Shake, Rattle and Roll

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.

 

I Haven't Got Time for the Pain

I had battery replacment surgery yesterday morning at University of Colorado Hospital. Most of you know that I had deep brain stimulation (DBS) for Parkinson's Disease in Sacramento in May 2005. Every three to five  years or so, when the DBS battery gets low, it must be replaced through surgery. It's my 3rd battery, and this time it's the Activa PC battery, which includes a new and improved DBS patient programmer.

For some reason, this time the recovery seems slow (it's only been a day!) and painful. It feels like I have a have been stabbed in the chest followed by a gunshot wound to finish me off. I am so macho that when the doctor asked me upon discharge "You don't want a prescription for any pain medication, do you?" my response was an adamant "NO!" I'm an idiot!!!!!!

I no longer experience device-envy with this new battery.  Right now, it feels like device-impatience.

I've been fortunate to be one of those people who seldom experiences physical pain. At the doctors' appointments when asked about pain level from zero to ten, I usually respond with "zero" or "one."  I'm impatient with pain, deny it and minimize it.

Singer, Carly Simon says it best with "I haven't got time for the pain."

Addendum:

Two days after surgery I feel much better than I did yesterday, one day post-op. I have Advil PM to thank for a good night's sleep, the purchase of a new bra for my sore body and sheep skin seat belt covers for the car to protect my wounded and bruised chest.

Related Article: Device Envy at: http://katekelsall.typepad.com/my_weblog/2009/09/device-envy.html

 

A Strange Thing Happened on the Way to Starbucks

I rush into Safeway on this cold, wet, spring Saturday morning, in search of Starbucks. En route to the coffee shop, I hesitate at a bin of watermelons, and reminisce about savoring its taste on hot summer days of childhood. I hear a voice with a hint of a southern drawl say to me, “My Daddy said not to waste the watermelon as it costs seven cents.” I look up to discover an elderly man with twinkly blue eyes and a cross around his neck. His robust physical appearance reminds me of the late Pope John Paul II in his pre-Parkinson’s healthier days. His voice sounds like my father’s with a touch of an Oklahoma accent.

When I ask him his name, he says it is “Reverend Roy” and that he is a “Man of God.” As frequently happens when I encounter strangers, they tell me their ENTIRE life story. I must have “Counselor” written on my forehead.

Standing next to the bin of watermelons, this is what I learn about Roy’s story:

He is 81 years old and was married for 60 years.

His wife recently died of kidney failure. She didn’t want to live with kidney dialysis and begged Roy to talk to God about letting her go. After his conversation with God, she died shortly thereafter. With teary eyes, Roy tells me that his wife’s death is the most difficult thing he has had to deal with in his entire life.

His sister also died. He and his wife were parents of four children: two of their kids died in Afghanistan and their two remaining children are still living and in their 60s.

He was in the Korean War.

Years ago, he was in a construction accident in the workplace and his body was crushed by a piece of machinery. He begged God to save his life and that’s when he “got religion” and decided to be a Preacher Man.

His political views are to the right of Rush.

Toward the end of this one-sided exchange, Roy asks me if he can bless me by putting his hand on my right shoulder. I nod in agreement. He shudders when he places his hand on my shoulder and says that the Lord is blessing me.

After the blessing, I tell him that I have Parkinson’s Disease and that I also have deep brain stimulation and tell him a little about it. I say that my DBS battery is nearly dead, and that I am scheduled to have battery replacement surgery next Friday, May 20. Roy’s response is “Tell the surgeon you don’t need the battery replaced. You are cured and fully charged. And remember to thank the Lord for this miracle.”

After shaking hands when parting, in a daze, I walk over and order a grande white chocolate mocha, decaf, nonfat, no whip coffee. Even when I’m alert, I never can seem to get the order of the words describing the fancy coffees quite right.

I sit down at the table and ponder what has just transpired. Is Roy a depressed and lonely old man, a nut case, a religious fanatic or all of the above?

Although I am a big-time skeptic, I so much want to believe that Roy is also a miracle worker. Just to make sure that I'm not overlooking a miracle, I will have my current battery rechecked before proceeding with the battery replacement surgery next week.

It never hurts to keep searching for that miracle.

Reminiscing about Mom

 
Photo of Marge Doyle (Mom)

“Yesterday is history.  Tomorrow is a mystery.  And today?  Today is a gift.  That's why we call it the present.”  ~Babatunde Olatunji

On Mother’s Day today, I find myself reminiscing about Mom.

On May 8, 1996, 15 years ago today, Mom was in Rome, Italy on a well-deserved vacation with her two sisters.  She had taken care of her ill husband, my Dad, for nearly 10 years. He had died about six months earlier in November of 1995. Mom was looking forward to this vacation starting with a tour of the Vatican. While climbing with her little legs out of the tall old-fashioned bathtub in the hotel in Rome the night before her tour, she fell hard on the tile floor and broke her back. She was in the Rome American Hospital in Italy for a week and flew home to Kansas City with an escort. Mom was robbed of that much needed vacation. Her back still hurt when she died in October of 2008. Three years before she died, she was also diagnosed with Lewy Body Dementia.

On that same day 15 years ago in Colorado, I was diagnosed with Parkinson’s Disease.  I remember that day like it was today with the same nearly record-breaking temperatures of 85 degrees, then and now. My husband, Tom picked me up from work, and we drove to the neurology appointment. I was anxious, secretly fearing the verdict of Parkinson’s. Tom returned to work after the appointment, and I decided to walk the two miles home alone with my thoughts and worries.  The ground squirrels chirped as I walked past the undeveloped land. I arrived home with a trial of the Sinemet, the “gold standard” in hand. As instructed by the neurologist, I took this pill and was told to observe any changes in my Parkinson’s symptoms. Within a half-hour, the tremor in my left hand had stopped. I picked up my accordion and miraculously played a tune as both hands worked perfectly, just like my pre-Parkinson’s days.

Our lives were forever changed on May 8, 1996. It forced us to celebrate the present and cherish our victories. It taught us about the fragility of life. We learned to stop taking each other and our health for granted.

The challenge is to carry these lessons learned throughout the year, not just on Mother’s Day by remembering and behaving as though today is a gift.

To read about the neurology appointment when I was diagnosed with Parkinson’s, check outThe Answer at http://katekelsall.typepad.com/my_weblog/2006/11/ten_years_ago.html

To read about Mom and Lewy Body Dementia, check out http://katekelsall.typepad.com/my_weblog/lewy_body_dementia/

 

 

 

Not Speaking Out

 
Pope John Paul II is on the fast track to sainthood. In attendance at his beatification ceremony in Rome today, was the single miracle that he needed to be beatified: Sister Marie Simon Pierre Norman, a French nun, who was diagnosed with Parkinson’s disease in 2001. A Vatican investigation determined that fellow French nuns encouraged Sister Marie to pray to the then deceased John Paul. Following prayer, the Sister was miraculously “cured” of Parkinson’s.

In order to become a saint, Pope John Paul will require a second miracle. Five million people world-wide with Parkinson’s would love to be his second miracle.

I don’t have any problems with Pope John Paul becoming beautified and eventually becoming a saint. He led a saintly life and is well-deserving of the title.

However, my issue with the late pope is that prior to his death in April of 2005, he rarely or never spoke out about his personal struggles with living with Parkinson’s Disease. I kept waiting and waiting for a word of inspiration from the late pontiff, but it never happened. Think of how much he could have helped the Parkinson’s community had he shared his story.

Instead, Pope John Paul chose to be a silent sufferer and was commended by Pope Benedict XVI for doing so. In his homily at today’s beatification ceremony, Pope Benedict spoke of John Paul’s witness in suffering.  He said the Lord gradually stripped John Paul of everything, yet he remained ever a "rock," as Christ desired.  His profound humility, Pope Benedict added, grounded in close union with Christ, enabled him to continue to lead the Church and to give to the world a message that became all the more eloquent as his physical strength declined.

In the past, I’ve been guilty of this sin of omission by not speaking out and sharing my story—not wanting to whine when my health was going poorly and not wanting to brag when my life was going well.

We must start by speaking out about Parkinson’s and sharing our stories so that others might benefit. And don’t forget to pray to Pope John Paul for a permanent cure, not a one or two-time miracle, for this devastating disease.