Monday, April 16, 2018

Living Well with Parkinson's

HOW I LIVE WELL WITH PARKINSON’S 
___
By Garry Ballenger 

What to do about Parkinson's, the big picture.

Those of us with Parkinson’s are fortunate to have a world of people willing to help. The big donors, Michael J Fox, Davis Phinney, The Gates Foundation, The National Institutes of Health and other national Parkie organizations are raising money to support the search for a cure.  There are also local organizations. The Parkinson Association of the Carolina’s (PAC) is the local organization where I live. PAC is here to support people who have Parkinson's now. There is a real tension between these two goals.  Both are the right answer.  What's important is that we pick a path and pursue it deliberately, as if we were doing it on purpose. Given the time it takes to get treatment from basic research to FDA approved therapy I am unlikely to survive long enough to benefit from the cutting edge therapies.  What I can do is have a great life living well with Parkinson's taking advantage of all that the PAC can help me with.

My Adventure

I was diagnosed with Parkinson’s in 1999. That was 18 years ago.  I was 44 years old. Like most of us I was misdiagnosed for a while. I had acquired a resting non dominant tremor.  My tremor was diagnosed as a benign familial tremor. Parkinson's being Parkinson’s new symptoms appeared.  When the stiffness in my right hand reached the point where I could no longer type more than 3 letters I was referred to a neurologist.  It took my first neurologist ( I have had 5 neurologists and 1 neurosurgeon) all of 5 minutes to tell me that I had Parkinson's. The question that immediately came to mind is what do I do now.
What do I do now. I could go home and sit on my couch.  I had always lived an active life so a big change to a sedentary lifestyle just did not feel right.  There were things I wanted to do that I did not know I wanted to do.  Also I was now living with a degenerative neurological disease that I knew nothing about. What to do. My parents had raised me to be relentlessly, obnoxiously positive.  So I made a decision to do the most positive thing I could think of. I would do everything, go everywhere and read anything I could find about Parkinson’s.  Sounds like a good disease management plan doesn’t it. The way it would work out, I would not have undertaken many of the parts of my adventure without the impetus Parkinson’s gave me to get out and go.
I had a rough idea of a plan but were there any limitations?  My 2nd neurologist told me I could expect 10 good years.    The interesting point here is that all my neurologists told me the same thing.  Today I still have an expectation of 10 good years.  I have  a rolling 10 year window of good years.  Basically I could do whatever I felt up to.  Now what I needed was good mid life crisis. My first effort was to buy a car I had always wanted.  I found it for sale on the internet.  A red 1968 Triumph GT6.  I flew to New York with a cashiers check and would have driven it home to North Carolina but New York's  Dept of Motor vehicles wanted my seller to have a little more paperwork.  The car was delivered to my house on a car transport.  That was fun for a while but there seemed a little more to do.  A friend and I got into a conversation about motorcycles.  The next thing I know I was on a bus to West Virginia to buy a Honda VTX 1800.  What do you do with a big motorcycle?  You take a big trip.  I road the VTX from Charlotte to Eugene, OR and back.  I was camping so I rode from KOA to KOA.  It was a great trip.  It was one of those things you wait for the right time to go and , but for Parkinson’s the right day would never come.
There were more adventures.  I acquired a Deep Brain Stimulator. I got married to wonderful person. A trip to Scotland for a World Parkinson Congress where I managed to squeeze in a round of golf at St. Andrews deserves a mention.  As does a drive from Charlotte to Montreal in a convertible Jaguar XJS to attend a World Parkinson Congress in 2013. The World Parkinson Congress in Portland was another great trip.  Let's look at what I am doing now to keep on living well.

Since I have stayed true to my original goal to do everything, I am busy.  I open the YMCA Tuesday, Wednesday and Thursday because I have to get up early and interact with a large group of people. I lead a support group because I was asked to and because it forces me to speak in front of a crowd once a month.  Monday is Golf and Deep Stretch Yoga.  Tuesday is a Parkinson’s Circuit workout class as part of a Renew program at the Y, Power Vinyasa Yoga and a Vipassana Meditation class. Wednesday is another Vipassana Meditation class.  Thursday is another renew class, this time it is a TRX class.  Friday is Golf.  Saturday is Chair Yoga for people with Parkinson's .  Sunday is a day off.  Yes I am busy and it is all part of my strategy of managing Parkinson’s by doing everything. As near as I can tell it is working.

Sunday, April 15, 2018

Parkinson's haiku

Spring sun shines brightly
resist Parkinson’s darkness 
I am still standing

Friday, February 10, 2017

Daddyweather's Things That Are Never True.

Daddyweather's Things That Are NEVER True. 1. Anything contained in an unsolicited e-mail. Spam always lies. 2. Anything one school child says to another that seems amazing. It might be amazing, but it is not true . . . ever. 3. Any bit of wisdom attributed to the mysterious "They" eg "They say that . . ." "They" do not exist and therefore never say anything. 4. Anything said on the phone concerning any person who is not involved in the phone call. Gossip is always false 5. The statement by anyone caught doing anything that it was the "First Time." No one is ever caught doing anything for the first time. They get caught when they become careless and confident that they will not get caught and that takes a few efforts. 6. The statement by anyone caught with anything that it is "Not mine, I was just holding it." Of course it is yours. If it is important enough to be against some rule or law and it was yours you wouldn't let anyone else hold it for you either. 7. A statement of his age by any man who wants you to find him attractive. Look at him. If he looks under 25 he is somewhere between 15 and 19. If he looks over 35 he is at least 50. (The key to this one, and #8, is the intent of the statement and your own weakness at the moment. If you do not know when you are deceiving yourself and it never occurs to you to wonder why people say the things they do, I can't help you. ) 8. A statement of her age by any woman wants you to find her attractive. Look at her. If she looks 16 she is somewhere between 12 and 14, if she looks over 21 she is at least 35. 9. The statement that "I am doing this for the principal, not the money." If there was no money you wouldn't be doing it at all. 10. Anything said by anyone about their ex-spouse. They were never that good and they will never be that bad. 11. Anything discovered solely through research on the internet. 12. The results of any survey that supports the position of the person who paid for it. Actually, since all surveys support the position of the people who paid for them you can expand this one and just say "The results of any survey"

Saturday, March 20, 2010

My Skin is Old

My skin is old
I can see it in the blotchy reds and yellows
Wasn't I once all pink and tan
I can feel it in the cracks and lumps
Uneven and rough like a salvaged brick
Rough and hard to the eyes and the hands
Still strong, just old.
Calling out to me, Old, Old, Old
Me, the eye that looks out from behind my eyes
My mind has not changed, it is still new with each day
Spring has come again as it does
The sights and the sounds are alive, and young
All part of me and I with it as it always has been
How would I know if life passed me by
My mind feels and sees the age in my skin
Am I really that old
How would I sense the age in my brain
The age in me
Am I old?

Sunday, November 22, 2009

What kind of fool are you . . . today?

A winner from today's New York Times:

Three Kinds of Fool

Writing for the journal In Character, Michael Dirda, Washington Post book columnist, waxes cultural on the three types of fool -- real, professional or unsuspecting:

Real Fools are the innocents, the simpletons, the idiot savants and “naturals” who react to situations and people with an Aspergian lack of restraint or decorum. They speak their unmediated minds, and great truths sometimes emerge, as “out of the mouths of babes.” ... Forrest Gump is our great modern exemplar of this kind of fool. Heaven looks out for such as these.

Professional Fools include court jesters, clowns, toadies, con artists, and a whole range of yes-men. By pretending to be stupid or servile, the Professional Fool coolly aims to reinforce his client’s conviction of his own obvious superiority. ... In the film “The Usual Suspects,” Kevin Spacey is a more complex example: Hunched and crippled (as were many professional court jesters), he’s slightly pitied by the tough and obviously much smarter people all around him. But Verbal Kint is far more than the “talkative child” that his name suggests.

As for Unsuspecting Fools, they are essentially everyone else in the world, starting with you and me. Everybody plays the fool sometimes; there’s no exception to the rule. ... Pride goeth before a fall. In tragic vein, Oedipus and Lear are Unsuspecting Fools.

Sunday, September 20, 2009

Last Words

Today's New York Times, Sunday, September 20, 2009, included a collection of the last words spoken by inmates in the Texas Correctional System just before they were executed. I went to the Texas Department of Criminal Justice web site and found that Texas has executed 440 people since 1982. Most of them have last words attributed to them. You can find the full list at

http://www.tdcj.state.tx.us/stat/executedoffenders.htm.

The edited list from the Times follows.

What do you think?

Last Words
NYTimes.com
September 20, 2009
OP-ED CONTRIBUTOR

By CLAIRE CAMERON
Last week, reports of executions — one postponed in Ohio, one carried out in Texas — punctuated the news more frequently than usual. These reports prompted me to reflect on an archive of executed prisoners’ last words I found on the Texas Department of Criminal Justice Web site while researching parole terms. The archive’s earliest entry dates from Dec. 7, 1982; the most recent was added after Stephen Moody was executed on Wednesday by lethal injection for murder.
What follows are quotations taken from inmates’ last statements in Texas. The statements, delivered before family members, relatives of victims, friends and the press, are compiled out of chronological order.
— CLAIRE CAMERON, the author of “The Line Painter”

Go ahead?
Nothing I can say can change the past.
I done lost my voice.
I would like to say goodbye.
My heart goes is going ba bump ba bump ba bump.
Is the mike on?
I don’t have anything to say. I am just sorry about what I did.
I am nervous and it is hard to put my thoughts together. Sometimes you don’t know what to say.
Man, there is a lot of people there.
I have come here today to die, not make speeches.
Where’s Mr. Marino’s mother? Did you get my letter?
I want to ask if it is in your heart to forgive me. You don’t have to.
I wish I could die more than once to tell you how sorry I am.
Could you please tell that lady right there — can I see her? She is not looking at me — I want you to understand something, hold no animosity toward me. I want you to understand. Please forgive me.
I don’t think the world will be a better or safer place without me.
I am sorry.
I want to tell my mom that I love her.
I caused her so much pain and my family and stuff. I hurt for the fact that they are going to be hurting.
I am taking it like a man.
Kick the tires and light the fire. I am going home.
They may execute me but they can’t punish me because they can’t execute an innocent man.
I couldn’t do a life sentence.
I said I was going to tell a joke. Death has set me free. That’s the biggest joke.
To my sweet Claudia, I love you.
Cathy, you know I never meant to hurt you.
I love you, Irene.
Let my son know I love him.
Tell everyone I got full on chicken and pork chops.
I appreciate the hospitality that you guys have shown me and the respect, and the last meal was really good.
The reason it took them so long is because they couldn’t find a vein. You know how I hate needles. ... Tell the guys on Death Row that I’m not wearing a diaper.
Lord, I lift your name on high.
From Allah we came and to Allah we shall return.
For everybody incarcerated, keep your heads up.
Death row is full of isolated hearts and suppressed minds.
Mistakes are made, but with God all things are possible.
I am responsible for them losing their mother, their father and their grandmother. I never meant for them to be taken. I am sorry for what I did.
I can’t take it back.
Lord Jesus forgive of my sins. Please forgive me for the sins that I can remember.
All my life I have been locked up.
Give me my rights. Give me my rights. Give me my rights. Give me my life back.
I am tired.
I deserve this.
A life for a life.
It’s my hour. It’s my hour.
I’m ready, Warden.

Sunday, August 23, 2009

Connecting Nature's Dots

Thomas L. Friedman wrote the following piece for today's (Sunday, August 23, 2009) New York Times. He is right on point. The essence of human intelligence is making connections, finding analogies, between things which on the surface appear to be unrelated. To deal with climate change, poverty and food security we may have to get smarter.

Here is the article. See what you think.

August 23, 2009
Op-Ed Columnist
Connecting Nature’s Dots
By THOMAS L. FRIEDMAN

Jao Flats, Botswana

Who knew that deep in Botswana’s Okavango Delta, where there are no paved roads, phones or TVs, you could find the morning paper waiting for you every day outside your tent, with the latest news, weather and sports? Who knew?

True, this is no ordinary journal. The newspaper here on the Jao Flats of the northwest Okavango flood plain is published on the roads — literally. The wetlands are bisected by hippo trails and narrow roads made from pure white Kalahari Desert sand. And every morning, when you set out to investigate the wilderness, it is not uncommon for a guide to lean out of his jeep, study the animal and insect tracks, and pronounce that he’s “reading the morning news.”

We were lucky to be accompanied by Map Ives — the 54-year-old director of sustainability for Wilderness Safaris, which supports ecotourism in Botswana — and it was fascinating to watch him read Mother Nature’s hieroglyphics.

This day’s “news,” Ives explained, studying a stretch of road, was that some lions had run very quickly through here, which he could tell by the abnormal depth of, and distance between, their paw prints. They were in stride. The “weather” was windy coming out of the east, he added, pointing to which side of the paw prints had been lightly dusted away. Flood waters remained high this morning, because the nearby hyena tracks were followed by little indentations — splashes of water that had come off their paws. Today’s “sports”? Well, over here — the hyenas were dragging a “kill,” probably a small antelope or steinbok, which is very obvious from the smooth foot-wide path in the sand that ran some 50 yards into the bushes. Every mile you can read a different paper.

It is mentally exhausting hanging with Ives, who was raised on the edge of the Okavango Delta. He points out the connections, and all the free services nature provides, every two seconds: Plants clean the air; the papyrus and reeds filter the water. Palm trees are growing on a mound originally built by termites. Yes, thank God for termites. All of the raised islands of green in the delta were started by them. The termites keep their mounds warm. This attracts animals whose dung brings seeds and fertilizer that sprout trees, making bigger islands. Ives will be talking to you about zebras and suddenly a bird will zip by — “greater blue-eyed starling,” he’ll blurt out in midsentence, and then go back to zebras.

“If you spend enough time in nature and allow yourself to slow down sufficiently to let your senses work, then through exposure and practice, you will start to sense the meanings in the sand, the grasses, the bushes, the trees, the movement of the breezes, the thickness of the air, the sounds of the creatures and the habits of the animals with which you are sharing that space,” said Ives. Humans were actually wired to do this a long time ago.

Unfortunately, he added, “the speed at which humans have improved technology since the Industrial Revolution has attracted so many people to towns and cities and provided them with ‘processed’ natural resources” that our innate ability to make all these connections “may be disappearing as fast as biodiversity.”

Which leads to the point of this column. We’re trying to deal with a whole array of integrated problems — climate change, energy, biodiversity loss, poverty alleviation and the need to grow enough food to feed the planet — separately. The poverty fighters resent the climate-change folks; climate folks hold summits without reference to biodiversity; the food advocates resist the biodiversity protectors.

They all need to go on safari together.

“We need to stop thinking about these issues in isolation — each with its own champion, constituency and agenda — and deal with them in an integrated way, the way they actually occur on the ground,” argued Glenn Prickett, senior vice president with Conservation International. “We tend to think about climate change as just an energy issue, but it’s also about land use: one-third of greenhouse gas emissions come from tropical deforestation and agriculture. So we need to preserve forests and other ecosystems to solve climate change, not only to save species.”

But we also need to double food production to feed a growing population. “So we’ll need to do that without clearing more forests and draining more wetlands, which means farmers will need new technologies and practices to grow more food on the same land they use today — with less water,” he added. “Healthy forests, wetlands and grasslands not only preserve biodiversity and store carbon, they also help buffer the impacts of climate change. So our success in tackling climate change, poverty, food security and biodiversity loss will depend on finding integrated solutions from the land.”

In short — and as any reader of the Okavango daily papers will tell you — we need to make sure that our policy solutions are as integrated as nature itself. Today, they are not.