Davis Phinney Foundation, National Parkinson's Foundation, Parkinson's Disease, Support Groups

New Front, New Banner for Shuffling Editor

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.}”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Davis Phinney Foundation, Parkinson's Disease, Parkinson's exercise, Support Groups, Uncategorized

Essential PD Communities

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.

 

 

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Parkinson's Disease, Parkinson's exercise, PDF, Support Groups, Uncategorized

WORKAROUNDS: Counterpunching 14 PD Indignities

pd-walkaround

I treasure the work of the late Dr. Tom Graboys, esteemed Boston cardiologist.

I reread his memoir about PD (“Life in the Balance”), and was riveted by two words: diminishment and control.

Graboys’s major PD undertakings were managing his diminishing capacities and keeping control of his life.

Those are my issues, too.

I give you a sampling of my tactics to counter PD’s relentless drive to diminish, and wrest control, of my life.

  1. Loss of sensation in dominant right hand: go left-handed. (Neuroplasticity at work)
  1. Clumsiness when eating (dropsies): substitute spoons for forks.
  1. Can’t remember where I left keys and like valuables: tether items to a constant in life. In my case, a small leather pouch that’s always at my side. (Boy Bag)
  1. Leaving home without vital documents (wallet, driver’s license): always have them in shoulder bag (Man Purse), which contains Boy Bag in marsupial fashion.
  1. Driving uncertainty: get technology loaded car (GPS, blind spot displays, radar and cameras everywhere); stick to middle lane; U-turns rather than left turns into four-lane roads; care partner drives in unfamiliar areas.
  1. Emotional volatility (emotional incontinence, in a Parkie friend’s unforgettable rendering); think twice (maybe 10 times), before acting on impulse (binge shopping, gambling, etc.).
  1. Thanks to a nOH-like condition, peeing every 30 minutes, urgently: always know (and plan around) location of nearest toilet; wear quick-exit gym pants; stow your pride and employ adult diaper for trips.
  1. Difficulty moving from sitting to standing: use chair with arms rather than deep sofa; employ booster toilet seat.
  1. Life in the slow lane (bradykinesia): add 30 minutes (or more) to a planned task (packing for trip, gym date, doctor visit).
  1. Unstable balance: forget cane or walker; use balance sticks. Sexy and pleasantly eye-catching (“Cross Country skiing in Florida! How neat of you!”)
  1. Forgetting must-do tasks: place visual reminders in front of you. For example, monthly investment report as reminder to call investment advisor.
  1. Loss of multi-tasking ability: KISS principle always. (Keep it simple stupid) Rely on care partner for help.
  1. Leaving stuff in and around car: rigid discipline to ALWAYS check roof, door locks, rear hatch and ground around vehicle.
  1. What-to-wear-today dilemma (due to not remembering your calendar obligations): choose clothes night before. For this once well-dressed guy, this is a new challenge. I need garb that fits the day and is quickly and easily removed, thus assisting me in avoiding the ultimate public embarrassment: pissing in one’s shoes.
Must Read, Parkinson's Disease, Parkinson's exercise, Support Groups

Two Major Advances for Parkinson’s Care in Tampa Bay

 

I returned Sunday from Denver where I participated in the national rollout of the most exciting self-help program for PD that I have ever experienced.  Tampa Bay is one of eight metro areas chosen to pilot a national training program like no other. It provides Parkies the knowledge and tools to become masters of their treatment in order bend their PD trajectory in the right direction.

Tampa joins Richmond, Detroit, Houston, Phoenix, Denver, Boulder and Philadelphia in piloting this national program. One Parkie evaluator called it “life changing.” (I enthusiastically agree it will accomplish that for most enrollees.) The presenting organization is the Parkinson’s Disease Foundation.

 

The program is Self-Efficacy Training customized for PD. Between 26 and 36 newly diagnosed Parkies and their helpmates will meet once every month in two and one-half-hour sessions. They will start in September 2016 and finish in June 2017. Participants will acquire the disciplines and skills necessary to take charge of their condition, becoming captains of their treatment teams.

 

This contrasts with the all-too-common wandering in the PD jungle of confusion and ignorance dealt many new Parkies today. I will co-lead our program with Sherry Harlan, an experienced and dedicated USF health administrator.

 

For me, this program is a high point in my work to help Parkies escape the passivity and despondency that grips many newly diagnosed Parkies.

 

I also learned today that Hillsborough is getting its first Rock Steady Boxing program. It is owned and directed  by an experienced therapist I trust. It will open soon in the Westshore area near downtown Tampa. The only existing Tampa Bay program is in Pinellas County just east of Indian Rocks Beach, a very long haul from most of Hillsborough County. I will transfer my Rock Steady training, halving the 94-mile roundtrip. It will need recruits beyond me. Interested Parkies should email  me at gthelen1@icloud.com.

Parkinson's Disease, Parkinson's exercise, Support Groups

My Parkinson’s Crash Course

I wasn’t ready for a crash course in neurology that day two years ago. I was enjoying semi-retirement, assuming my medical writing days were far behind me. But then the doctor said, “You have Parkinson’s disease.”

Ever since, I have been immersed in Parkinson’s 101: what it means to live with a chronic neurological disease.

This month is Parkinson’s Awareness Month. Accordingly, I think even more about the 5,000 people in the U.S. who will also hear those words this month.

What do I wish I had known when I was diagnosed?

 It’s a snowflake disease. Just like a snowflake, each of us is unique and so is our Parkinson’s. Do not assume your disease will look like someone else’s.

Some symptoms are invisible. Because many of us associate Parkinson’s with movement symptoms, we may ignore signs of depression, fatigue, constipation, or sleep problems (especially acting out nightmares). In recent years, the medical field has recognized that such symptoms are part of the disease. If you experience them, tell your doctor so they can be diagnosed and treated for what they really represent.

A Parkinson’s specialist can help. Most of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist. Those neurologists, who have undergone two years of additional training, can help us to better manage the disease and stay current on research and clinical trials.

Staying active is essential. Parkinson’s may affect our movement, but staying active can help in the long run. Research shows that intensive, sustained exercise (such as boxing, hot yoga, interval cycling) can ease symptoms and combat fatigue. And that regular daily activity (going for walks, doing the laundry) can help improve life with Parkinson’s.

We can benefit from complementary care. In addition to medications, we can benefit from physical, speech and occupational therapy and the knowledge of nutritionists and psychotherapists. Putting together a care team of these professionals early on can pay off for years to come. But due to the fragmentation of PD care delivery, it takes effort on your part to assemble that team.

All support groups are not created equal. Support groups have different constituencies (young/elderly onset, newly diagnosed), different energy levels, different ambitions and agendas. Shop widely before you choose.

There is a lack of localized information. Patients want close-to-home answers. Where do I locate the physical therapy that doctors often suggest? How do I find a personal trainer who specializes in PD? Who can help me make my home safe from falls? Where do I enroll in recommended Tai Chi, spinning or boxing classes? In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations offer effective national advice but can only do so much at the granular, local level.

We can live well. Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give in to the disease or lose hope. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties. Find your passions. Mine are advocating for research, raising awareness and sharing validated information.

Also remember that you are not are not alone. There are 1 million of us nationwide. Groups such as the Parkinson’s Disease Foundation and the National Parkinson Foundation are available to support us. Contact them to find information and resources. Together, we can not only live well with Parkinson’s, one day we can end it.

Parkinson's Disease, Research, Support Groups, Uncategorized, USF

More on living well with PD

I spent time last week in virtual conversation with two very interesting people who have much to say about living well with Parkinson’s disease.

One is John Baumann, a motivational speaker now living in Sarasota. He has tamed his PD with a fierce exercise routine and steely determination.

The other is Diane Cook of Denver, a leading proponent of employing self-efficacy principles in better managing PD.

The two come from different backgrounds but converge at a common point.

Baumann, who will speak to the Sun City Center support group and guests Monday April 18, boils his message down to this:

“ Whatever hand life deals you (whether your fault or not), whatever life-changing adversity you have to endure, you still have some control over it, to not just live well, but live an AMAZING LIFE. It takes faith in yourself, discipline, determination, desire, intensity, inner strength. For me, it was having Parkinson’s disease in my 30’s; I am 54 today and have very few symptoms.”

The support group invites all Parkies and caregivers to attend this special event sponsored by the South Shore Coalition for Mental Health and Aging. The meeting is 1:30 – 3:00 p.m. at Sun Towers Retirement Community 101 Trinity Lakes Dr. Sun City Center. For additional information call Debbie Caneen at 813-892-2990

A National Parkinson Foundation grant springing from money raised at last year’s Moving Day Tampa Bay walk supports his talk.

This year’s walk is Saturday at the University of South Florida Marshall Center starting at 9:00 a.m.
The event is for all ages and abilities. You will see a variety of movement activities, such as yoga, Rock Steady Boxing, dance, Pilates, Tai Chi, stretching and much more before the walk. The purpose is to celebrate the importance of movement in our lives. For more information go to: http://www.MovingDayTampaBay.org


Diane Cook’s explanation of how self-efficacy works in PD is quite similar to Baumann’s philosophy:

“Our belief in our own capacity to produce positive outcomes from our actions determines what we are able to do with the knowledge and skills we have. Our self-efficacy beliefs are more about what we think we can do with our skills than they are about what skills we have.

“Self efficacy is about having the confidence to be able to integrate our skills into a course of action and perform under a specific set of circumstances and challenges, such as managing chronic, progressive disease. Our self-belief influences our thought processes, emotional state, motivation, and patterns of behavior. It influences the challenges we undertake, the effort we expand and our perseverance in the face of difficulties.”

Cook offers a short, intriguing self-evaluation for you to take to measure how well you are managing your condition. It’s found here:

http://projectspark.org/sites/default/files/Self-Efficacy_Brochure_projectsparkorg_1.pdf

In my reading this week, the web brought me some interesting observations from Australian Ben Basger. He is a lecturer and tutor in pharmacy practice, Faculty of Pharmacy, The University of Sydney. Here they are:

”The earliest pathological evidence of PD starts in the nervous system of the gut, medulla and olfactory bulb and spreads transneuronally to the midbrain (substantia nigra) and then the cortex. This may explain why non-motor symptoms of PD, such as constipation, hyposmia (reduced ability to smell) and rapid eye-movement sleep disorder often precede the typical motor symptoms, and why cognitive impairment is nearly always found in people with longstanding PD.

”These non-motor symptoms, together with fatigue and depression, may precede diagnosis by as much as 25 years.

“Advancing PD is further complicated by the loss of non-dopaminergic neurons, contributing to disturbances of gait, posture, autonomic nervous function, speech, cognitive function and sleep that may become unresponsive to dopamine. Dopamine replacement alone becomes inadequate.

”Although PD is a progressive disorder, deterioration is typically very slow, with considerable individual variability. The time to commence drug treatment for motor symptoms is when they are causing physical or psychological disability. It is a misconception that PD treatment is only effective for a limited time and should be deferred for as long as possible to reserve that benefit.

“All dopaminergic medications can cause nausea, gastrointestinal symptoms, hypotension, drowsiness, cognitive symptoms and impulse control disorders, but these are more common with dopamine agonists (e.g. pramipexole, ropinirole) than with levodopa/dopa decarboxylase inhibitors (LD/DDIs).

“For most patients with PD, motor fluctuations and dyskinesias (abnormal movements) are not disabling and can be adequately managed by manipulating the oral drug regimen.

”The incidence of dementia increases with duration of PD. It is characterized by fluctuating cognition and visual hallucinations. Cognitive impairment affects up to 75% of people who have had PD for at least 15 years, although the main risk factor is advancing age.”

Parkinson's Disease, Support Groups

SHIP OF THE BRAVE

The reportorial question I often ask when I am seeking to draw a person out is this: Why are you attending this event? Why are you here?

The question usually produces useful insights and understanding about motives and state of mind, not to mention a good quote or two.

I used it with caregivers for Parkinson’s patients who gathered for a weeklong cruise in the Caribbean this month. It was a monumentally naïve, even stupid, question in this context.

Their reason for carving out the time and money was, as one eloquently put it, “so we could be normal people on normal holiday enjoying one another and not objects of curiosity.” No cooking, cleaning or errands for a blessed week.

The cruise was the ninth sponsored by the Parkinson Research Foundation of Sarasota, which operates the renowned Parkinson Place. The 37couples came from states ranging from California to Texas to Ohio to Vermont to Florida. Most were Parkinson cruise veterans. They received two days of the highest possible level of educational seminars from acclaimed neurologists Juan Sanchez-Ramos and David Riley.

Great doctors aside, it’s the caregivers, most of them women, that I want to discuss. They are extraordinary people. They stand tall and brave in the face of their partner’s advancing disabilities.

They manage the aftermath of falls; manage spouses who wander and become lost; manage partners whose voices have become so soft it is difficult to understand what they are saying; manage spouses who had regressed cognitively to the level of a three-year-old; manage partners so immobile they require almost full-time attention.

Observing those brave caregivers was a heartbreaking privilege. They were cheerful, upbeat and admirably social. The tears came quietly when they described how good their lives once were and how much their partner was now suffering the ravages of a relentless, unpredictable and incurable malady.

I will never forget the couple from California. She is a retired healthcare professional who has directed her still robust energies towards making the care of people with Parkinson’s better.

Her husband has had Parkinson’s for 25 years, but you would never know it. He remains the bear of a man who once played football and still visits the gym for as many workouts as possible.

He said our cruise would be his last. His energies had declined so much he could no longer participate in the manner he preferred. His wife’s eyes glistened as he spread that final goodbye to his fellow cruisers.

At the opposite experience pole was the Florida couple with a very recent diagnosis of Lewy body disease, the fiercest kind of Parkinsonism. The man had already lost his ability to drive. He was experiencing hallucinations. His wife was struggling to understand what had happened to her husband and what resources she needed to find immediately to deal with the rapidly escalating symptoms.

The best I could do was point her to Parkinson Place for support and care and give her the remarkably informative booklet from the Parkinson’s Disease Foundation: Parkinson’s Disease Q&A, Seventh Edition, a must read for the newly diagnosed.

The Parkinson Research Foundation’s Parkinson Place Director Marilyn Tait, was relentless in pounding home this essential message: caregivers’ No.1 job is to take care of themselves. Unless they did, they would lack the stamina and clear headedness to care properly for their loved one.

In a posting by Marty Beilin from the Well Spouse Association, Maggie Strong offers a similar message. She describes three progressive stages that typify a caregiver’s life.
The Heroic Stage

“The diagnosis is in, and a productive panic energizes you and family members. You want to learn as much as you can about your spouse’s illness or disability. Doctors and other experts are consulted. You read everything you can on the subject…
Optimism often abounds during the heroic stage….

“But over time when there is little improvement or decline sets in, hope slowly fades and optimism turns to despair… The heroic stage comes to an end as you come to terms with the reality of your spouse’s condition and prognosis.

Ambivalence

“Long-term caregiving sets up debilitating internal conflicts. On the one hand, you want to support and care for your partner. It’s the right and moral thing to do. You are motivated by love, or a sense of duty, or societal expectations. At the same time you feel physically exhausted. Financial concerns mount. You may have to quit your job. Intimacy is difficult or impossible. You don’t see a future. You want to get out…

The New Normal

“In this third stage, balance, resolution, and inspiration empower caregivers to live much more fulfilling lives. You recognize and come to terms with the long-term nature of your situation. But you no longer put off or set aside your desire to pursue your own interests and dreams…

“To achieve balance, you communicate more openly with your spouse and take steps needed to resolve the often difficult and painful issues in the marital relationship…

“The new normal is achieved when we no longer go about our caregiving responsibilities with resentment but attend to the needs of our partner with love.”

For more information about Parkinson Place in Sarasota, FL or to learn more about Parkinson Research Foundation’s Educational Cruise 2017 please visit ParkinsonPlace.org or call 941-893-4188.

Addendum

1. The Well Spouse Association is a community of spousal caregivers for the chronically ill and/or disabled. It offers support groups, an online chat room and forum, and mentors. It sponsors bi-monthly weekend respite events. It also shares best practices on how to carve out time for caregivers daily or weekly. Contact information for the dues-paying organization is 1-800-838-0879, http://www.wellspouse.org and info@wellspouse.org.

2. 2017 PRF Educational Cruise
March 17-26 sailing from Port of Miami to Southern Caribbean on Royal Caribbean’s Navigator of the Seas. Stops in Haiti, Curacao, Aruba and Bonaire.

Parkinson's Disease, Support Groups

Fox FoundationThrows a Grand Tampa Bay Party

The Michael J. Fox Foundation threw a grand party Saturday for Tampa Bay Area people with Parkinson’s. They spared no expense for the estimated 700 to 1,000 Parkies and their care partners who gathered at the downtown Tampa Hilton hotel.

Breakfast was everything you could ask for, and the box lunches were top drawer. They even provided parking vouchers worth up to $10 each.

The main and breakout sessions were informative an interesting, even if little information ground was broken. The gathering allowed attendees to interact with care providers in the area, ranging from USF research initiatives, new cycling programs at the South Tampa Y and the relatively recent and successful Rock Steady Boxing program in Largo. In the largest sense, the community of Parkies and their support organizations was established or at least reinforced.

The plenary and breakout sessions covered the familiar topics of how varied Parkinson disease symptoms are, how you find and interact with a movement disorders specialist, what research is in the works and the role and stresses for caregivers.

The all-day event had both funny and strange moments. Dr. Robert Hauser surveyed the vast audience with a wry smile and said what a wonderful gathering this was of future participants in his many research studies at the USF Byrd Center for Parkinson’s Disease and movement disorders. One patient panelist mentioned that because of her medications she sometimes found herself asleep while stopping at red lights. There was an audible gasp from audience members who were astonished that she was still driving

The messages were familiar ones. Get engaged. Get educated. Get involved. Don’t let the disease own you. You have to be your own best advocate.

The news for me involved the Fox program named Partners in Parkinson’s. I was unfamiliar with even its existence. Its goal is a worthy one: filling that gap after diagnosis with an effective support network.

Here’s how they describe themselves: “You are not alone; there are many sources of information and assistance to help you chart your own course for living well with Parkinson’s disease. Connecting Parkinson’s patients, families and caregivers with these resources is the goal of Partners in Parkinson’s. We encourage you to take advantage of the tools we offer, all of which you can access at your own pace from the comfort of home:

“A first- ever online tool to find a movement disorder specialist (created in collaboration with the International Parkinson and
Movement Disorder Society).
The opportunity to connect with an advocate by phone for one-on-one advice and support.

“An educational website with information about Parkinson’s disease, including a downloadable Parkinson’s disease guide.

“”Whether you are newly diagnosed, have been living with Parkinson’s for years or are caring for someone with Parkinson’s, we hope to help you discover the benefits of team.
To do to take advantage of all Partners in Parkinson’s resources visit http://www.partnersinparkinsons.org.”

The Parkinson’s disease advocate is described this way: The person has 1. Skills in educating you about Parkinson’s disease and progression. 2. Knowledge of educational resources for Parkinson’s disease. 3. Suggestions for helping you discuss your symptoms with your doctor.

The program sounds very promising. I intend to learn more about it and pass that along in a future post. One of my questions will be does a person have the same advocate throughout or is it a rotating group you will interact with? How do Advocates know what local resources and providers to recommend?

My larger question has to do with asking the person just diagnosed with Parkinson’s who is at a low ebb emotionally and educationally to have the the wherewithal to seek out the Advocates program. That aside, I am very impressed with the ambitiousness of this venture.

On behalf of those of us who attended, thank you Michael J. Fox Foundation for a very worthwhile day.