Parkinson's Disease

Atlanta Airport 1, Parkie 0

Herewith the saga of one Parkie and the dreaded Atlanta airport. (Parkie, for the uninitiated, is a person with Parkinson’s disease, like me.)

 

I left a NYC business meeting last week headed for Atlanta. My Southwest flight was scheduled to arrive Atlanta 10:50 PM. It didn’t

 

I landed instead at 1:15 a.m. Had 30 minutes to make last hotel shuttle van. (To claim last room in hotel.)

 

That’s due to you, Southwest, the airline that maxed out and crashed its computer system the day previous, bringing Thursday’s customer nightmare

 

Late night, reduced schedule for airport internal subway cost me time. After subway, “sprinted” through terminal as only an exhausted Parkie can do, slowly, losing an orthotic insert for my shoe in process.

 

I was five minutes late for scheduled departure of last shuttle. But driver was still waiting. Not for me, I learned, but for a hotel employee he had taken a shine to.

 

I crept aboard van VERY slowly. Said driver asked why so difficult? Parkinson’s, I answered.

 

I placed my two small bags and myself in the front seat on the right. Floor and luggage rack on my immediate left.

 

Said female hotel employee follows me aboard, greeted by this from driver: “You are the ONLY reason I didn’t leave on time. I wanted to see you.”

 

Driver proceeds to drive to hotel, fast, very fast, as if to demonstrate his driving prowess. So fast in fact that final cloverleaf exit ramp required my very hard lean against centrifugal force.

 

Force won, hurling me to floor and then against luggage rack. (My well executed, football, Rock Steady roll to right shoulder protected against serious injury.)

 

Driver stops van and helps me off floor. I remind him I said I had PD. He says he had warned me to use seat belt (No such seat belt conversation ever happened. I was too tired to even notice belt was there.)

 

He becomes obsessive, repeatedly asking “Are you okay?” I can visualize liability cartoon-balloon above his head, saying “Lawsuit. Lawsuit. This could be bad.”

 

Aftermath:  I remain sore on upper right side of body. Otherwise OK.

 

My Parkie Pal Laura had this to say after hearing story: “Sorry about the effingerous night you had. Effingerous: Effing + dangerous.”

 

Moral of story: “Beware shuttle bus guys who lust while driving.”

 

 

 

 

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Marco Island’s Model PD Community

The PD community, I have learned, is full of extraordinary people. One is Valerie Herrero, a can-do personality who is a feverish stationary biker. She is spouse and caregiver for Gerard Herrero. I know both from the North Tampa support group and the Y cycling program for Parkies at Northdale. She radiates energy and conviviality, lighting up any space she occupies.

 

Valerie recently told me about their vacation trip to Marco Island. I was extremely impressed about their experience of life in the active Marco PD community. I asked Valerie to write about their experience. Here is the edited version of her fine account.

 

“This year, before our vacation to Marco Island, we decided to Google for Parkinson activities in the area. To my surprise, I found the Parkinson’s Association of Southwest Florida (PASFI). I was bowled over by their website. I found information about free programs and services, including social, educational and exercise.

“When we arrived, we found and experienced passionate, enthusiastic volunteers eager to make our vacation memorable.

“With open arms, they shared with us the PASFI mission, how their association got started and how they serve the Parkinson’s community with free programs and services. They invited us to attend their events and gave us information, including Parkinson’s exercise CDs to take home.

“We decided to check out the Rock Steady Boxing Program at the Marco Island YMCA. There we met Gustavo Sita, a certified Rock Steady trainer. Gustavo and other Parkies took us under their wings for two sessions.

“The prior winter, the YMCA Rock Steady Boxing program had more than 40 regulars. The YMCA is preparing to expand the program this fall.

“Another afternoon, we met Susan Branco, who conducts special therapeutic exercise programs for PASFI. Susan has developed unique strengthening programs. They combine music with easy movements using bands, balls and weights while seated or standing next to a chair.
“Again, like so many others we met in Marco, her devotion and passion for helping Parkies improve their quality of life through exercise was striking.”

Parkinson's Disease, Parkinson's exercise

Valuable New Exercise Routines

I am spending time at New Smyrna Beach this month. The vacation break, while soothing, is taking away my exercise routines at Rock Steady Boxing and interval cycling.

I received an email a few days ago that has very nicely filled my PD exercise void. It’s from Jim Stoll, a man I don’t know except through email correspondence. It lays out an exercise program related to the “Big Program” I took at Florida Hospital-Tampa shortly after I was diagnosed in 2014. It’s named PWR! (Details to come.)

First, about Jim Stoll. He describes himself as a 69-year-old man with advanced PD. He continues: “I was diagnosed … in 1970 after a carbon monoxide poisoning incident. Things did not get real bad till 2014, 44 years later. Now my body just quits listening to my signals. I also have sacroiliitis which makes walking of more the a few hundred feet quite painful.

“I had MoveBig therapy once about a year ago, and it helped some. Then I learned about Parkinson’s Wellness recovery PWR!, which, from what I understand, is MoveBig version 2.

“I am very excited about PWR! It implements research-based neuroplasticity-principled programming in rehab and fitness settings

“PWR! is centered around four moves –up, rock, twist and step –and is done in five positions prone (lying face down), supine (lying face up), sitting, standing and all fours.

“I have been doing the PWR! moves in the supine position for about a month. Both my wife and I have noticed a definite improvement in my ability to walk.”

Jim provides YouTube URLs that demonstrate the moves. Some of them are part of of the Rock Steady floor routines I know very well.

RESULTS BASED: PWR! Training – Unfreezing for an individual with Parkinson disease with severe freezing: https://www.youtube.com/watch?v=bz_dQnvuNfY
A LOOK AT THE PWR POSITIONS
PWR! Moves Positions – Standing https://www.youtube.com/watch?v=Y6Wtd13lwrc
PWR! Moves Positions – Sitting https://www.youtube.com/watch?v=TDBVDCkkxV0
PWR! Moves Positions – All 4’s https://www.youtube.com/watch?v=oXUzOmfPwD8
PWR! Moves Positions – Supine https://www.youtube.com/watch?v=UOVcVPUGEHM
PWR! Moves Positions – Prone https://www.youtube.com/watch?v=ZFhk73ydmto
PWR Moves! Let’s Get Moving! (group exercise session) https://www.youtube.com/watch?v=yPspiGqHinA

Introductory Breath Flow for Parkinson’s Wellness Recovery (PWR!) https://www.youtube.com/watch?v=POiAkJeFSRs
AN EXPLANATION OF THE PWR PROGRAM
PWR! Gym Social Week 1 – Em-PWR!-ment https://www.youtube.com/watch?v=H2Pcbfqt7Sc
PWR! Gym Social Week 2 – PWR! Nutrition https://www.youtube.com/watch?v=6Amei5OkK1I
PWR! Gym Social Week 3 – PWR! Teamwork https://www.youtube.com/watch?v=GhBIXwrQ4eU
PWR! Gym Social Week 4 – Optimizing Your Meds with PWR! https://www.youtube.com/watch?v=B6ZlIKaBQHo
PWR! Gym Social Week 5 – PD Specific Exercise https://www.youtube.com/watch?v=yMsUKsl4G_M
PWR! Gym Social Week 6 – Big, Fast, PWR!-ful https://www.youtube.com/watch?v=SdrPPUFXooU
PWR! Gym Social Week 7 – HOW to Exercise with PWR! https://www.youtube.com/watch?v=6w6a3SBuTVo
PWR! Gym Social Week 8 – PWR!Moves Intro https://www.youtube.com/watch?v=r2xDr1AhaeU
PWR! Gym Social Week 9 – PWR! Up with Emily https://www.youtube.com/watch?v=r2xDr1AhaeU
PWR! Gym Social Week 10 – PWR! Rock with Jennifer https://www.youtube.com/watch?v=41mH1dCZ9Pk
PWR! Gym Social Week 11 – PWR! Twist with Emily https://www.youtube.com/watch?v=GELblae395s
PWR! Gym Social Week 12 – PWR! & Brian Grant Foundation’ Power Through Project’ Trailer https://www.youtube.com/watch?v=DEOGY0-9xvk
PWR! Gym Social Week 13 – PWR!Step with Jennifer https://www.youtube.com/watch?v=oPxIdrMq4Ik