I wondered this as I read the JAMA Network piece on best practices in PD care: “Who is this fluent writer plumping interdisciplinary PD care?” NEW recruit to the cause, I murmured to myself.
Got to the author’s name at the end. No other than Shuffling Editor Hall of Famer, UF’s Michael Okun.
Shuffling Editor Note: This post is the work of Valerie Herrero, steadfast widow of Gerard Herrero. Gerard died May 26 from complications of his PD, diagnosed in 2005. Gerard never, ever gave in to his PD, which he and Valerie fully “owned.” The Herrero’s were headline members of the North Tampa PD Support Group. Valerie continues to serve as the email megaphone for the group and many other PD service organizations and individuals in the Tampa Bay area. Valerie is unstoppable when she seizes an issue and makes it hers. Here she recounts PD the journey she and Gerard had and offers lessons learned.
By Valerie Herrero
On Friday, May 26, 2017, my husband, Gerard Herrero, left the world, as we know it. Gerard is free from the Parkinson’s, cardiovascular disease and related autoimmune issues he and I wrestled with for 13 years.
PD started, as a nuisance twitching of one finger but gradually became challenging, trying and very ugly. There were shaking, freezing, balance issues; difficulty getting up from chairs; difficultly dressing, especially with buttons and zippers, socks and tennis shoes.
It became challenging to eat at home or in a restaurant. Holding tight onto objects such as cups and glasses, sandwiches, forks, etc. became an adventure.
As a care partner, you learn to modify and adapt. For example, this last year we moved his tax preparation, accounting services and financial advisory business to a home office after his PD worsened.
Weekly exercise became the top of our agenda with YMCA PD Spinning, Rock Steady Boxing, Tai Chi, PT, OT and walking. We mastered walking sticks and walkers to push forward. We were always looking for something new to try.
PD drugs started to buck Gerard. The last 2 years he had more off times than on times. Adjusting Carbidopa-levodopa dosages was unsuccessful. Some days he would take 12 – 14 pills in a 24-hour span.
Then in May 2014, his immune system went wacky. Gerard’s platelet count dove to dangerous levels. In December 2016, Gerard was diagnosed with Bullous pemphigoid Disease, an autoimmune skin disorder.
Words I leave for Parkies and their care community: Get PREPARED! PD is an ugly, malicious, humbling disease that causes other health issues and life trials. Whether you accept it or not, realize it or not, death is inevitable and one day it will knock.
Everyone needs to start assembling their team of doctors, creating a palliative action plan and finalizing an end of life care plan. Get all your documents in order: (medical, estate, will, wishes, organ donations, etc.). You never know when it’s going to be your last breath.
No matter what stage of PD you are in……Please….. Please make every day the best gift you have. Create memories because time is precious!
Please take the time to live, love and laugh as if today is your last. Don’t assume anything. Someone else higher up is in charge and has the master plan.
Shuffling Editor note: I am intrigued by growing evidence that PD is an autoimmune disorder. This review article makes the point clearly. It appeared in Parkinson’s News Today by Magdalena Kegel.
“Parkinson’s disease may in part be driven by autoimmune processes, according to researchers who discovered that certain immune cells react to alpha-synuclein — a protein that accumulates in the brains of Parkinson’s patients.
“The findings, published in the journal Nature, raise the possibility that immunotherapy could be used to slow down disease processes in people with Parkinson’s. An immune reaction to alpha-synuclein could potentially also be used to identify people at risk of developing the disease.
“‘The idea that a malfunctioning immune system contributes to Parkinson’s dates back almost 100 years,” David Sulzer, PhD, a professor of neurobiology at Columbia University Medical Center and one of the study’s lead authors, said in a press release.
“’But until now, no one has been able to connect the dots. Our findings show that two fragments of alpha-synuclein, a protein that accumulates in the brain cells of people with Parkinson’s, can activate the T-cells involved in autoimmune attacks,” he said.
“The study, “T cells from patients with Parkinson’s disease recognize α-synuclein peptides,” suggested that immune T-cells react to neurons in which large amounts of abnormal alpha-synuclein has piled up.
“Together with colleagues at the La Jolla Institute for Allergy and Immunology, the research team took blood samples from 67 patients with Parkinson’s disease and 36 healthy controls of the same age and mixed them with fragments of alpha-synuclein and other neuronal proteins.
“The idea was to observe how immune cells present in the blood would react to the protein parts. While immune cells from healthy people did not react much to the presence of the nerve cell components, T-cells in patients’ blood reacted strongly to alpha-synuclein. This indicated that they had been primed to recognize the protein.
“The response could explain why genetic studies of Parkinson’s disease have repeatedly flagged a genetic region, which is responsible for the immune system’s ability to tell the body’s own structures from foreign ones found on microbes and tumors.
“Sulzer’s lab had shown three years ago that dopamine neurons have proteins on their surfaces that act as flags that aid the immune system in recognizing foreign structures. They suggested in 2014 that T-cells had the potential to attack these neurons in an autoimmune process.
“The new study provided evidence of how this might happen. According to Sulzer, the T-cells might start reacting to neurons when they start accumulating abnormal alpha-synuclein, mistakenly thinking they are a foreign structure.
“In most cases of Parkinson’s, dopamine neurons become filled with structures called Lewy bodies, which are primarily composed of a misfolded form of alpha-synuclein,” Sulzer said.
“Young, healthy cells break down and recycle old or damaged proteins,” he said. “But that recycling process declines with age and with certain diseases, including Parkinson’s. If abnormal alpha-synuclein begins to accumulate, and the immune system hasn’t seen it before, the protein could be mistaken as a pathogen that needs to be attacked.”
“But so far, researchers do not know if the immune response is what triggers Parkinson’s in the first place, or if it drives disease progression once the disease has been triggered by other factors.
“”These findings, however, could provide a much-needed diagnostic test for Parkinson’s disease, and could help us to identify individuals at risk or in the early stages of the disease,” said study co-leader Alessandro Sette, a professor in the Center for Infectious Disease at La Jolla.'”
It’s time to target the information/care abyss awaiting most Parkies at diagnosis.
A group primarily of Tampa PD SELF graduates is teaming with a University of South Florida advertising class to find and recommend ways to fill that huge hole.
The project is an extraordinary opportunity to address the disconnect between PD diagnosis and orderly provision of validated information and appropriate care.
Coby O’Brian, a senior instructor in the USF School of Mass Communications, is dedicating an upcoming class to understanding the disconnect, then creating information campaigns to end it.
In short, the campaign’s intent is to identify and reach new Parkies, place solid PD information in diagnosing physicians’ offices and provide PD-savvy mentors for the new Parkies.
The 33 students are divided into three-person teams. Each team will examine in depth the role and responsibilities of PD care providers, such as speech therapists or internists. The teams’ findings will be rolled into a recommended marketing campaign.
Each team will be assigned an experienced PD mentor. The mentor will meet with the team at least once in person. After that, the communications can be virtual.
The mentors will assist students understand how Parkies interact with medical care providers and vice versa. They will also help the teams develop their action plans.
A word about Coby, a one-time ad operative. He is smart, aggressive, sometimes brash, often loud……and relentless. Coby’s father has PD. Coby “gets” PD. I “get” him.
Shuffling Editor is opening a second front (Central Georgia) for my PD patient advocacy work—under a new banner (Davis-Phinney Ambassador).
I came to Tampa 19 years ago to help arrange the marriage of The Tampa Tribune, WFLA-TV and TBO.com in the News Center
I leave to fight back better against my Parkinson’s disease.
However strong my defenses, this unpredictable neurological disease will inevitably progress. The question is how best to slow it and bend its trajectory in the desired direction.
My wife Struby and I have purchased a home in Carlyle Place, a lovely and lively seniors’ community in Macon, Georgia. It is owned by the local hospital and medical complex Navicent.
It’s near stately Wesleyan College and not far from dynamic Mercer University. Higher education is in my blood, first as a student then as a journalism professor after retiring from the Trib in 2006.
PD is not a death sentence, as followers of this blog know. It is possible to “live well” with it, as the Davis Phinney Foundation says. I am doing so now.
Parkies globally are embracing improved exercise habits, diet, mental tools and social networks to punch back at this cruel condition. An increasing number of studies document our improved health and well-being.
“When people describe Parkinson’s disease, they often define it as a disease that is incurable and without treatment to slow its progression,” says Dr. Peter Schmidt, chief research and clinical officer of the Parkinson’s Foundation. “You can change how Parkinson’s affects you, but it takes hard work and dedication.”
The key is taking charge of the disease, Schmidt says, by aggressively seeking the most expert care available and engaging your brain through rigorous exercise and mental conditioning.
Dementia, however, remains a strong possibility at the end of the PD road. If that’s my fate, Struby has helping family in Macon and my brother and his family is 80 miles up the road in Atlanta.
Struby and I leave Tampa with wonderful memories of raising our two sons in Tampa Palms, Rotary service and involvement with Hyde Park United Methodist Church.
We retain our condo in New Smyrna Beach, FL. I intend to continue as Executive Director of the Florida Society of News Editors.
My Ambassador work for Davis-Phinney will include continuing contact with Tampa Bay Parkie activists and new Living Well initiatives in Central Georgia.
My newest community is six Tampa Bay Parkies and their care partners in an unusual support group, the Parkinson’s Disease Action Group (PDAG). I describe it this way in the Mission Statement:
“No accountability organization or system exists for strongly aspirational and persevering Parkies. We have created one, the Parkinson’s Disease Action Group (PDAG). The group comprises six Parkies and their care partners.
“Our goal is to help one another out-wit, out-flank and counter-punch this unwelcome tenant in our brains. We will reach out to identify and mentor newly-diagnosed Parkies.
“We will share and learn from one another’s action steps, such as second-and-more opinions, off-label medications, busting through bureaucratic barriers, and workarounds for diminished skills and loss of control.
“We aim to meet monthly to hear, discuss, engage and bolster the health and personal plans of one of our couples. Our conversations are confidential. We will be candid, challenging, confronting, caring, and loving. (Anyone who utters the weasel words “to be completely honest with you” will undertake 50 pushups.}”
I owe Tim Hague Sr. an enormous thank you. The Canadian Parkinson’s advocate/educator/motivator helped me rethink my relationship with the various communities in my life.
Hague was a featured speaker at the Davis Phinney Foundation’s Victory Summit last week in Punta Gorda. He captivated the more than 800 Parkies and friends with perseverance stories about winning the first Great Amazing Race Canada with son Tim Jr.
Their reward was $250,000 cash, plus automobiles and free air travel. The perseverance required to win had everything to do with Tim’s PD-related memory and organizing challenges.
To hear Tim tell his story, go to http://www.timsr.ca/watch-tim-speak/
Tim often referred to the communities in his life: family, his hometown Winnipeg, fellow Parkies, his health care team.
He got me to thinking about the communities in my life: my immediate and extended family; PD SELFers; Rock Steady Boxing compatriots; PD support group members; fellow Florida newspaper editors; the golf group I once belonged to; college friends; high school friends; journalists I worked with at three Carolinas newspapers. The list goes on and on.
Each community commands my attention, requires nourishment and provides me support in large and small ways. I count on them to help fuel my perseverance in pushing back at my Parkinson’s condition.
Davis Phinney Foundation is also about communities and individuals in those communities who serve Parkies. The foundation’s primary mission is to salute people who persevere with their PD and serve their communities. Until Friday, I had not understood how Davis Phinney stands apart from other PD organizations in this way.
I salute the foundation and their speakers, such as Tim, for the large contribution they are making to the lives of those of us with Parkinson’s.