropic organizations including the following:

“Wonderful story. So warm, thoughtful, and heartfelt. Loved it! A must-read for anyone with ET or PD.” —Catherine S. Rice, Executive Director, International Essential Tremor Foundation

 “. . . a charming story that provides helpful guidance to PD patients for answering their grandchildren’s innocent questions.”  —Margaret Anne Coles, Program Manager,Muhammad Ali Parkinson Center/Barrow Neurological Institute

“. . . a fabulous book with remarkable illustrations.” —Cheryl Siefert, Executive Director, Parkinson Association of the Rockies

 “Great story that touches on DBS surgery and its dramatic positive effects.”—Ben Petrick, former Rockies/Tigers baseball player and Parkinson’s patient who has had DBS surgery

“. . . demystifies Parkinson’s for the youngsters in your family.” —Joel Havemann, retired Los Angeles Times editor, author of A Life Shaken: My Encounter with Parkinson’s Disease

Carson and His Shaky Paws Grampa, Book 1 in the Shaky Paws series, is available now in the U.S.and internationally in hardback (ISBN: 978-1-936076-91-8), paperback (ISBN: 978-1-61314-009-3), Apple iBook for iPad, iPod, and iPhone; Amazon Kindle; Barnes and Noble Nook; and Google Android editions. Large wholesale orders may be placed by contacting Innovo Publishing at info@innovopublishing.com or calling 1-888-546-2111. Wholesale orders may also be placed viaBaker & Taylor and Spring Arbor distributors.

About the Author: Kirk Hall lives in Colorado with his wife of 42 years, Linda. Their two sons and their families live nearby. He was diagnosed with ET in 1991 and PD in 2008 and had successful DBS surgery for tremor stemming from both conditions in 2011. Kirk has participated in a variety of clinical research studies at the University of Colorado hospital and the National Institutes of Health in Bethesda. Kirk and Linda are active members in the Parkinson’s Association of the Rockies. He is also a member of TeamFox. Their active lifestyle includes skiing, camping, hiking, golf, tennis, workouts at the local recreation center, bike riding, babysitting, watching grandkids play sports, and more. They are also involved in the life of their church where Kirk is a member of the choir. He recently tried ziplining in Costa Rica and loved it!

About the Illustrator: Alison Paolini lives in Northern California where she enjoys a multitude of creative activities. She studied acting and set design in New York and fine art with illustration at California State University at Northridge. She also taught “Drawing On Your Imagination” for eight years at The Paradise Art Center and shows her work at local art galleries. 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. Alison was diagnosed with Parkinson’s in 1999 and believes firmly that staying creatively active is crucial in coping with the disease.

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/videos 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 and many more. Innovo publishes Christian fiction and non-fiction 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

The Empowered Patient

The Empowered Patient: How to Get the Right Diagnosis, Buy the Cheapest Drugs, Beat Your Insurance Company, and Get the Best Medical Care Every Time (Paperback) by Elizabeth Cohen

If you are interested in taking charge of your own health care and/or if you are responsible for someone’s care, this book is for you.

This book is full of compelling stories that illustrate the problems that patients encounter in health care and provides concrete, practical solutions. The worksheets in the appendix provide examples of what to say and do and can be modified for one's own situation.

Topics covered in the book include: finding the right doctor, asking the right questions for the best treatment, making the most out of short office visits, preventing a misdiagnosis, cutting costs on prescription drugs, harnessing the power of the Internet for learning about medical issues, fighting back when insurance claims are denied and keeping safe in a hospital.

I highly recommend this book as a means to learn how to take back your health care into your own hands. It is available on Amazon.com for around $10.

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

 

It Consumed Me

Parkinson’s was in my thoughts and body 24/7. I allowed it to take over and become my identity. It moved in, took up residence and became a roommate that I couldn’t seem to evict. It turned my life off kilter, and I felt incapable of restoring balance. I became a one-dimensional, boring person, preoccupied with it, thinking about it, talking about it, listening to it, and studying it.

I had enough of it and was determined to find some possible solutions to deal with it. I developed the following strategies:

Remind myself that I am not my disease.

Don’t label or define myself by Parkinson’s. Words are powerful and calling myself or others “Parkies” even in jest, can be minimizing.

Focus on what I can do with Parkinson’s instead of what I can’t do.

Hang out with people who don’t have Parkinson’s.

When introducing myself to a new person, describe myself in ways that don’t involve Parkinson’s or its symptoms. Don’t allow Parkinson’s to be high on my list of how I describe myself because it may prevent more valuable qualities and traits from emerging.

Allow myself a set period of 15 minutes every day to think about, stew about or worry about Parkinson’s.

Establish Parkinson’s-free times when I don’t speak about Parkinson’s.

Go on a vacation and leave Parkinson’s at home.

Be selective when choosing volunteer activities. Learn to become comfortable saying “no” to activities that don’t enhance my life and choose activities that match my values and interests.

Lead a healthy life by attending to all of my needs – physical, emotional, intellectual, relationship and spiritual.

Although this self-improvement program is a life-long process, these strategies will help me to live well with Parkinson’s instead of being consumed by it.

Caregivers – Your Opinion is Needed

 
Caregivers and care partners aren't usually asked their opinion about their communication with the Parkinson’s patient and how it impacts them.

However, Dr. Jessica Huber, a researcher at Purdue University, wants your opinion and is currently conducting an online survery for caregivers/care partners regarding speech and voice and a new device intervention for improving communication.

Spend 15 minutes completing this worthwhile survey. You will be contributing to the knowledge about the effects of treatment for speech impairments in individuals Parkinson’s disease on caregiver burden. The link to the survey: https://www.surveymonkey.com/s/SpeechVive

 

SpeechVive Research Participant Information Sheet

SpeechVive™ Survey for Caregivers for Individuals with Parkinson’s disease

Researcher: Jessica E. Huber, Ph.D, Purdue University Department of Speech, Language, and Hearing Sciences

Purposes of Research: The purpose of this research is to survey caregivers of individuals with Parkinson’s disease and gather information regarding SpeechVive™, a new treatment for reduced vocal loudness levels (hypophonia) related to Parkinson’s disease.

Specific Procedures to be Used: We will provide you with a survey to complete regarding a new treatment for speech impairments in individuals with Parkinson’s disease, SpeechVive™.

Duration of Participation: The survey should take approximately 15 minutes to complete. The survey can be emailed or mailed to you. We can process your answers over the phone, or we can bring the survey to you in person. The survey can be accessed online.

Risks to the Individual:  Participating in the survey is of minimal risk to you, equal to that which is found in everyday life. Some of the material on the survey may be considered sensitive or distressing. There is a risk of breach of confidentiality. However, safeguards are in place to minimize this risk.

Benefit to the Individual or Others: There are no direct benefits to subjects. By completing the survey, you will be contributing to our knowledge about the effects of treatment for speech impairments in individuals Parkinson’s disease on caregiver burden. This knowledge may help to improve speech treatments for people with Parkinson’s disease and reduce caregiver burden associated with treatment.

Compensation: There is no compensation for participation in this study.

Extra Costs to Participate: There are no extra costs for you related to your participation in this study.

Confidentiality: Your confidentiality will be kept throughout the duration of the study. When the results of this research are published or presented at scientific meetings, your identity will not be disclosed. Your responses to the survey will not be released at any time with your personal information. Records that contain personal identifying information and materials generated by your participation in this study will be kept in a locked cabinet in the speech physiology laboratory (B24 Heavilon). Records with personal identifying information will be stored separate from any records of data collected from you. All data will be maintained and analyzed on a password protected computer in B24 Heavilon. Only the investigators and lab associates who are working on the project will have access to your records and data. All records and data files will be kept indefinitely. The data files may be used for future studies, but your name will not be associated with your records. If they are eventually destroyed, papers will be shredded and computer files will be deleted. The project's research records may be reviewed by departments at Purdue University responsible for regulatory and research oversight.

Take Charge of Your Post-DBS Speech and Swallowing Concerns

Motor symptoms in Parkinson Disease show good response to Deep Brain Stimulation (DBS). This surgery generally reduces tremor and dyskinesia, whereas speech and swallowing dysfunction typically do not improve and may even worsen.

Ask yourself these questions?

Since your DBS surgeries, do you get frustrated when your neurologist always asks how many times have you fallen, but never inquires about your speech, voice or swallowing concerns?

Despite many LOUD sessions, do you feel like a loser that you can’t speak loudly or clearly enough to be heard and understood?

Do you feel greedy for wanting to be able to both talk and walk after DBS?

Do you feel guilty for wanting both a competent neurosurgeon for your DBS as well as a competent programmer after DBS?

Have you given up your dreams of improvement of your speech, and instead withdrawn and allowed others to speak on your behalf?

If you answered “yes” to any of the above questions...

Don’t get frustrated, don’t feel like a loser, don’t feel greedy, don’t feel guilty and don’t give up!

Finally, there is a program that really seems to get it. The Voice Aerobics program may be able to offer some practical strategies to help you deal with the speech, voice and swallowing challenges you have experienced since your DBS surgeries.

Check out the Voice Aerobics website at www.voiceaerobicsdvd.com and an article from a speech therapist's perspective, Parkinson's Speech and DBS: Where Is The Speech Pathologist When It's Time To Program? at http://voiceaerobicsdvd.blogspot.com/2011/08/parkinsons-speech-and-dbs-where-is.html 

Tuesday, August 16, 2011

Playing with Parkinson's -- The Documentary

http://www.playingwithparkinsons.com/Welcome/The_Documentary.html

"You don’t need to know how to play an instrument to make music.  Just grab the nearest bowls and stir.” – Musician Sangeeta Michael Berardi, CA

If you passed Sangeeta Michael Berardi on the street you would see - if you noticed him at all - a little guy; looks to be in his sixties, walking not quite steadily, his hands shaking, his jaw twitching.  But if you walked on by you’d be passing one of the most remarkable men you might ever get to meet. – Filmmaker Burrill Crohn, NY

July, 2011

The upcoming documentary Playing with Parkinson’s is about musician, writer, painter, poet, mediator and philosopher Sangeeta (his spiritual name meaning “Divine Song”) Michael Berardi.  In the sixties, along with recording under his own name and on the recordings of others, he played guitar with trombonist Roswell Rudd, saxophonist Archie Shepp, pianist and harpist Alice Coltrane (saxophonist John Coltrane’s wife) as well as other leading figures of free/avant garde jazz. Award-winning documentary filmmaker Burrill Crohn captures Sangeeta’s world as he, since his diagnosis with Parkinson’s in 2000, continues to open up to the disorder and becomes awed and spiritually strengthened by its challenges.  Playing with Parkinson’s illuminates how an individual “converts ‘disabilities’ into new abilities.” His earthy wisdom and courage has inspired not only family and friends but also the filmmaker.  They’ve become distant friends (three-thousand miles apart) and collaborators on the documentary. 

Now, fifteen years later, Sangeeta has gone into a recording studio to make music again, joined by musicians from previous recordings.  No, it wasn’t the fiery, virtuosic music of his past but a music of the present, born out of the person he is today, Parkinson’s and all.

Sangeeta’s goal it to “translate the unique rhythms of my Parkinson’s tremors into musical statements.” – Burrill

“I will be using a guitar,” Sangeeta said, “though in a different way than before.  Other instruments might be bowls and spoons, or my pill containers in a bag, or almost anything that will translate shakes into sound.  I will also use my voice, modulated by Parkinson’s grip on my vocal cords, as an instrument as well.   We have some amazing musicians on this date and I won’t be able to keep up with them technically, nor do I expect them to limit themselves to what I can or can’t do on my instruments.  The challenge will be whether we can merge on a new common ground based on sound, intention and what I like to call the “virtuosity of the soul.”

View Sangeeta behind the bowls: http://www.youtube.com/watch?v=qoVVx6NYoew

Here’s a clip of Sangeeta singing “Mr. P.”, his whimsical name for Parkinson’s:

http://www.youtube.com/watch?v=5KUbNE6R2A8&feature=related

Yes, this is a film about music, and also the burdens life can put upon us sometimes.  It is also a film about Parkinson’s disease, and how someone like Sangeeta converts “disabilities” into new abilities. But, at its heart, this is a film about the human spirit, transcendence and the everyday heroes (the last word Sangeeta would use about himself) that walk among us.   - Burrill

Playing with Parkinson’s has initially been funded by friends, family and generous strangers (now strangers no more), through Kickstarter:

(http://www.kickstarter.com/projects/1033639232/playing-with-parkinsons-documentary)

The goal of $9,500 was surpassed early. Now, the task remains to find the capital to complete production.  Sangeeta’s faith in the work is what has brought the film to this point.  He continues to push beyond his physical boundaries to communicate to the world through his music, his drawings, his love and spirituality.  You see, Sangeeta has no illusions about where the path of Parkinson's (or Mr. P as he calls it) ultimately leads ("Maybe God will be kind", he says, "and let me get hit by a train or a truck and I won't even see it coming."). But that will be then. Meanwhile, this is now and he fills each moment with courage, determination, zero self-pity and plenty of joy.

My dream is that the film will help folks with disabilities that face difficult challenges daily to tune in to what they can still do instead of focusing on what they cannot do.  I know this way of tuning in has generated hope in me & helps my spirit stay positive & strong.  It’s kind of like focusing on the donut not the hole. The potential for the film to do good in the world is what keeps us going – Sangeeta

Playing with Parkinson’s http://www.playingwithparkinsons.com/Welcome/The_Documentary.html

For more information, please contact Cheryl K. Symister-Masterson at cherylksm@yahoo.com,

A Son Reminisces about His Father

My brother, Tom Doyle, contacted me to remind me that today would have been our Dad's birthday. Our Dad died in 1995.

He shared his memories...

I remember Dad going around the house stating emphatically again and again that “If you act enthusiastic.. YOU WILL BE ENTHUSIASTIC!!!” It was the Dale Carnegie motto.

I also remember mom thinking that dad was not quite as funny as he thought. ”Dennis, you laugh at your own jokes” (I get a little of that around my house).

I remember dad practicing his “bowling” in the front room. a one, two, three—release. I remember dad getting a small trophy for the most improved bowler (sports were never his forte). I think the trophy was a bronze belt buckle or …I might be dreaming.

He was a good hunter and a good beer drinking fisherman who never caught a fish, regardless if it was at Lake Estes or on the farm.

I remember his observations about shopping.”Have you ever seen so much stuff that you don’t need?”

And his insight on the costs of things “It’s higher that a Cat’s back!”

Breakthrough Inspires Hope in the Parkinson’s Community

More than fifty members of the Bionic Brigade met last Friday for our monthly meeting. Our group was formerly known as the Denver Deep Brain Stimulation (DBS) Support Group until one member complained about the word “support” saying he never needed any support before DBS and wasn’t about to need it now. We changed our name to Bionic Brigade to more accurately reflect our upbeat attitude. 

I don’t know if we needed support last Friday, but we certainly needed hope. With our friend, Valerie, at home suffering from complications from multiple DBS-related surgeries, we definitely needed something to look forward to for ourselves and future generations for those battling Parkinson’s Disease.

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all.  ~Emily Dickinson

We received just the right dose of hope from our speaker, Dr. Curt Freed, Professor and Head, Division of Clinical Pharmacology and Toxicology, University of Colorado School of Medicine, who spoke on a recent research breakthrough. Dr. Freed, along with Wenbo Zhou, PhD, have found that the drug, phenylbutyrate halts the progression of Parkinson’s in its tracks-- in mice anyway.  

But researchers Freed and Zhou also discovered that the drug, phenylbutyrate, could activate the gene, DJ-1, that protects dopamine neurons in people with Parkinson’s  Disease. If it works in humans, it could prevent the progression of the disease by turning on a protective gene in the brain.

The researchers studied this drug with 12 patients who were recently diagnosed with Parkinson’s and determined its safety in humans. The drawbacks of this drug are that patients need to take large doses of large pills, many times a day, and the high cost of the drug.  The next study will use this drug in a liquid form.

Dr. Freed is currently applying for several million dollars in funding for a future study of hundreds of people over several years. He is looking for people and who are relatively recently diagnosed and who are not taking other drugs for their Parkinson’s

Dr. Freed has devoted his entire career as a neuroscientist searching for a major breakthrough in the field of Parkinson’s Disease. Perhaps, this could be the breakthrough that he and the Parkinson’s community have been looking for. We can only hope.

Note: Phenylbuturate has been used to treat children with a rare liver condition for many years. 

References

Presentation by Curt Freed, MD to Bionic Brigade (Denver DBS support group) on August 12, 2011 in Denver, Colorado

CU researchers find promising drug for Parkinson's disease - The Denver Post  http://www.denverpost.com/recommended/ci_18407428#ixzz1V25TuYaz

CU Researchers Find Promising Parkinson’s Drug, Colorado Public Radio http://www.cpr.org/#load_article|CU_Researchers_Find_Promising_Parkinsons_Drug

A Major Breakthrough in Parkinson’s Research http://parkinsonresearchfoundation.org/resources/information.aspx?post=b34c3000-f6af-4ed0-831f-e0c0962d91bf

 

Cruising with Parkinson's

Press Release

Contact: Amanda Smith Phone: (941)870-4438

FOR IMMEDIATE RELEASE July 27, 2011

Past Cruiser Endorses

Parkinson Research Foundation (PRF)

Patient Educational Cruise Program;

Encourages Patients to Attend

Upcoming PRF Cruise in January 2012

SARASOTA, FLORIDA - PRF is hosting its fourth educational cruise from January 8 – 15, 2012. Cruisers will set sail out of Port Canaveral, Florida on Royal Caribbean’s Freedom of the Seas to embark on a seven-night Western Caribbean adventure.

The Parkinson Research Foundation (PRF) developed an educational cruise program to help Parkinson patients, care partners and their loved ones learn about Parkinson’s and connect with fellow patients from across the world. Each PRF cruise boasts a unique faculty of movement disorder specialists, giving cruisers unrivaled access to prominent experts in the Parkinson field.

After three successful patient cruises, PRF has earned a precious asset – the endorsement of a Wellsphere-certified Top Health Blogger, Kate Kelsall. Ms. Kelsall is celebrated throughout the PD community for her unapologetic candor when writing about Parkinson’s. Updated regularly, her blog provides an endless source of information about PD and a personal perspective on the disease.

She recently posted an entry on her blog debunking cruise concerns often cited by Parkinson’s patients. A past PRF cruiser, Ms. Kelsall will join PRF once again for the upcoming cruise in January 2012.

Ms. Kelsall wrote: “Cruises have now become an appealing vacation option for my husband and me. After cruising on two of the Parkinson Research Foundation’s educational cruises, my husband and I found the seminars and classes to be informative and practical, particularly Mary Spremulli's Voice Aerobics program with useful tips that can be implemented in everyday life.”

The January 2012 cruise program will have a “1950’s” theme, complete with sock hop dance parties and costume karaoke events. The educational program on board will include presentations by prominent Parkinson’s disease physicians and clinicians, including Dr. Juan Sanchez-Ramos, Mary Spremulli, Dr. Kathleen Clarence-Smith, Bill Guthrie, Eman Nakshabendi, Dr. Thomas Chase, etc.  Patients, care partners and loved ones can participate in support group meetings, exercise classes and wellness seminars. 

To read Kate Kelsall’s entire post about conquering cruise phobias and crusing with PRF, visit http://katekelsall.typepad.com/my_weblog/2011/07/conquering-cruise-phobias.html

For more information about PRF and the PRF Educational Cruise Program, contact Lynne Henry by phone at (941) 870-4438 or via email: info@parkinsonresearchfoundation.org or log on to www.parkinsonresearchfoundation.org. 

About the Parkinson Research Foundation (PRF)

The Parkinson Research Foundation (PRF) is a nonprofit health organization providing Parkinson’s patients with access to research, education, information and advocacy. PRF distinguishes itself from other Parkinson organizations by focusing on education and awareness, not only for patients, but also for their families and caregivers. PRF explores a variety of issues affecting the care and treatment of Parkinson’s disease, with a goal of bringing new advances in treatment to the forefront, making this knowledge available through seminars and conferences. The money raised by PRF funds research, information programs, and advocacy/awareness efforts that will support the over one million people with Parkinson's disease in communities across America.

For more information, please visit PRF online at: www.parkinsonresearchfoundation.org

 

Confused about Stages?

I never could grasp the concept of stages in Parkinson’s Disease. With the symptoms of Parkinson’s varying so much from patient to patient, I couldn’t determine what stage of Parkinson’s I was at and even if I did know, how did this impact how long I would live and how well or poorly I would function until I die.

Finally, someone addresses this important topic in the following article. I highly recommend it.  

Staging is Not Important in Evaluating Parkinson's Disease

By Joseph H. Friedman, MD, author of Making the Connection Between Brain and Behavior: Coping with Parkinson's Disease

From: APDA Newsletter Spring 2011

To read article, click on the following:

http://apdaparkinson.org/data/NewsLetterUpload/2011_Spring_News.pdf (article is on page 1, 6, and 7 of newsletter)

Comments on article on staging:

I would like to add that it is especially not relevant for DBS patients because it heavily relies on gait and balance, and DBS might not be very helpful with this issues.
Olga Klepitskaya, MD, Department of Neurology
University of Colorado at Denver Health Sciences Center

 

 

 

 

Conquering Cruise Phobias

When I was a non-cruiser, I never thought I would like cruising. I was fearful of being confined, cooped up, and claustrophobic. I was worried about getting seasick. I longed for an active vacation of riding bicycles and hiking mountains. I didn’t want to get fat eating meals round-the clock. I dreaded being around all those old people.

However, cruises have now become an appealing vacation option for my husband and me. After cruising on two of the Parkinson Research Foundation’s educational cruises, my husband and I found the seminars and classes to be informative and practical, particularly Mary Spremulli's Voice Aerobics program with useful tips that can be implemented in everyday life.

We hope to go on the next educational cruise sponsored by the Parkinson Research Foundation from January 8-15, 2012 (see below).

 

For details, check out info at: http://www.parkinsonresearchfoundation.org/cruise.aspx

Educational cruises are often ideal vacations for those with Parkinson’s and their families. Participants can be as busy or as leisurely as they choose. There is an activity for every member of the family. While the patients are attending educational seminars, their family members can enjoy the same or other educational seminars or choose from the many activities on the cruise.

Other non-cruise tours require travelers to constantly change hotel rooms as they travel.  On a cruise, it is not necessary for cruisers to schlep their luggage from place to place and pack and unpack until they depart.

Scooters can be rented by those who have difficulty getting around on foot.

Some cruise phobias and solutions I’ve discovered to conquer them include:

Phobia: The cabin is tiny. It’s true that most of the average cabins are smaller than most of the average hotel rooms. The cabin on our last cruise had a large bed in a tiny room. And I felt claustrophobic, like I was in a MRI machine. And there were no port holes with views of the ocean which resulted in feeling confined. It was necessary to synchronize our actions—one of us couldn’t open the closet door while the other was going in and out of the bathroom.

Solution: Pay for a larger cabin with a view. Handicapped accessible cabins (which are usually larger) are available for those in need of such accommodations.

Phobia: Many people are fearful of seasickness and afraid of spending the entire time hanging over the toilet being seasick. Cruise ships are usually scheduled during times of calm waters and warm seas. Because of the large size of the cruise ships, they are usually stable.

Solution: There are many over-the counter and prescription remedies for dealing with seasickness.

Phobia: Too much food and gaining weight

Solution: Choose sit-down dining instead of cafeteria-style meals to prevent over-eating. If possible, walk the stairs instead of taking the elevators and walk on the top deck at sunrise to wear off some of the calories from the frequent and heavy meals.

Phobia: Pre-assigned dining times and dining mates

Solution: If you dread the thought of sitting with the same table full of strangers night after night, before booking your cruise, talk to your travel agent about flexible dining and seating arrangements.

And my GREATEST FEAR is being surrounded by old people with Parkinson’s. It forces me to look at the realities of aging with Parkinson’s. It’s true that many cruisers are seniors, and a Parkinson’s cruise will tend to attract an older population. But right beneath those aging exteriors, you will find inspiring persons with amazing life experiences. And at age 61, I have become an inspiring senior living with Parkinson’s AND with amazing life experiences to share.

So we’re choosing an educational cruse as a fun way to learn as well as enjoy the fresh ocean air, watch glorious sunsets, and relax in the cool sea breezes with miles and miles of ocean as far as we can see. As for being around old people with Parkinson’s, these former strangers may become friends who both inspire and amaze us.

Happy Cruising!

Fear makes strangers of people who would be friends.          Shirley MacLaine

Becoming Your Own Patient Advocate

I would describe myself as a persistent patient. Others might describe me as a pesky patient.

Living with Parkinson’s Disease and Deep Brain Stimulation, I’ve needed to become my own patient advocate. I’d like to share some of the lessons learned along the way.

Select a Neurologist

Select a neurologist that has the experience and expertise that meets your medical needs. It’s also important that you choose a provider that you feel comfortable with and one with good communication skills. With Parkinson’s, consider selecting a neurologist who is a Movement Disorder Specialist.

Some health care plans allow patients to have “get acquainted visits” with a prospective provider. After meeting with the prospective provider, if you are uncomfortable, trust your instincts. If you have concerns about the competency of the prospective provider, you may also check out the status of the provider with your state’s Department of Regulatory Agencies to make sure there are no disciplinary actions. It is a matter of public record.

Know Your Coverage

Read the Evidence of Coverage booklet to determine what benefits are covered and not covered by your plan as well as the amounts you will be required to pay when you use health services. Before receiving services, contact your plan to make sure that the services are covered.

Deal with Disputes

If a dispute develops, contact your provider’s office and try to work out the problem. Some health care coverage issues can be resolved with a simple phone call. If this doesn’t result in a satisfactory solution, call the health plan member services department to obtain clarification of the policies and procedures of your plan.

If you remain dissatisfied, call the patient representative and/or risk manager to set up an appointment to discuss the disagreement.

Denial

Analyze what led to the denial of coverage and the insurer’s procedure for appeals. Call the customer service department and find out why the claim was denied. Talk to someone who can provide a clear answer.

If the insurer tells you it is not their error, but something your doctor or hospital can correct, call them and determine if it can easily corrected.

It is important to have the denial in writing. Obtain a copy of the denial letter.

Obtain a copy of the Evidence of Coverage booklet.

After you gather the facts, develop a strategy.

Consider getting assistance from a nonprofit patient advocacy group.

Be Prepared

Set up a binder to file the Evidence of Coverage booklet, bills, physician information, referrals and copies of all correspondence and paperwork about your health insurance problems.

Prepare a spreadsheet summarizing and documenting your efforts to resolve the problem, e.g., name of contact, title and position of contact, date of contact, time of contact, method of contact (phone, email, in person, fax, by mail) to use for future reference, if necessary. Also include details of the discussion.

Appeal

You can appeal a decision rendered by your health plan. The appeal process is included in your Evidence of Coverage booklet. Most likely, you will be required to file your appeal within a specified time period. It is essential that you meet these deadlines.

There are two methods of appeal: internal and external. The internal appeal is to the insurer itself and is the first step in the appeal process. If you are dissatisfied with the results of your plan’s initial review of your appeal, your plan may have a second level of appeal.

If your appeal is again denied, your health plan will tell you how to file for an independent external review. An external appeal is filed to your state department of insurance or other governing body and are is filed when internal appeals have been exhausted.

If you are dissatisfied with the results of an independent external review, you may want to consider a consultation with an attorney to determine your legal rights and options.

Fortunately, I did not have to go through the entire appeal process to reach a resolution. It took a lot of energy and determination to become my own advocate, but I am now reaping the benefits from being a persistent patient.

“Don't be discouraged.  It's often the last key in the bunch that opens the lock.”  ~Author Unknown

Changing Your Brain

By Sharon Kha

Copyright 2011

A thin slice of new moon hung in the chill of the Arizona morning. Some of the people lined up at the trailhead had canes or walkers, and most of them had shaky hands and took short, lurching steps.  A wisp of the aroma of frying bacon was in the air.  Breakfast at the Rancho de los Caballeros dude ranch in Arizona wouldn't be for another hour, but the group at the trailhead was too excited to eat.  They all had Parkinson's Disease or were married to someone who did, and they all wanted to change their brains.

Pat Bemis wasn't looking forward to the week ahead.  Frankly, she was saturated with the demands Parkinson's made on her and her husband for the past 22 years.  She wanted a manicure, a pedicure and a good book.

Becky Farley was everywhere at once; shedding energy like sparks from a comet. "Plant your feet wider, PWR! UP  and you'll be steadier," she'd say. "Good, good, that's better." Her arms swung in wide arcs as she walked. "Activate!" she said. "Exaggerate your movements!"

Gardner Bemis, Pat's husband, shuffled to his place in line, hunched over and moving slowly. He used to be a neonatologist until his tremor got too bad. Now he lives in Steamboat Springs, Colo.  He had read about research done in Japan where newborns with brain damage had trained other parts of their brain to take over some of the lost functions.  He had seen remarkable recoveries in newborns with his own eyes.

"With Parkinsons, the brain pathways are still there," he said. "We haven't had a stroke or an injury to the pathway-we just need more of a particular chemical. It seemed to me that retraining the brain to compensate for PD should be relatively easy."

Recent basic neuroscience research in animal models of PD (rodents and non-human primates) suggests that exercise can halt or reverse motor symptoms and "change the brain."  The exercise was shown to increase levels of dopamine if started early enough.  But, even in those animals that had already lost 50-60% of their dopamine cells to Parkinson disease and that had obvious gait and balance problems  (as is more like the human condition at time of diagnosis), the exercise helped the remaining neurons work more efficiently.  So the brain learned how to do more with less dopamine and they walked and balanced better!   For example, there were more dopamine receptors, increased amounts of dopamine were released and it stayed around longer in the place where it was needed, and noisy/inefficient circuits were partially restored (Vuckovic MG, Quanzheng L, Fisher B, Nacca A, Leahy RM, Walsh JP et al. Mov Disord 2010;25(16):2777).  Studies suggest the exercise may bathe the damaged neurons and circuits in the brain with nutrients, like growth factors, which makes them sprout new connections and survive for longer.  It appears that brain change and reorganization occurs primarily in those “activated” circuits!  Giving support for the old adage:  Use it or lose it! 

For Martin Buckley, a Colorado Attorney, the "runner's high" when your brain is bathed in endorphins was a familiar sensation.  He likes to push himself but he thought he's never be able to push himself to runner's high again.  He was wrong. By the end of the week he was walking on a treadmill sideways and backwards and the runner's high was back.

Bemis, Buckley and 26 other people with Parkinson's put their brains through a veritable boot camp of forced use exercise that generated plenty of endorphins during their week at the dude ranch.  They started with a Parkinson's Wellness Recovery (PWR!) walk every morning, attended daily PWR! MOVES™ and PWR! Circuit classes that target PD-specific symptoms and movement deficits, went to lectures, and learned to do Yoga, Tai Chi, and meditation to decrease stress and its negative effects.  About half way through the week, both Gardner and his wife noticed that his posture had improved significantly, and he wasn't shuffling any more.  "I had been telling him for years to stand up straight," Pat said. "But Becky taught him what he had to do so he could stand straight." “PWR! UP”

Gardner noticed that his colleagues were experiencing similar changes. Two 80-year-olds who arrived with walkers were walking without them when they left. One woman discarded her cane. Another man walked down the aisle backwards to get his certificate - just because he could.  Brain change was a fact.

NeuroFit NetWorks is a non-profit organization founded by Becky Farley, PhD, MS, PT., and this was their first weeklong PWR! Retreat. "My vision is to build a community that recognizes and implements exercise as a physiological tool to help protect, repair and optimize brain function," Becky said.

She has already implemented her vision in her hometown of Tucson, AZ, where she opened a PWR! GYM.  People with Parkinson's can come every day and do exercises that are specifically designed to address particular physical deficits that are common to Parkinson's disease and improve the quality of their lives. She believes that the forced use repetitive practice of whole body functional movements that are most difficult for people with PD – when performed with amplitude, vigor and mindfulness will restore lost function, balance, and mobility from muscles and circuits made weak from inactivity and nonuse, slow motor deterioration, and basically make people happier. She also believes that continuous access to exercise that begins at diagnosis may even slow disease progression.  

"This isn't like brain surgery or meds," Pat Bemis said. "I could see the changes incrementally day by day-not only physically but emotionally. It was a "can do" approach after all these years of being told it is a progressive disease.  I felt like I had been to Lourdes in Arizona-and I'm very skeptical about things like this. I'm a nurse."

Gardner Bemis agrees.  "Too many doctors think that we have a degenerative disease so they pat us on the back and send us on our way and say 'Come back in three months.'  Becky has found a way to look at specific symptoms and design a plan that trains the brain to compensate for those particular conditions."

As important as the change in fitness was the change in attitude.  One evening, Martin and Debbie Buckley joined the rest of the group on a hayride to the desert.  They ate barbeque and watched the space station come overhead in the incredibly dark desert skies.  "It was very emotional," Martin said.  "There was a change of mind set as the week went on and you found you were able to do things you didn't think you could do.  We bonded, and we left happier."

People in Colorado this summer will have two chances to try Dr. Farley’s ideas for themselves. Clinicians and health and fitness professionals can attend a workshop either July 21-22 or July 23-24 at the Swedish Medical Center in Denver to learn Becky's techniques and become PWR! Exercise Experts.  People with Parkinson's are invited to join the PARKINSON EXERCISE REVOLUTION by attending a lecture at the Colorado Community Church on July 20. Details for both events are available on the NeuroFit NetWorks (www.nfnw.org) or by calling NeuroFit NetWorks at 1-520-270-9990.
    
Oh yes…. Pat Bemis got her pedicure.

 

 

 

No Limitations for Neil

Like to see how Australian, Neil Sligar relaxes? Toward the end of four days each and every week, he puts on a T-shirt, shorts and pair of jogging shoes and heads for the gym. Believe it or not, indoor rowing and cycling at unusually high speed for a fellow of 65 years are easy compared to getting dressed or holding a cup of coffee. An oddity of his Parkinson’s is that as his exertion increases, the Parkinson’s abandons him.

Neil works out in the company of fit young people. No one says “Neil, you have Parkinson’s. You’d better take it easy." No one would dare.

Check out the video of Neil's usual exercise regimen at:

http://www.youtube.com/watch?v=R_-nRQmO8ko

Way to go, Neil.

 

Preventing Misdiagnosis

I was alarmed when reading the study The evolution of diagnosis in early Parkinson disease. Parkinson Study Group published in Arch Neurol. 2000 Mar;57(3):369-72,  which stated that:

“Previous studies concluded that initial diagnoses of PD made by general neurologists were incorrect in 24% to 35% of the cases when patients were examined at autopsy. Experts in movement disorders are expected to have greater accuracy of initial diagnosis of PD.”

I was one of the “lucky” ones. I went to a general neurologist when I observed a tremor in my left hand 15 years ago. I was diagnosed with Parkinson’s Disease at the age of 46. In my case, the neurologist ruled out benign essential tremor (a misnomer, as there is nothing benign about it), brain tumor, Wilson’s Disease and Lou Gehrig’s disease. I was ”lucky” that I was diagnosed and received treatment so quickly, unlike others who go for years and years, from doctor to doctor, without an accurate diagnosis and receive either no or inappropriate treatment. I was able to avoid those condescending comments from doctors such as “it’s all in your head” that hard-to-diagnose patients often receive. These patients later discover that it was indeed all in their heads, but not in the way that they originally thought.

When patients are struggling to get a diagnosis, I often suggest that they get an opinion from a movement disorder specialist. A movement disorders specialist is a neurologist who has taken additional training in the subspecialty in neurology called movement disorders. Movement disorders specialists are often involved in research and/or teaching in addition to their clinical concerns and are more typically found at major medical institutions. Such professionals typically follow a greater number of patients with these disorders and are generally more experienced in the use of the various medications (and their combinations) as compared to a general neurologist, an internist or general practitioner.

The topic of misdiagnosis is being discussed this week at the 15^th International Congress on Parkinson's Disease and Movement Disorders in Toronto, Canada. Betsy Vierck reports on this topic from the Congress at: http://www.recentlydiagnosedwithpd.org/home/2011/6/7/report-from-toronto-kudos-to-these-docs.html

Related Article:

Steps to Finding a Movement Disorder Specialist by Beka Serdans, RN, MSN http://www.care4dystonia.org/newsletter/StepstoFindingaMovementDisorderSpecialist.pdf

 

 

 

Challenge Yourself to Live Well, Even with Parkinson's

Living Well Challenge: A Victory Summit Panel Discussion Webinar on How to Live Well with Parkinson’s
June 15, 2011 – 1:00pm EST
Sponsored by the Davis Phinney Foundation

 • Featuring presentations and discussions with leading researchers and movement disorder specialists from around the country.

 • Covering topics like the latest in research and clinical trials, nutrition, exercise, how to communicate with your doctor and your family.

• And finally, giving you access to worksheets and tools to support you in your commitment to live well today.

Challenge yourself to live well today. Watch with a friend or loved one. Tell your support group and tune in together. Get the tools and information you need to live well today with Parkinson’s disease.

Register today by visiting www.davisphinneyfoundation.org and clicking on The Victory Summit page. Or call 1-877-274-7673.

More than 4,500 people living with Parkinson’s have been inspired and challenged to take action at The Victory Summit™ symposium in cities across the United States.

Now, it’s your turn.

Topics will include:

• The latest Parkinson’s Research and clinical trials
• Exercise
• Deep Brain Stimulation surgery
• Nutrition
• Your Parkinson’s Community: choosing your doctor and involving your family

Watch with your family, friends or your support group and use our downloadable discussion guide to start talking about how to live well today.

Take the Living Well Challenge today, and get the tools you need to improve your quality of life with Parkinson’s.

The Living Well Challenge webinar will be presented via live, interactive webcast that you can watch on your home computer. There is no charge for this event, but registration is required. REGISTER FOR THE LIVING WELL CHALLENGE

Schedule:

1:00 PM – 2:30 PM EST **NOTE ALL TIMES ARE EST

1:00 Welcome and Opening Remarks

What is the Living Well Challenge?

Introduction to the Panel:

- Monique Giroux, MDS, Medical Director, Northwest Parkinson’s Foundation

- Terry Ellis, PT, PhD, Boston University

- Davis Phinney, Founder, Davis Phinney Foundation

 1:15 CHALLENGE: Be Informed and Aware

The latest Parkinson’s research and treatment options

- The Panelists

- David Charles, MD, Vanderbilt University

- Holly Shill, MD, Banner Sun Health Research Institute

1:30 CHALLENGE: Be Active

The importance of exercise and it’s effect on Parkinson’s progression

- The Panelists

- Melanie Brandabur, MDS, Clinical Director, The Parkinson’s Institute

1:45 CHALLENGE: Be Healthy

The role of nutrition and Parkinson’s

- The Panelists

- Cathy Garvey, RD, Scripps Clinic for Integrative Medicine

 2:00 CHALLENGE: Be Present

Engaging with your family, friends and your Parkinson’s community

- The Panelists

- Melanie Brandabur, MDS, Clinical Director, The Parkinson’s Institute

 2:15 CHALLENGE: Be Connected

Staying involved and taking the Living Well Challenge

 2:30 Webinar ends – Take the CHALLENGE!

1. Download and print all CHALLENGE worksheets on living well

2. If you are in a group walk through your discussion guide to talk about what you just heard

3. Visit the Davis Phinney Foundation website for more information from the presenters and check back in 5 days to see if your questions have been answered by our panelists.