Davis Phinney Foundation, Must Read, Palliative Care, Parkinson's exercise

“Counter Punch” Chapter 10

 

Chapter 10:

Exercise Is Medicine

 

My research convinced me exercise was essential to spar effectively with PD. But what kind and where to find it?

 

My first neurologist referred me to Big and Loud training at Florida Hospital -Tampa. That’s physical therapy for stretching tense muscles and voice modulation. I benefited but needed Capital Eexercise.

 

I asked the Big and Loud PTs about that. They pointed me to Tai Chi exercise training.

 

I found Tai Chi a bit mannered and slow. Nice companions, but I was still searching for The Capital E.

 

Next tip was that two Tampa YMCAs were starting high-speed, spinning classes for Parkies. I began one-hour sessions twice a week on the spinning bikes. Felt good. Still do it.

 

But I needed still more.

 

The more came in a newspaper article. Something called Rock Steady Boxing (RSB) was opening in a West Tampa Bay gym 45 miles from my home. Intriguing name. Worth checking out for my blog.

 

To see first what RSB was like, I went to thewebsite
https://www.rocksteadyboxing.org/videos/ and opened the YouTube video “We are Rock Steady Boxing.”

 

Intriguing. I needed to see it for myself.

 

Gym owner Tara Schwartz pitched program benefits this way: “The studies have shown that forced intense exercise has slowed the progression of Parkinson’s. Parkinson’s slows the conduction of the nerve to the muscles, so everything slows down. Boxing does the absolute opposite of that. And it’s a non-contact form of boxing.”

 

Good elevator speech, Tara. I watched one day. Signed up and worked out the next.

 

Ninety intense minutes to pulsating music and demanding, disciplined but supportive instructors: “Elbows up…jab, jab, hook…chest out, stomach in…just 10 more seconds.”

 

Tara’s class typically has 12 to 15 participants who work out ideally at least three days a week.

 

Said Tara: “While focusing on overall fitness, strength training, reaction time and balance, workouts include ring work, focus mitts, heavy bags, speed bags, double ended bags, jump rope, core work, calisthenics and circuit weight training. No boxing experience is necessary, and people of all ages are invited to participate.”

 

Sessions run 90 minutes and typically have 30 minutes of stretching exercises, 30 minutes of weight training and 30 minutes of working on the punching bags.

 

Until the Lightning Strike (Chapter 4) put me down, I made the 90-mile round trip to the Largo gym three times a week.

 

Rock Steady was a tonic. It returned my energy, concentration, focus and stamina to pre-PD levels.

 

I also glimpsed the power that comes with the camaraderie of working a common task with close friends. I will write more about that in Chapter 9.

 

A growing body of research affirms how exercise improves PD symptoms, bends the disease direction in the right way and helps the brain build new neural pathways to replace functions destroyed by PD.

 

NPF gets it right about exercise with this summary of the literature as of 2017 (14):

There is a growing consensus amongst researchers about the short- and long-term benefits of exercise for people with PD.

 

Exercise can benefit in two ways:

 

Symptom management.  Research has shown that exercise can improve gait, balance, tremor, flexibility, grip strength and motor coordination.  Exercise such as treadmill training and biking have all been shown to benefit, as has tai chi and yoga (although more studies are needed).

 

Possibly slowing disease progression.  There is a strong consensus among physicians and physical therapists that improved mobility decreases the risk of falls and some other complications of Parkinson’s.

 

They agree that practicing movement – physical therapy, occupational therapy, and participating in an exercise program – improves mobility. By avoiding complications, you can avoid some of the things that can make PD worse.

 

Beyond this, we know that people who exercise vigorously, for example by doing things like running or riding a bicycle, have fewer changes in their brains caused by aging. Studies in animals suggest that Parkinson’s disease is also improved by exercise. Many neurologists in the NPF Center of Excellence network recommend intense exercise to their patients and also to people who are worried about getting PD because of a family connection. One Parkinson’s Outcomes Projectstudy has proven that people with PD who vigorously exercise for 2.5 hours per week show a slowed decline in quality of life, and the sooner they begin vigorous workouts after diagnosis, the better.

 

The best way to achieve these benefits is to exercise on a consistent basis. People with Parkinson’s enrolled in exercise programs with durations longer than six months, regardless of exercise intensity, have shown significant gains in functional balance and mobility as compared to programs of only two-week or ten-week durations.

 

However, when it comes to exercise and PD, greater intensity equals greater benefits. Experts recommend that people with Parkinson’s, particularly young onset or those in the early stages, exercise with intensity for as long as possible as often as possible.  Your doctor might recommend an hour a day three or four times a week, but most researchers think that the more you do, the more you benefit.

 

Intense exercise is exercise that raises your heart rate and makes you breathe heavily.  Studies have focused on running and bicycle riding, but experts feel that other intense exercise should provide the same benefit.

for you.

 

What happens in the brain to produce these visible benefits? Researchers at the University of Southern California (Fisher et al.) looked at the brains of the mice that had exercised under conditions parallel to a human treadmill study. They found that:

  • Exercising changed neither the amount of dopamine nor the amount of neurons in the animals’ brains.
  • But in the ones that had exercised, the brain cells were using dopamine more efficiently.
  • They also found that exercise improves that efficiency by modifying the areas of the brain where dopamine signals are received – the substantia nigra and basal ganglia.

n

 

Lesson Learned:

Living the “vertical” life means exercise, and plenty of it. Try the many options to find the right fit, then stick with

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“Counter Punch” Chapter 11

 

Chapter 11:

A Better Road

 

We all die. My question is under what circumstances.

 

Like Tom Graboys, I want my last days to be joyous, surrounded by people who matter to me, people I love. Let there be laughter, storytelling, music and wine.

 

I will raise my glass to toast the the words of Mario de Andrade in “The Valuable Time of Maturity.” (Chapter 5)

 

My goal is to arrive at the end satisfied and in peace with my loved ones and my conscience.”

 

I want my friend and collaborator Kirk Hall with me at the joyful end.

 

Kirk is a bear of a man. That, and his rumbling voice, command attention. He’s usually the smartest guy in the room, and people know it. I do.

 

Kirk was and is a marketer. His product now is a cause: better lives for fellow Parkies. He blogs and writes books about PD, his best known being “Window of Opportunity.”

 

We met electronically in 2015. Each of us was urging the Parkinson Disease Foundation to make palliative care that year’s topic of concern. PDF did. We each wrote proposals.

 

Kirk and I were together for the first time in Denver in October 2015 for an international meeting of health care professionals, PD patients and their care partners. The subject was reshaping palliative care specifically for Parkinson’s.

 

The council of Parkies and care partners urged far-reaching changes in PD care. Kirk and I were principal authors of the final report that was published in the online journal Nature in 2017. In it, we invoke the memory of Tom Graboys and his clinical greatness. Excerpts from our report follow:

 

“The council endorses palliative care as an approach to the care of Parkinson’s disease patients and their families that seeks to reduce suffering through spiritual, psychosocial, and medical support. This approach should start at the time of diagnosis, as this is a very challenging time for patients and care partners; includes better emotional support, educational resources, and closer follow-up than is currently standard; and continue through end-of-life care and bereavement…

 

 

 “The Graboys’ allegory contains many of the early stage recommendations of our own prescription for PD Palliative Care and is based on the approach Graboys took with his own patients. While such an approach may not fit every physician or patient we hope, it provides some useful examples of patient-centered care for PD.

 

 

“We envision a new, improved approach to Palliative Care based on a ‘three-legged stool’ including the patient’s primary care physician and neurologist (leg 1), a PD palliative care team (leg 2), and a PD support entity (leg 3). The ‘three legs’ are meant to provide support for patients, care partners, and families throughout the PD journey.

 

“Early stage: diagnosis to 5 years (honeymoon period)

 

“Given confusion and misperceptions about palliative care, we suggest using the term ‘supportive care’ and discussing this concept as PD Life Enhancement, or something similar. Palliative care should provide a comprehensive, coordinated, and consistent approach for the medical and PD support communities designed to maximize quality of life for patients, care partners, and families starting at diagnosis and to reduce stress for the duration of the disease and bereavement period.

 

“The key points for diagnosis were included in the Graboys allegory. Another important element is sharing informational resources. We recommend scheduling follow-up a month after diagnosis since many patients are ‘shell-shocked’ and unable to absorb much beyond the words PD. This is an opportunity for the doctor to assess how the patient and care partner are doing, ask if they have reviewed information resources, and answer questions.

 

 “We recommend an appointment a year after diagnosis to assess the patient’s and care partner’s ‘readiness’ to be provided with additional informational resource. Most people should be ready at that point and some may have already begun this process on their own. If not, we recommend discussing why they are not ready.

 

“Some patients take the ‘what I don’t know won’t hurt me’ approach. It is important to share that in general, patients and care partners who do best in managing PD take ‘ownership’ of it so that they can properly advocate for themselves and make good choices.

 

“We recommend participation in self-efficacy or chronic disease management education programs. This is also a good time to revisit the potential benefits of joining a support group. The doctor should have a working relationship with regional and local support groups.

 

 “Middle stage: 5 years to advent of symptoms that substantially affect daily living

 

“The middle stage is a crucial time for patients, care partners, and families. It is a time when learning can take place relative to late stage. Plans and decisions can be made to make the later stage easier. Wrestling with these issues, including faith, can create acceptance and peace of mind, making the last stage of the journey far less stressful. Tasks should include:

A personal plan for taking ownership of possible outcomes, including the possibility of financial challenges.

Develop end of life wish list and legal documents including advance directives.

Discuss with doctor what his/her role will be in end stage.

Discuss care partner plan for assistance and self-care.

Begin assessing need for in-home safety and for equipment.

Consider counseling to address faith/spiritual issues or concerns.

 

“Many patients, care partners, and families miss this extremely important opportunity for a variety of reasons. They may not have as much warning as they think before they are in the thick of late stage and end up scurrying around to find resources, fighting among themselves at a time when they need to be focused on caring for each other. They may not want to face the inevitable decline of their loved one and the difficult decisions this entails, so they take the ‘ostrich’ approach by sticking their heads in the sand. PD palliative care clinics may have value in helping families in this stage.

 

 

“Late stage: advent of significant disability/hospice to death/bereavement

 

“In our model, the late stage becomes a matter of implementing plans and preferences identified in the middle stage including hospice when appropriate. Legal paperwork will be available to minimize confusion, misunderstandings, or other ‘bumps in the road.’ Of course, it is not likely that all developments can be foreseen and planned for, but these should be the exception. If the plan includes contingencies based on the nature of specific health issues as they unfold, there can be ‘course adjustments’ as opposed to confusion and stress related to confrontation of unanticipated issues.

 

 “From our perspective it seems that many neurologists are uncomfortable remaining involved after they can no longer ‘fix’ their patient. Training in palliative care or involvement of palliative medicine specialists could help remedy this issue.

 

“It is extremely important to be mindful of care partner stress/burnout at this stage, and this is an area where a palliative care team could and should add great value. The team needs to be aware that the care partner can become so overwhelmed that they do not take the time or have the energy to reach out for help.

 

“Medical community proposal

 

“We proposed a fundamental shift in the mindset and training of doctors starting in medical school to facilitate the changes discussed, including getting to know patients and care partners beyond their medical records and the importance of remaining engaged in late stage to help ensure a ‘successful transition to death.’ We would describe this as one in which the care partner, family, and medical team can feel at peace because they did everything possible to honor the patient’s wishes about how he/she wanted to die.

 

 

 “Another recommended area of focus for medical schools is the ethical aspects of working with patients who would be better served elsewhere. This is a sensitive subject because it shines a spotlight on doctors who choose to continue treating a patient despite knowing better options exist. We have seen many patients in our support groups receive inappropriate treatments or be incorrectly told there is nothing more to offer by doctors without PD-specific knowledge or skills.

 

This, I believe, is a Better Road for the Parkinson’s journey. I hope you do, too.

 

-30-

 

 

Davis Phinney Foundation, Must Read, Parkinson's Disease, Parkinson's Patient Care

“Counter Punch” Epilogue

 

Epilogue

 

I sat with 800 other Parkies and care partners at a Davis Phinney Foundation pep rally on a balmy Florida morning in 2017.

 

I heard a word that electrified me: persevere. “Persevere against the eroding power of PD,” the speaker said.

 

Tim Hague Sr. also challenged me to consider the powerful role “communities” play in a person’s life. He is a PD advocate/educator/motivator living in Winnipeg, Alberta.

 

Hague is best known for 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 the race 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 referred to the communities in his life: family, his hometown Winnipeg, fellow Parkies, his health care team.

 

I counted the communities in my life: Immediate and extended family; PD SELFers; Rock Steady Boxing compatriots; Methodist church, The Portico; Rotary International; PD support group members; Florida newspaper editors; Golf group I once belonged to; Duke friends; Milwaukee Country Day School classmates. The list goes on.

 

Each community commands my attention, requires nourishment and provides me support in large and small ways. I count on them to fuel my perseverance against Parkinson’s.

 

My life as a newspaper editor was about building strong, resourceful, resilient newsrooms committed to serving their geographic communities with accurate, timely and compelling stories.

 

My commitment to the Parkie community is service through reporting and advocacy onwww. shufflingeditor.com. “Service Above Self,” the Rotary motto, speaks to my deep investment in bringing PD SELF to the Tampa Bay region.

 

My friend Rich Harwood, president of the civic engagement Harwood Institute, wrote about my community commitments when I retired from the Tampa Tribune in 2006:

 

A good man, Gil Thelen, the publisher of The Tampa Tribune, retired last week, and it’s worth pausing today to think about his work and our own work. In my travels, I have known few people like Thelen who have been able to so authentically combine a sense of integrity, grittiness, innovation, and commitment to his profession and public life….

In a statement he sent around to colleagues and friends last week, Thelen used the word “joy” to describe his work. He said, “There must be joy in making the paper if customers are going to find joy in reading it.” He then called his colleagues “joy makers.”

 

Thelen is 67 years old. I don’t know very many people – of any age – who think of their work as making joy. Indeed, think about the words we usually ascribe to the topsy-turvy world of the news media; two that come immediately to mind are “sensationalism” and “hype.”

 

I work in two geographic and Parkie communities. One is the Northern Tampa Bay region (Hillsborough, Pinellas and Pasco counties) where Struby and I lived happily for almost 20 years.

 

The second is Macon, GA, where Struby and I moved in November 2017. Our new home is the splendid continuing care community, Carlyle Place.

 

We moved to be closer to family.

 

Struby is from Macon. Her brother Neil Struby and sister-in-law Hazel Struby live there, as does Niece Hazel Caldwell in nearby Forsyth, GA.

 

My brother Neil Thelen and family live two hours away in Atlanta.

 

Struby has potential help should my Parkinson’s progression go badly, such as severe dementia. I preach preparedness. I need to live it.

 

My Tampa Parkinson’s community revolves around eight 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 eight 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 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 will persevere. Promise made. Promise to be delivered.”

 

PDAG’s action program is development of a groundbreaking program Me-Over-PD (MOPD) to reach newly diagnosed people with Parkinson’s. Those newly diagnosed individuals will receive — for the first time anywhere — real-time, verified, actionable, local information to assist them in navigating this mysterious malady.

 

The consortium comprises Tampa graduates of the PD Self Actualization Program of the Parkinson’s Foundation and faculty of the University of South Florida’s Zimmerman School of Advertising & Mass Communications.

 

The unique purpose of MOPD to deliver locally actionable information and resources to newly diagnosed Parkinson’s patients and their care partners. Both are often overwhelmed with complex information about treatment alternatives.

 

The heart of MOPD is a live database of crucial resourcesthat include neurologists specializing in mobility diseases, physical therapists, speech therapists, occupational therapists, dietitians, and personal trainers.

 

No such database exists anywhere for the newly diagnosed Parkinson’s person and his/her general practitioner or treating neurologist.  Existing “help lines” have limited highly local information and lack resources for constant verification and updating.

 

The database will be used to prepare a brochure (“Road Map”) distributed through hospitals, neurology clinics, drug stores, YMCAs, agencies for the aging and doctors’ offices, to name but a few.

 

The target audience, for starters, is Parkinson’s sufferers in the northern Tampa Bay region.  Based upon lessons learned from the Tampa Bay rollout, MOPD intends to extend its reach by partnering with local and regional community support agencies.

 

We believethat newly diagnosed Parkinson’s sufferers can substantially increase the suitability of their treatments along with the quality of their lives if they are fully informed of what resources are needed, where these resources are available and how to access them.

 

MOPD is a Florida non-profit corporation. It received 501 C. 3 approval in April, 2018. MOPD has received a start-up contribution of $5,000 from a Detroit donor.

 

MOPD plans to be operational by the end of 2018. Janelle Applequist, assistant professor at the Zimmerman School is leading operations. I am president.

 

In Macon, Struby and I host meetings in which Parkies and care partners discuss the nuances of PD and design action steps to improve care for all patients in Middle Georgia. Those have included a lite version of MOPD resources and pursuit of additional exercise programs.

I am working with Mercer University’s medical school to improve Parkinson’s awareness among future physicians.

 

 

As of mid-2018, Georgia lacks a care system for patients to enter for guidance and assistance in making necessary lifestyle improvements. Those include diet, exercise, social engagement and mental discipline.

We are working to pool the university and health-care-organization assets we have in Middle Georgia and create our own ”system” of care.

Doing both would move us to the front rank of states doing well by citizens who are fighting back against their enigmatic malady.

 

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Update on Shuffling Editor’s Tampa and Macon Work

I wrote the following letter April 10 to donors to Struby’s and my Parkinson’s work in Tampa and Macon.

Dear xxx,

I write to bring you up to date on my Parkinson’s work. I thank you again for your indispensable help to the Davis Phinney Foundation and Me-Over-PD Foundation.

I work in two geographic and Parkinson communities. One is in the Northern Tampa Bay region (Hillsborough, Pinellas and Pasco counties) where Struby and I lived happily for almost 20 years.

The second is Macon, GA, where Struby and I moved in November 2017. Our new home is the splendid continuing care community, Carlyle Place.

My Tampa Parkinson’s community revolves around eight 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)…

“Our goal is to help one another out-wit, out-flank and counter-punch this unwelcome tenant in our brains.”

PDAG’s action program is development of a groundbreaking program Me-Over-PD (MOPD) to reach newly diagnosed people with Parkinson’s. Those newly diagnosed individuals will receive — for the first time anywhere — real-time, verified, actionable, local information to assist them in navigating this mysterious malady.

The consortium comprises Tampa graduates of the PD Self Actualization Program of the Parkinson’s Foundation and faculty and students at the University of South Florida’s Zimmerman School of Advertising & Mass Communications.

The heart of MOPD is a live database of crucial resources that include neurologists specializing in mobility diseases, physical therapists, speech therapists, occupational therapists, dietitians and personal trainers.

No such database exists anywhere for the newly diagnosed Parkinson’s person and his/her general practitioner or treating neurologist.  Existing “help lines” have limited highly local information and lack resources for constant verification and updating.

The database will be used to prepare a brochure (“Road Map”) distributed through hospitals, neurology clinics, drug stores, YMCAs, agencies for the aging and doctors’ offices, to name but a few.

The target audience, for starters, is Parkinson’s sufferers in the northern Tampa Bay region.  Based upon lessons learned from the Tampa Bay rollout, MOPD intends to extend its reach by partnering with local and regional community support agencies.

We believe that newly diagnosed Parkinson’s sufferers can substantially increase the suitability of their treatments along with the quality of their lives if they are fully informed of what resources are needed, where these resources are available and how to access them.

MOPD is a Florida non-profit corporation. It received 501C(3) approval in April 2018. MOPD received a start-up contribution of $5,000 from a Detroit donor.

MOPD plans to be operational by the end of 2018. Janelle Applequist, assistant professor at the Zimmerman School is leading operations. I am president.

In Macon, Struby and I host meetings in which Parkies and care partners discuss the nuances of PD and design action steps to improve care for all patients in Middle Georgia. Those have included a lite version of MOPD resources and pursuit of additional exercise programs.

I am working with Mercer University’s medical school to improve Parkinson’s awareness among future physicians.

As of mid-2018, Georgia —  like most other states — lacks a care system for patients to enter for guidance and assistance in making necessary lifestyle improvements. Those include diet, exercise, social engagement and mental discipline.

We are working to pool the university and health-care-organization assets available in Middle Georgia and create our own ”system” of care.

Doing both would move us to the front rank of states doing well by citizens who are fighting back against their enigmatic malady.

All the best,

Gil

 

Davis Phinney Foundation, Parkinson's Disease, Parkinson's Patient Care

PD Call To Action For Middle Georgia

Middle Georgia has the assets to become a model of excellence for the care of Parkinson’s disease sufferers. Our challenge is to mesh those assets into a true system.

April is Parkinson’s Awareness Month. An important awareness point is how little information patients often receive at diagnosis.

All too frequently, they get a prescription and are told to return in three months for a follow up consultation.

That’s it.

There is little guidance offered patients on finding valid information about the dread neurological condition or their future with it. Plus, there is no PD care system for them to enter.

Patients are left alone, very alone, with their incurable but treatable malady

PD is an ultimately unknowable condition. Each case is unique to the person. Mine is mostly internal, not readily visible. (intestinal, urinary, equilibrium, balance, temperature control)

I was diagnosed in 2014, eight or more years after, in retrospect, my first symptoms appeared. It often requires destruction of 70-80% of dopamine-producing neurons in the brain for full-blown Parkinson’s to manifest itself.

Dopamine is the chemical that aids nerves communicate with muscles, a kind of body-produced WD40.

The numbers about Parkinson’s incidence are approximations. One million cases in the U.S. Seven million worldwide. Fifty thousand new cases a year in the U.S.

Second most common neurological disorder after Alzheimer’s. Incidence is forecast to double in the next 20 years.

Georgia natives and residents are particularly at risk.

Agent Orange is a known causal agent. Georgia has large numbers of veterans who served in Vietnam and were exposed to Agent Orange.

Certain agricultural chemicals are also linked to PD. We are a rural, agricultural state.

A key answer and action step is to strengthen the teamwork between family doctors who diagnose PD and expert neurologists who prescribe a treatment plan.

Equally challenging is the lack of a care system for patients to enter for guidance and assistance in making necessary lifestyle improvements. Those include diet, exercise, social engagement and mental discipline.

We can pool the university, health-care-organization and foundation assets we have in Middle Georgia and create our own ”system” of care.

Doing both would move us to the front rank of states doing well by citizens who are fighting back against their enigmatic malady.

An important marker of a state’s vigor in PD treatment, for me, is the availability of an acclaimed exercise program named Rock Steady Boxing (RSB).

Florida has 32 RSB franchises. North Carolina 19. Tennessee 9. South Carolina 7. Alabama 6.

Until recently, Georgia had but one, in northwest Atlanta. Savannah and August are recent additions.

That’s unacceptable.

Georgia could vault to the front rank by strengthening the ties between family physicians and expert neurologists and by creating an effective, after-diagnosis care system.

Let’s start doing both.

Today.

 

 

 

 

 

 

 

 

Davis Phinney Foundation, Must Read, National Parkinson's Foundation, Palliative Care, Parkinson's Disease, Parkinson's Patient Care, Uncategorized

Heads Up Middle Georgia! Your patient-care problems are revealed.

Listen Up Middle Georgia!

We have important work to do assisting people “Live Well With Their Parkinson’s.”

Thirteen Parkinson’s people — patients and care partners— recounted their journeys to students at the Mercer School of Medicine Tuesday, March 6.

Bottom line: The Thirteen got scarce information at diagnosis about the disease or their future with it. Plus, there was no PD care system for them to enter.

They were left alone, very alone, with their incurable but treatable malady

Parkinson’s is the second most prevalent neurological disease after Alzheimer’s. Incidence is forecast to double in the next 20 years.

Georgia natives and residents are particularly at risk.

Agent Orange is a known causal agent. Georgia has large numbers of veterans who served in Vietnam and were exposed to Agent Orange.

Certain agricultural chemicals are also linked to PD. We are a rural, agricultural state.

A key answer and action step is to strengthen the teamwork between family doctors who diagnose PD and expert neurologists who prescribe a treatment plan.

Equally challenging is the lack of a care system for patients to enter for guidance and assistance in making necessary lifestyle improvements. Those include diet, exercise, social engagement and mental discipline.

We can pool the university and health-care-organization assets we have in Middle Georgia and create our own ”system” of care.

Doing both would move us to the front rank of states doing well by citizens who are fighting back against their enigmatic malady.

An important marker of a state’s vigor in PD treatment is the availability of an acclaimed exercise program named Rock Steady Boxing (RSB).

Florida has 32 RSB franchises; North Carolina 19; Tennessee 9; South Carolina 7; Alabama 6.

Until recently, Georgia had but one, in northwest Atlanta. Savannah and August are recent additions.

That’s unacceptable.

Georgia could vault to the front rank by strengthening the ties between family physicians and expert neurologists and by creating an effective, after-diagnosis care “system.”

Let’s start doing both.

Today.

 

 

 

 

 

 

 

 

 

Uncategorized

Breakthrough on PD Patient Care

A dream for many of us is coming true in Ohio. OhioHealth, a nonprofit medical system, just announced construction of a 30,000 square foot, $12.1 million wellness center in Columbus. (Details below.)

The focus is PD and related maladies. It will be one-shop stop for “living well” necessities, such as exercise, diet and sociability.

The Me-Over-PD initiative in Tampa envisions such a center as the next step after patients are empowered with vital, local, self-care information. Similarly,  Benzi Kluger’s and Kirk Hall’s  team-based, palliative-care field test in Colorado, California and Alberta points in the same direction.

Michael Okun at the University of Florida is raising funds for a similar center at the University of Florida. Center planning is underway in Denver and Boulder, CO. David Riley’s recent InMotion center in Cleveland, Ohio, operates on similar lines. So does Parkinson’s Place in Sarasota, FL.

……………………………………………………………………………………………..

“Less than three years after opening the doors to the state-of-the-art OhioHealth Neuroscience Center at OhioHealth Riverside Methodist Hospital, OhioHealth is proud to announce plans for a first-of-its-kind neuroscience wellness center. The center will be located near the Riverside Methodist Hospital campus.

“The neuroscience wellness center will extend OhioHealth’s continuum of care for those living with neurological conditions – such as Parkinson’s, stroke, multiple sclerosis and others – by providing them with programs, equipment, education, and experts in prevention and rehabilitation to help manage their conditions and live more active lives.

‘”A patient’s care doesn’t stop when they leave the hospital or the doctor’s office,” said Dr. Janet Bay, system vice president, OhioHealth Neuroscience. ‘They need to stay active and fit in mind and body – physically, mentally, and spiritually. Our neuroscience wellness center represents our best vision for a place that can be the center of all of that for them. As leaders, locally and nationally, in the treatment of neurological conditions, our new center will impact patient’s lives in a new way and we are so very proud to be bringing it to those who will benefit from it.’

“Programs and classes at the center will include exercise, nutrition, stress reduction, yoga, caregiver support programs, and more. Additionally, it will bring already-established OhioHealth wellness programs, such as OhioHealth Delay the DiseaseOhioHealth Fore Hope, the OhioHealth MS Wellness Program, Staying Fit Following Stroke and Brain Injury and Gerlach Center for Senior Health clinics under one roof. The center will also serve as an incubator for development of new programming

‘”We have made a tremendous commitment to neuroscience in the communities we serve,” said Dave Blom, president and CEO of OhioHealth. “We have a passion for giving patients and their families the very best healthcare, no matter where they are on that journey. We believe wellness is a significant part of that journey and that the new neuroscience wellness center will be a big step forward in that area.’

“Preliminary plans call for a 30,000 square-foot facility including, but not limited to;

  • Two large multipurpose fitness studios that can be split for simultaneous classes
  • Indoor cycling (spinning) studio and indoor walking trail
  • John J. Gerlach Center clinic programs and support services specifically for older adults
  • An outdoor program area located immediately outside of the building

The new facility will cost $12.1 million to design and build with $10 million of that coming from the Building Strength for Life campaign led by the OhioHealth Foundation. The generous McConnell Foundation gift of $6 million represents 60 percent of that goal. Construction is expected to be complete in the next two years.

‘”We are pleased to be involved in such a critical and groundbreaking approach to wellness care in the field of neuroscience,’ said John P. McConnell, Chairman and CEO of Worthington Industries. “Our family believes in the vision of OhioHealth in providing exceptional care in the communities they serve. The neuroscience wellness center is another example of their leadership on healthcare issues that are important to all of us.’

“The McConnell family’s long-standing philanthropic partnership with OhioHealth spans nearly 30 years. Generous gifts from the McConnell Foundation, which now total more than $25 million dollars, have been instrumental in leading and advancing medical care innovations at OhioHealth. This latest gift will continue to ensure the OhioHealth neuroscience mission of delaying the progression of disease, improving outcomes, and reducing costs.

‘“We are filled with gratitude to the McConnell family for this extraordinary gift to support our neuroscience wellness center and the people who will benefit from the services,” said Karen Morrison, president of the OhioHealth Foundation and senior vice president, OhioHealth. ‘“We are inspired by the passion, dedication and generosity of John P. McConnell’s unwavering commitment to OhioHealth and to this community.’”

 

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Stress: PD’s Best Friend

I came across a cool column I share on the stress bugaboo.

Also, my new Georgia license late just arrived. SHFL ED.

Giggles!

When Living With Parkinson’s, Ax the Stress

When Living With Parkinson’s, Ax the Stress

Sherri Journeying Through

Stressed. This is what my thesaurus had to say: “To ‘stress’ is to emphasize.” Emphasize what? The fact that your life is out of control? The fact that you’re not handling things well?

Being “under stress” means that these two elements are wearing on you — being out of control and not handling things well. However, there is still some control. A minute amount, but then, are we ever really in control?

Perhaps something, somewhere, somehow, in some way is insisting on driving you crazy. More than likely it is we, ourselves, who are driving “us” crazy. We are the ones who insist on allowing something or someone, in some way, to get to us, to rob our joy.

For example, as I write this my husband and I are driving on Interstate 10, going from Phoenix to Los Angeles. We are going the speed limit at 75 mph. A Chevy Blazer with a roof rack piled high with camping gear and a back window with a sticker that says, “Desert Center Fellowship,” plus a license plate that reads “PASTOR,” zooms past. It is definitely exceeding the speed limit of 75 mph. This is after he has been tailgating us, we who are behind a semi-truck that is exceeding his speed limit. The first semi-truck pulls in front of another semi that is passing us on the right, then quickly passes the one in front of us and then pulls in front of him, cuts over to the left of him, and pulls in front of another car. It is moments such as this that drivers tend to get stressed.

I continue writing as my husband continues to drive. Approximately 10 minutes later, from out of nowhere, the Pastor of Desert Center Fellowship zooms by us once more, and once more, he swerves to the right to pass a car that is dawdling down I-10 at the much-too-slow speed of at least 85 mph.

Now, many drivers I know would be stressed by now. They are not merely under stress. They are stressing out big time, and at this point, it is their choice. At times like these in our lives, we allow stress to rob our joy. We allow situations and other people to insist on their agendas, hammer home their opinions, spotlight on the negative, underline our failures, dwell on our mistakes.

You know what I’ve learned that was refreshingly reminded to me today? People like “Pastor Desert Center Fellowship” don’t cause my stress. I do. Things like being cut off in traffic don’t cause my stress. I do. Situations like dirty dishes in the sink left for me to do don’t cause my stress. I do. I allow myself to “climb under” this stuff  — because I choose to. I choose to let it get the best of me and drag me down so that I fit under it, let it cover me, and dwell fitfully within it as it wraps its not-so-warm, fuzzy blanket around me. I have allowed it to define my moment, my day. I have become the “s” word: Stressed out.

I am so grateful God has not given up on me, that He still finds me teachable. I am grateful I have learned not to always give in to stress, as was once so easy to do. Now I am much quicker to recognize the hold it strives to have on me. If I allow it to cover me, if I climb under it, before I know it, I am not just “under” stress; it has begun to consume me, define me, highlight my life, insist on having its way, and ultimately, I have allowed it to steal my joy.

Disease. Loss. Pain. Financial burdens. Relationships. All things in life that can create stress, if we allow them. We cannot control everything, if anything. Stress allows us to deal with this “life” — this disease — ineffectively. What is effective? I have found two things to be most effective for me: Forgiveness and thankfulness.

I had a current, ongoing situation that had been stressful for me. After talking to a good friend recently, I realized I hadn’t forgiven the person with whom I had been struggling. I’d allowed the pain to grow because I’d sought control instead of forgiveness. I had allowed the situation to highly frustrate me, and at times, rob my state of mind, my joy.

Forgiveness! Do they deserve it? Not my call. Do I need to do it? You bet. By forgiving, I can find things in that situation for which to give thanks, and by doing that, my focus returns to its proper place — on God being in control. When the right perspective is there, joy overflows.

Is forgiveness easy? No way. Is it necessary? For me, yes. I don’t like the word that starts with an “s” and if I refuse to forgive, refuse to see the hard things in life to be thankful for, that “s” word takes control, consumes my joy, and I am nothing more than … stressed.

That isn’t where I choose to live. Joy is a much better state of mind and with all that a person who has  Parkinson’s has to deal with, don’t you think that’s a better place to be? Living with joy and axing the stress in your life?

Sherri was diagnosed with Young Onset Parkinson’s disease over fifteen years ago. She can be found working in her garden, going for walks, taking pictures, or reading books to her three favorite grandkids.

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Two Interesting Takes on Exercise

One is conversational and down-home by a retired physician. http://www.thegardenisland.com/2018/01/10/lifestyles/is-vigorous-exercise-a-miracle-for-parkinsons/

The other is denser.  http://longevity.stanford.edu/blog/2017/03/23/the-best-exercise-for-aging-muscles-the-new-york-times/

Both point clearly at the value of “forced exercise.” In plain English that means REALLY breaking a sweat.

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Seeking To Build A Middle Georgia PD Study Group

This post is adapted from a column published in The Telegraph (Macon, GA) on Jan. 1, 2018.

Parkinson’s is not a death sentence. It is possible to live well, or at least better, with this mysterious malady. Consider these ringing words from Dr. Peter Schmidt, chief research and clinical officer of the Parkinson’s Foundation:

“When people describe Parkinson’s disease, they often define it as a disease that is incurable and without treatment to slow its progression. You can change how Parkinson’s affects you, but it takes hard work and dedication.

“The key is taking charge of the disease by aggressively seeking the most expert care available and engaging your brain through rigorous exercise and mental conditioning.”

I am seeking Middle Georgia Parkinson’s people willing to accept Dr. Schmidt’s challenge to engage fully their PD and relentlessly fight back against the beast.

I am organizing a Middle Georgia group of Parkinson’s people willing to study the condition in depth and translate that learning into personal action steps. I am experienced in this area. I was diagnosed with Parkinson’s in 2014.

I was a leader of the PD Self National Training Program. http://parkinson.org/expert-care/Expert-Care-Programs/Empower-the-Newly-Diagnosed

I am a national PD patient advocate (Ambassador) for the Davis Phinney (Parkinson’s) Foundation. I work in Georgia, Florida and North Carolina.

My wife and I moved to Macon in November after 20 years in Tampa. I was a newspaper editor and publisher (the late Tampa Tribune).

I will start the Middle Georgia study group in January. If you are interested in more information please write me at gthelen1@icloud.com or call me at 813-787-3886.