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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.

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“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.

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A Cowboy’s Anchor Points

 

A fellow new to town needs anchor points to properly settle in. Kind of like a cowboy in the 1870s.

A fine stable for my horse (dual-turbo, Soul Red Mazda CX9) is close by. Macon’s Five Star Mazda refreshed Soul Red after her three hard days on the trail to Tampa, Columbia (SC) and Charlotte.

Provisions are well provided at the fine hard-goods store (Ace Hardware on Forsyth Road). My new electric grill for cooking steaks is on order.

Liquor for wind down comes from Pinebrook, a well-appointed and “clean” store also on Forsyth. “We’re one of only four American-owned package stores in Macon,” says owner Harold Atkinson. “Free ice for your parties. And I know wines.”

Soft Goods come from Jos. A. Bank at River Crossing Mall. The store is not quite as customer friendly as the Bank store in Wesley Chapel, outside Tampa. I have introduced myself four times to the Macon store manager. She has yet to greet me by name. The clothes are still fine.

Music for the soul is delivered by Jeff Smith at Sound & Video Solutions. The whole house Martin Logan and Bose sound system is extraordinary.

A place to hang my hat (ball cap in my case) is Carlyle Place, the beautiful and very lively seniors community near Wesleyan College.

This itinerant “cowboy’s” anchors in Macon are set quite nicely.

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The Tampa Tribune’s Final Counteroffensive

The late, great Gene Patterson commanded a tank in George S. Patton’s WWII army.

Patterson, 43 years later, commanded scores of St, Petersburg Times journalists to flood the bridges eastward into Tampa Tribune Land.

Gene broke the “Gentlemen’s Agreement” that for decades gave the Times newspaper sovereignty in West Tampa Bay– the Trib had exclusivity in East Bay.

Demographics dictated the move. To grow, the water-locked Times had to move east. Pinellas was becoming built out. There was only the Gulf of Mexico west.

The strategic intent was beautifully simple: The Times would be the only paper in populous and fast growing North Tampa Bay. (The Bradenton Herald and Sarasota Herald Tribune would continue to split South Tampa Bay,)

The comfortably profitable Trib, and its complacent owners, Media General of Richmond, were stunned.

The fight between the not-for-profit Times (owned by the school for journalists, Poynter Institute) and the for-profit Trib, went on for 29 years.

It ended May 3, 2016.

Times Leader Paul Tash, accompanied by armed security guards, entered the Tribune building and told staffers this: The Times had purchased the recession-crippled Trib and would shutter it immediately. There would be no staff-produced final edition, as had been the tradition when a paper died.

That saga flashed through my mind on Oct. 26, a lovely, loving evening at the fittingly named Love’s Artifacts Bar and Grill in South Tampa. The occasion was a Tribune alum party for Struby and me on the eve of our departure for a new home in Macon, Georgia.

Many of the Trib foot soldiers were there. That’s you Donna, Allyn, Michelle, Marilyn, Kirk, Kim, B.C., and so many more of my fine, talented staff.

I was privileged to be part of the Trib’s last counter attack against the Times. It came between the mid-90s and 2006, my final year as publisher.

The tips of the spear were Knight-Ridder alums, led by former Wichita Eagle Publisher Reid Ashe, a brilliant MIT grad turned journalist. His gift was attracting and empowering very determined combatants.

Reid got me as editor from The State. Advertising and marketing dynamos Steve Weaver (San Jose Mercury News) and Bruce Faulmann (Bradenton Herald) signed on. They joined an already solid executive team headed by CFO Kermit Kauffman.

That fortified team was the strongest I’d seen in my 30 years as an editor.

We threw the entire Knight-Ridder playbook at the Times in our counter offensive.

Customer obsession. Re-energized local news coverage. Hard-digging enterprise reporting and deep investigations. New attention to fast growing suburbs. Multimedia journalism with WFLA-TV. Solidified branding (“Life Printed Daily”).

It worked.

By 2006 we had record profits and growing reader and advertising market share. The Times took worried notice,

Then came the Great Recession and the triumph of online news and marketing. Media General, never comfortable managing its only competitive market, withdrew combat resources it had given the Tribune.

The rest is history.

A rollicking good fight it was. While it lasted.

 

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Macon, Georgia: Take One

The pickup trucks, everywhere.

Chromed. Uplifted. Ginormous wheels and tires. Throaty exhaust. Aggressive vehicles… and drivers to match.

Why so many? And SO gussied up?

“It’s not real exciting around here,” explained ace saleswoman at the splendid Ace Hardware on Forsyth Road. “Our trucks are an adrenaline rush.” (Not to mention, she said, a perfect, broadside target for the ubiquitous deer.)

The Macon community is human-scaled, rarely in a hurry. Not slow; just measured.

Polite is good here, most encounters at least so far. Nice community fabric to build a future on.

Some say the town is “cliquish.” That seems to connote long-timers versus not-so long-timers, as in 40-50 years. Go figure.

My wife has thrown the warm and welcoming members of our new seniors sub-community, stately Carlyle Place, for a bit of a loop.

The most senior remember her as Cynthia Jane Struby, daughter of the late and distinguished, long-time leader (president and publisher) of The Macon Telegraph. Daughter also of the late Jane Spearman Struby, every ounce a gracious, Macon mainstay of long lineage.

That smart Cynthia Jane went off to her own solid newspaper career in Columbia, S.C., Alexandria, Va. (managing editor before age 30), Charlotte and finally Myrtle Beach, S.C. She retired to raise her two boys, now men.

First with her closest high school friends, then at Furman, then later in newspapers, people called her Struby, not Cynthia. She liked it. (“I don’t see myself looking like a Cynthia.”)

She was “Struby” when I met and married her while we were both editors at The Charlotte Observer. (That was 38 years ago, for the curious.)

So here we are at Carlyle, our first week in town, arriving from Tampa. Struby is a clique “cross-dresser,” Old Maconite returning from 45-plus years in the Wilderness of other places..

Heads are spinning at wonderful Carlyle Place.

But residents will come to remember it’s “Struby,” not Cynthia.

 

 

 

 

 

 

 

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KASH, The Thelens’ Mover

Weird time it is at Chez Thelen/Tampa, Saturday, Nov. 4.

Packers have reduced our life to a series of 2-to-4-foot-tall, boxes– rows of centurions at alert. Movers come Sunday, led by 18-wheeling chap named Kash. KASH!!! (He gotta be packing heat inside his leather.)

Wheels up to Macon Monday, probably, maybe. All depends on the loading speed of KASH and his team.

New Carlyle Place home, 2700 sq. ft., awaits–half the size of Tampa home. Struby has blown up the kitchen, rejiggered the rest of house to fit her very clear vision. Getting great new blue, king bed, “Quincy” (by Ethan Allen, of course.) Quincy as in John Q. Adams. I spotted it. Love it.

My other treats are an under-construction Cigar porch (man cave) and a boffo audio system. (That’s you AV master, Jeff Smith.) Wolfgang and Grateful Dead will never have sounded better.

I make my first public appearance in Macon area Nov. 14. Forsyth Kiwanis club mini-speech on PD. Will dial down my “relentlessness” (re PD patient advocacy). Macon VERY conservative and quite polite.

Picking up new set of brain “mufflers” Monday from Midas shop. Mufflers to be grafted between my wicked cortex and too-often ribald tongue.

Mufflers are a survival necessity in a community whose headliner these days is Eric Ericson, Alt Right guru. (His home was picketed by two Trumpites because he would not endorse Donald’s candidacy. Yes, that sound you heard was my throat clearing.)

My PD is behaving well. First order of business next week, at Carlyle’s superb exercise facility, is finding a personal trainer. Must fill void left by end of 3-a -week Rock Steady Boxing and 2-a-week spinning in Tampa. (Only RSB program in ALL of Georgia is a bazillion miles north in Atlanta.) Exercise is my killer App against the Parkinson’s Beast.

To understate things, a tad, my Davis Phinney Foundation, patient-advocacy work in Georgia looms large.

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

Rock Steady Fighting to Survive in Tampa

Rock Steady Boxing (RSB) is thriving nationwide. Except in Tampa.

This proven, highly effective exercise program for People With Parkinson’s (Parkies, in my vernacular) is short of enrollees in Tampa. The monthly average is 10. The same class in nearby St. Petersburg (Pinellas County, to be exact) averages 34 boxers.

Program director Jordan Brannon can’t explain the difference. “Same metro area. Same people. I am puzzled.”

She told Tampa boxers their program will end December 31 unless 20 steadfast participants are aboard. That’s her breakeven financial number. She is redoubling her recruitment efforts in Tampa.

I am in the Tampa program. See below for the letter I wrote Oct. 18 to University of South Florida Health (Neurology). USF Neurology responded Oct. 24 (below).

The Rock Steady difficulties are the second setback for PD patient-care initiatives in Tampa Bay.

USF Health (Neurology) was chosen as one of nine national 2016-17 test sites for the PD SELF information-and-action training program for Parkies. Seven of the nine sites were renewed for 2017-18. Tampa was not. (I was a “co-facilitator” of the Tampa program for part of its run.)

Diane Cook, PD SELF program director, has written that results of the 2016-17 rollout “were very positive and showed significant improvement in self-efficacy leading to improved anxiety, depression, stress and perceived support.”

University of South Florida Parkinson’s Disease and Movement Disorders Center is a Parkinson’s Foundation National Center of Excellence.

My letter to Dr. Clifton Gooch, Neurology Director at USF Health follows:

Dear Dr. Gooch,

I write representing the urgent concerns of the 10 regular adherents of Rock Steady Boxing/Tampa.

We need the help of your physicians and staff to ensure the future of the Tampa RSB program. Program Director Jordan Brannon (a USF grad) told us Monday that the program is financially not viable. Unless there are 20 active participants by year’s end, the program will close.

Brannon said she will redouble her recruitment efforts.

Evidence is overwhelming and unassailable of RSB’s restorative power for PWP. RSB is expanding rapidly nationwide and worldwide. We will be an outlier should we lose the Tampa program.

USF Neurology, through the Parkinson’s Foundation (Miami office), has financially supported Brannon in creating and expanding her Largo and Tampa RSB programs.

We request USF neurologists redouble their efforts to bring RSB to patients’ attention. A physician’s push is vital in motivating PWP to commit to a rigorous and regular exercise program.

The Byrd Center is justly proud of its sponsorship of the growing Jewish Community Center programing for PWP.

We in RSB/Tampa request equal footing.

Urgently.

Sincerely,

Gil Thelen (on behalf of RSB/Tampa adherents)

Dr. Gooch replied Oct. 24 as follows:

Mr. Thelen:

The USF Parkinson’s center has always been a strong supporter of Rock Steady Boxing, so I am confused by your email. I am copying Dr. Hauser for his reply.
Clifton Gooch MD
Dr. Gooch’s response, in its entirety:
“Mr. Thelen:

“The USF Parkinson’s center has always been a strong supporter of Rock Steady Boxing, so I am confused by your email. I am copying Dr. Hauser for his reply.
“Clifton Gooch MD”