Friday, September 19, 2014

COMING SOON: Shaky Paws Grampa Website


In spite of popular demand, a new website for which you have all been waiting (or not) is under construction as we speak for Shaky Paws Grampa (aka me).  You might well ask, what in the world makes you think there would be interest in such a thing?  A legitimate question, the response to which was written by my crack PR department (once again, me):

Patient-Perspective Parkinson’s Resources

Kirk began speaking at PD support group meetings and events in 2011 after writing his first children’s book, often following presentations by PD doctors.  He noticed that the patients’ and their care partners’ interest level actually increased in many cases, not because what the doctors shared was uninteresting or unimportant, but because information was being shared by “one of their own” who could directly identify with much of what they were experiencing.  This was a new “voice” that they were not used to hearing.  In the years that followed, the value of patient input, perspective, focus and participation has become a central theme in the development of enhanced treatments and research.
Parkinson’s resources are anything that has the potential to improve quality of life for people with PD (PWPs) and their care partners. Resources on this website will include:   

Kirk’s books
·       Kirk’s blog
·       Kirk’s advocacy
Ø  PDF/PAIR
Ø  DBS
Ø  Media interviews
·        Kirk’s recommended resources
Ø  Top 10 recommendations for PWPs and Care Partners
Ø  PD education websites
Ø  PD information websites (Denver area PD events/research updates)
Ø  Alzheimer’s & Lewy body dementia information websites
Ø  Recommended reading list
Ø  Recommended PD blogs
Ø  Recommended dementia blogs

About the SPG logo

The rainbow became a central theme for Kirk during the latter stages of writing his Window of Opportunity book based on his desire to communicate that his quality of life remains very good despite the significant potential that he will develop dementia.  He wants to be clear that he has much for which to be grateful, not least of which is the positive energy and caring he experiences whenever he interacts with the PD community.  The central themes that have lead Kirk to this point and that continue to be important for him are hope, faith, and love.


Here is a preview of the blog page:

Blog

World Parkinson Congress 2013 in Montreal

Kirk’s blog can be found at shakypawsgrampa.blogspot.com.

Kirk started writing articles for his blog around the time his first book was published (September 2011).  Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog.  Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world.  The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment.  Over time, various themes emerged:
·         Book or writing-related
·         PD-related information
·         Clinical research study advocacy/participation
·         Cognition issues
·         Living with PD-personal
·         PD meeting/conference announcements
·         SPG speaking engagements, media interviews, and webinars
·         Calls to action
·         Personal

Here is a chronological listing of articles broken down by category (click on title to view blog article).  Bolded titles are those Kirk recommends in particular for PWPs and care partners:

Book or writing-related


PD-related information
·         Exercise and PD
·         Deep Brain Stimulation
·         Parkinson's and Stress
·         A Tribute to Care Partners
·         How Doctors Choose To Die

Clinical research study advocacy/participation
·         Brain Donation
·         DENVER CLINICAL RESEARCH FORUM

Cognition issues
·         Parkinson's and Dementia
·         An Underaddressed Problem
·         Notes from the Twilight Zone

Living with PD-personal
·         Grampa Music
·         Living In The Moment
·         The Rest of the Story
·         New Beginnings
·         Angel's Wings
·         Making Memories
·         Go For It
·         Angel's Wings II
·         Go For It 2

PD meeting/conference information

SPG speaking engagements, media interviews, and webinars
·         KOA Radio Interview
·         Shaky Paws On YouTube

Calls to action
·         2012 PAR Vitality Walk
·         2013 Parkinson Vitality Walk
·         Are You A Parkinson's Warrior?

Personal
·         In My Opinion
·         A Tribute to Howard
·         The Voice of One

Friday, August 29, 2014

Parkinson's Article In The Denver Post

Battling Parkinson’s Disease

Colorado patients fight for the best possible life

By Electa Draper
Picture
Kirk Hall reflects on his battle with Parkinson’s disease at his home in Highlands Ranch on Tuesday. He wrote a book called “Window of Opportunity: Living with the Reality of Parkinson’s and the Threat of Dementia.” Cyrus McCrimmon, The Denver Post



A diagnosis of Parkinson’s disease is devastating and brings with it a steep learning curve. If climbed, patients say, life can be good.

Amid speculation that a recent diagnosis of Parkinson’s, or depression associated with it, might have been a cause for Robin Williams’ suicide, local patients with the disease expressed dismay that it may have felt like a death sentence for the iconic actor-comedian.

“It would be awfully sad, but we don’t know,” said Kirk Hall, who learned he had Parkinson’s in 2008 at age 59. “When I was first diagnosed, I was really down about it, but you have very little information at that point.”

Parkinson’s, a slowly progressive neurological disorder that disrupts movement, muscle control and balance, is known by many for its classic symptoms: tremors, slow motions, unsteady or shuffling gaits, erratic movements, slurred or soft speech, difficulty swallowing, and rigid limbs, neck and trunk.

About 1 million Americans and an estimated 17,000 Coloradans have Parkinson’s. It’s not fatal but can reduce lifespan. The Centers for Disease Control and Prevention rate complications from the disease as the 14th leading cause of death in the United States. After Alzheimer’s disease, Parkinson’s is the most common neurodegenerative disorder, with an estimated lifetime risk of about 1 in 100 persons.

More men get it than women, and the average age of onset is 55. About a third of cases appear to have a genetic basis. Caucasians are at higher risk, while both smoking and coffee drinking have been associated with lower risk for the disease.

“Parkinson’s is such a weird disease,” said Kari Buchanan, spokeswoman for the Parkinson Association of the Rockies. “Not everybody has the same symptoms.”
About a quarter never get tremors, she said.
“The disease and treatment are different for everybody. There is no carbon copy here. It can take years to diagnose,” Buchanan said.

The cause of Parkinson’s isn’t known, but it kills brain cells that release an essential neurotransmitter, dopamine. A hallmark trait is the presence in the brain of a protein called alpha-synuclein, a major constituent of pathological clumps called Lewy bodies. Despite research focused on these proteins, answers, fixes and funding are in short supply.
Rebecca Rothwell, diagnosed with Parkinson’s at age 56, said she first felt isolated and discouraged.

“I had friends practically giving me a wake,” she said.

But in April, at 63, she underwent a surgical procedure for deep brain stimulation at Littleton Adventist Hospital. Electrodes were implanted in a targeted area of her brain and later connected to a small, battery-powered electrical-pulse generator implanted near her collarbone.

“In March, I thought I was going to be in a wheelchair. I was ricocheting around the kitchen, shaking like a leaf,” she said. “They turned on the electricity April 29. In early June, I walked from Frisco to Copper Mountain. I’m mowing, gardening, everything. I’ve got my rhythm back.”
Deep brain stimulation, or DBS, isn’t the answer for everyone. While 30 percent to 40 percent of Parkinson’s patients might realize benefits, only about 10 percent undergo the procedure approved by the Food and Drug Administration in 2002, said neurosurgeon Dr. Aviva Abosch at the University of Colorado Hospital.

The current gold-standard treatment of Parkinson’s is the drug levodopa, which increases brain levels of dopamine, combined with carbidopa, which slows the breakdown of levodopa. Brand names include Sinemet and Atamet. The drugs are effective in about three-quarters of cases, according to the American Academy of Neurology.

The drugs’ side effects can include dyskinesia, the loss of muscle control that can exhibit as flailing arms and legs and other rapid, repetitive motions. DBS can improve motor function and squelch dyskinesia.

Hall underwent DBS surgery in 2011, and the implanted device has calmed his tremors. He and his wife and “care partner,” Linda, carefully manage his medications, nutrition, exercise and rest.

For Hall, the worst effects of Parkinson’s are not the tremors or other motor-control problems that medication and surgical therapies can reduce or eliminate for an indefinite period of time — but rather the cognitive impairment.

Lesser-known but debilitating effects include sleep disturbances, fatigue, loss of sense of smell, impaired sexual function, bladder problems, constipation, excessive saliva, depression, fear, anxiety, loss of memory, slowed thinking, confusion and, in roughly a third of cases, dementia.

“One of the most disappointing things for a person with Parkinson’s disease is people try to minimize these symptoms,” Hall said. “They are not normal aging.”

As a former American Express executive and business owner, Hall said he is most bothered by his loss of memory and problem-solving skills.

“All our routines are organized around Parkinson’s,” Linda Hall said. “We use humor a lot.”
With careful choreography, the couple can travel, host grandchildren and partake in simple pleasures.

“I can enjoy life. I’m at peace,” said Kirk Hall, who wrote a book called “Window of Opportunity: Living with the Reality of Parkinson’s and the Threat of Dementia.” (Order in book fomat at http://www.pygmybooks.com/BuyBooks.html (page 2) or http://www.amazon.com/Window-Opportunity-Reality-Parkinsons-Dementia/dp/0984206345/ref=tmm_pap_title_0Order in ebook format at http://www.amazon.com/WINDOW-OPPORTUNITY-reality-Parkinsons-dementia-ebook/dp/B00JG577PG/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=&qid=).  

The Halls have trained at the National Institutes of Health in research and patient advocacy. His work to help other Parkinson’s patients has given him his greatest sense of purpose, he said.
He says patients should seek out a neurologist who specializes in movement disorders. He also recommends a DBS support group called The Bionic Brigade of Colorado.

“We’re entering an age in which it wouldn’t surprise me if we saw a cure in 10 to 15 years for neurodegenerative diseases, but no one has cured them yet,” said Dr. Benzi Kluger, neurologist and director of the Movement Disorders Center at the University of Colorado.
Kluger met Hall in 2008, four months into his new neurology job at CU. Hall and others inspired Kluger to start one of the country’s first team-based palliative-care clinics to relieve the suffering of Parkinson’s patients.

The team includes physicians, nurses, psychologists, social workers and a chaplain.
“We try to lift a little of the burden,” Kluger said.

Electa Draper: 303-954-1276, edraper@denverpost.com or twitter.com/electadraper