Friday, March 21, 2014

I Tremble at the Thought . . .

We who have Parkinsons Disease refer to each day as a "Good day" or a "Bad day" depending on the whim of our bodies, the phase if the moon, and whether or not Golden Crackers won in the 4th at Hialeah...

We don't know whether the day will be a productive one or a bust.

I am now the possessor of a new machine to help those with Parkinsons and Familial Tremor and other motion disorders. It is called a "Deep Brain Stimulator" (DBS) and it bids fair to revolutionize the approach to the treatment of this incurable and progressive set of diseases we call Parkinsonism..

I have possessed this machine for less than 48 hours, and already it has changed my life.

The installation of the unit took 3 stages spaced over about 2 months..

STAGE ONE
Surgical implantation of the probe within the skull and within the brain but staying outside the membranes of the brain so as not to cause a stroke.

We had an interesting development occur during this stage.

I had been given an anesthetic which was reputed to allow the patient to be instantaneously awakened  if necessary.  Came the time the Doctor needed my input, I was given the "antidote" and lo and behold...I didn't awaken.  I was given another shot of the antidote and...I didn't awaken.  They were getting nervous, and people were starting to crowd into the OR to be of help.  They tried a third time, and I came awake.  Phew!  We did the usual PD repertoire of gestures and I went back to sleep.

But they didn't know the half of it...What actually happened was that I was in my other guise of secret agent, and I was battling my way through the bush in order to connect up with another agent to whom I would sign (in gestures) the intelligence I had collected.  Finally, after struggling through thick swampy ground I was able to see the other agent, approach her, and sign the data to her.  After she left, I was able to get some needed sleep...

Isn't it wonderful  what the brain can do to make the most of a potentially bad situation.  And the sets were really not bad...sorry Doctors, but you will have to wait for the rerun on Netflix.

STAGE TWO
The Docs must run a conduit of sorts from the side of the skull, down to the collarbone, and under the skin to the back of the breast. At this area, above the bra line, are the power pack and processor, called a "Generator". which are implanted just under the skin.

STAGE THREE
Testing installation and doing initial programming.

SO, HOW DOES IT WORK?
Inside the skull, thereis a probe having 4 transmitters and 4 times as many receivers.  Through these sensors the Doctor has control of the tansmitters on an individal basis.

There is a remote contol, similar to that found on any home theatre setup but far less daunting. The remote is pressed against the Generator (with or without clothing on) and the Send button pushed, and it turns on.

The Doctor supervising the installation has a remote of much greater capacity and capability.

The Patient (me!) does not take any of her Parkinsons medicines for 12 hours before the session. I was pretty miserable by the time I got to see the good Doctor Revuelta. I was shaking like a leaf.  My right foot lurch and shook so much that I could barely shuffle/walk down the corridor.

He turned on the units, arranged the external antennae, then, using his remote, he began to apply voltage in a simple manner. At about 1 volt the general shaking subsided, and at about 2 volts the leg suddenly stoped shaking! OMG. Just like that. I was nearly in tears.

We took about 1 1/2 hours to check through the 4 channels of the unit and see just how the basic settings affected the tremor, and what side effects there might be. Fortunately, I had only two settings which produced a physical reaction which I found unpleasant. Then he got to the creative part, where he combined the signals and changed their voltage, their signal strength, their band width, their frequency, and other arcane electronic things, all based on my reactions to what he did...  It was a musical performance with the Doctor conducting.

He explained that through the receptors on the probes, he could focus in on a given brain cell anda actually listen to it working. Can you imagine? Listening to brain cells individually.

He then was going to teach me to use my remote, but one thing got in the way. I said "Doc, I have to pee." He said "Wait", grabbed his remote, pressed it against my chest and clicked the button. He then said "Go..."

I took about two lurching, unsteady, agonizing steps and suddenly my legs were free, there was NO tremor, and I could walk  totally unaided and almost normally to the bathroom.  I broke down and cried.

That was my first setting.  I woud have two: one for stressful times, and another for the rest of the time.

When we finished doing everything he said that it was a thrill seeing each person react to the machine and what it does.

And to what it would do...  Believe me, it changes your life.

I have rediscovered my world in those 48+ hours.  It is once again bright, and focused, and my thoughts are clearer and more lucid.  And those strange little people whom I thought were there but really weren't have begun to take their leave.

This is a real blessing, and I am fortunate indeed to have got it through the work of the Medical University of SC Hospital, and their newly-formed Department of Motion Disorders. I received the ministrations of Dr. Gonzalo Javier Revuelta, DO, the attending physician and programming guru, Dr. Istven Takacs MD, the neurosurgeon, and Nurse Practitioner Amy DeLambbo who kept it all going. They, and the rest of their team all performed beautifully and with great professionalism.

This whole enterprise took close to three years.  A short time relatively, but a long time for a miracle to occur.

For about 18 years previous to that I was totally under the care of one Neurologist.  His conservative but wise decisions regarding my therapy, made it possible for me to continue my life's work throughout this stressful time.  I give you Dr. David Bachman, MD.

Thanks are due to my many friends whose constant emails and phone calls have given me support through their good thoughts and prayers.

I have been greatly blessed by Jehovah God, and give Him the credit for ultimately guiding me in the way I should go.

'Jus doin' the Charleston!

Olivia

Friday, March 25, 2011

WHEN DO WE DIE?

I was chatting online with Lowcountry author Richard Cote about what he terms "gentle death". This was in response to his Facebook posting about the assisted death of well-known right-to-die activist Nan Maitland.

Since then I have had a chance to think more about this subject, and have come to the conclusion that I am definitely ambivolent about it at this point in my life.

Why?

Because I like to watch.

I like to watch events unfold. I like to watch the seasons change. I like to watch politicians continually make fools of themselves. I like to watch the light change as I drive from Charleston to Florida. I like to watch the tides rise and fall. I like to watch my friends having a good time at a party. I like to watch the moon rise above the treeline. I like to watch the Milky Way slide smoothly across the clear Winter sky.

And I haven't even got started.

I said to Richard, "I believe that we all have the responsibility to live our lives to the absolute fullest. Anything less is perhaps one of the deadliest sins. I hear people saying how bored they are... how can anyone be bored with a whole universe just sitting there waiting to be explored?"
And what have I found in my explorations?

For one thing, I have found that one can avoid getting bored in a Doctor's waiting room, or in a gov'mint office, or in the auto salesmans' Closing Room (you know...the one with no inside handle on the door...). Simply put: watch people.

I like to watch people. They are inscrutable, unpredictable, generally entertaining entities, However, people are at their most uninteresting if there is a television in the room. Go into a restaurant with televisions sprouting from the crown moulding like an insidious vine. See the people stare blankly at the screen, not paying any attention to their friends, their servers, or their lives.

So what is the answer to the question I posed in the title?

The answer is that we die when we give up living. Some people do it by never looking around themselves. Others entertain themselves to death to the background of a bluish flickering screen. Some die in a cubicle in an office building, but they still manage to get up and go home at five o'clock.

And a few live their lives as though they will never die. They tend to smile a lot.

I smile a lot, even when the going gets tough. After all, when the going gets tough, the tough go shopping. But that is another blog in itself...

Here are a few pithy quotations I shall leave you to ponder.


"We spend too much time living in the ‘what if’ and need to learn to live in the ‘what is.’" - Rev. Leroy Allison


"A bird does not sing because it has an answer; it sings because it has a song." - Chinese proverb


"There is the risk you cannot afford to take and there is the risk you cannot afford not to take." - Peter Drucker


"Excessive self-esteem is the greatest rein on genius." - French organist Marcel Dupre


"They can't say 'Yes' unless you ask them..." - moi


Now go out and live...there will be time enough to die in a minute, or an hour, or a day, or a lifetime...


Olivia

Jus' doin' the Charleston...


PS - Look for Richard Cote's new book "In Search of Gentle Death", due to be published later this year.

Tuesday, February 15, 2011

Some personal thoughts after Valentine's Day

It was interesting watching my FBFriends yesterday...

There was not a great deal of heart-on-sleeve emotionalism.

- A few couples made understated comment about their relationship.

- A few sent the to-them obligatory blanket Happy Valentine's Day message: a Loretta Young style sweep-down-the-circular-staircase-and-MWAH sort of gesture. (Gawd, I WANTED that dress...)

- One or two were almost belligerent about their for-the-moment partner.

- Most went about their lives without comment.

Does that mean we didn't have love for our friends? Or they for us? Not at all. I count it to be a good Valentine's day if I dont get any special cards,letters, or FB messages. Yesterday was very good.

I went about my day's living uncomplicated by mass-media guilt or hysteria.

There are a few people out there who know that they are loved, not just on 14 February, but on 14 March and 14 April, too. Without cavil, without fail. And their love travels back to me every day, and I am replete.

Olivia

Jus' doin' the Charleston

Thursday, February 10, 2011

What are those buildings?

A few people who don't live in Charleston (I won't embarrass them by naming them...) have asked what all the buildings are at the top of this page...

Charleston is known as "The Holy City" because of the large number of churches located in the city. It is also known for the number of world-class concert pipe organs housed in many of those churches.

So, I will identify them...from left to right and coincidentally downtown to uptown...

First Baptist Church...............................................[Wicks Organ]
First (Scots) Presbyterian Church.......................[Ontko Organ]
St. Michaels Church..................[Ontko/Kenneth Jones Organ]
Cathedral of St. John the Baptist (Catholic)...[Bedient Organ]
The French Huguenot Church.................[Henry Erben Organ]
The Unitarian Church ....................................[Johannus Organ]
St. Johns Lutheran Church................................[Schantz Organ]
St. Mary's Catholic Church.................................[Jardine Organ]
Kahal Kadosh Beth Elohim..................................[Ontko Organ]
Grace Episcopal Church.......................................[Reuter Organ]
St. Matthews Lutheran Church...........................[Austin Organ]
Cathedral of St.Luke & St. Paul (Episcopal).........[Kney Organ]

This list comprises about 20% of the churches on the lower peninsula. With all those pipe organs it can get a tad noisy downtown on Sunday mornings, but God does not appear to mind...

Olivia

'Jus doin' the Charleston

Overheard on Facebook...

Victor on Facebook remarked:

"...honestly, i don't think government is necessary.the rich should be the ones to dole out the cash to help the poor."

‎@Victor from me -

"Thats how it used to be. The rich had big homes, private railway cars, held big and lavish parties, etc. But it was understood that they also had obligations.

A good example is Andrew Carnegie. He was a tyrant when it came to business. He is reputed to have said "Power is my ability to say 'No' to you and make it stick."

He made lots of money.

He also donated entire libraries to communities which couldn't afford them, and pipe organs to churches and municipal auditoria.

Nobody made him do it - it came with the territory and was expected.

But anymore the rich are interested in doing one thing: getting richer. They have no sense of social obligation.

Is it so surprising that the government has taken over the charitable work once done by millionaires? But they do it to curry favor with the masses and get re-elected by virtue of how many promises they can make of a chicken in every pot (except mine and other vegetarians) and two cars in every garage (are we supposed to stack them?), only to break them after the election.

People have come to expect government charity as their due. (They dont call those programs 'entitlements' for nothing...)

There are going to be abuses in all levels of society; we the people are the ones who must ultimately decide which abuses we will tolerate. And which freedoms we may be forced to give up as a result.

I think we need a government which will deliver the mail on time and defend our interests and our borders, leaving the charitable work to the private sector. And if that counts for having a duplex in Fool's Paradise, well, call the moving company...

Olivia

Jus' doin' the Charleston

Tuesday, February 1, 2011

My Country...and yours

I had a rather nice exchange of emails with my friend Johanna the other day. I had just published the first episode of this blog, and received this email:

"Thank you for the invitation (I joined), funny that your blog was about the national anthem since today I am going to take the test to become an American citizen!"

I knew she of everyone I know would pass he test, so I jumped the gun a bit in saying:

"Welcome to citizenship in our strange but great country. I am sure you will pass the test with high marks, but more importantly than that, you will have done something that only a small percentage of our citizenry does in their lifetimes: learn about our history and our governmental forms.

"It took me until middle-age before I learned about my country and the strengths my grandparents brought to this country when they fled Hitler's takeover of Czechoslovakia. But I am glad I did, for despite its shortcomings, I am proud to be an American - and likewise will be proud to welcome you as a new citizen.

"God bless you and your family..."

She replied:

"Such sweet and heartfelt words of welcome. I thank you.

"Your story is yet another reminder of how the fate of one generation is forever altered due to historic events.

"I went in today expecting only to take the test but ended up being sworn in today as well so as of this afternoon I am an American citizen! I expected to walk out of there without my (Scandinavian) accent but I guess I'm stuck with that ☺

"It won't be long before I won't remember anymore how many representatives there are or how many amendments the constitution has, I will probably also soon forget the 5 US territories or who was the US president during world war one, but as of right now I actually know all the answers to all the 100 questions on the test that I was studying for to become a citizen. I enjoyed learning it all, and I will enjoy being an American from this day forward."

Do you enjoy being an American? Are you proud? I hope so...

Our country has many shortcomings, it is true, but yet it remains the "more perfect form of government" envisioned by the writers of our Constitution. They sought to give us a living document, and succeeded!

I have personally travelled the breadth of our continent, from sea to sea. I have seen the purple mountains and the amber waves. I have stood on Omaha Beach in France among the graves of our boys laid to rest in a piece of the USA facing the English Channel. I have entered a village in Normandy which commemorates D-Day with banners which say "We welcome our liberators" even more than 60 years later...

There must be something right with the USA to inspire people even at this time to seek their fortune, leaving home and kindred for the promises of the New World.

So again I say to Johanna, Welcome! Share with us your talents as we will share with you the greatness of our diversity.

Olivia
'Jus doin' the Charleston...


Thursday, January 27, 2011

Where did you get that title?

A number of people have asked me that...

I stole it, of course! And from a first-class source. (of course)

It comes from the mind and pen of Frank Gilbreth, who for more than 40 years wrote a column of that name under the pseudonym of "Ashley Cooper". (Note that his pen-name is taken from the names of the two rivers which converge in Charleston Harbor to form the Atlantic Ocean...)

I quote a column written by one of his colleagues hours after his death.

I am humbled by his writing genius, and hope to live up to so worthy a mentor.

Olivia
Jus' doin' the Charleston

********

Why Charleston will remember Ashley Cooper
Tuesday, February 20, 2001
by Elsa McDowell

Years ago, Lord Ashley Cooper started preparing his own epitaph:
"Although he lived in the twentieth century, he didn't have anything to do with the invention of the atomic bomb, internal combustion engine, TV commercial, rock music or non-objective art."

We all smiled because, of course, Ashley Cooper will be remembered for what he did, not what he didn't do.

He made us smile. He made us think. He made us angry - but never for long. In his column here, beloved by readers, he would make fun of tourists one day and make fun of native Charlestonians the next.

He would recount colorful stories of old Charleston one day and of present-day Charleston the next.

He delighted us with comical slice-of-life vignettes, and he challenged us with prickly community issues.

Ashley Cooper earned the respect and affection of thousands of readers, and when he retired from column-writing in 1993, they grieved. Many are still grieving.

EXCEPTIONAL MAN


Ashley Cooper, of course, was the pen name of Frank Gilbreth Jr., who died Sunday.

This is the spot in the paper that Mr. Gilbreth filled for more than 40 years. It seems a fitting place to pay tribute to him. And it seems the best way to pay tribute to a masterful columnist is in his own words.

• "I don't know about other Charlestonians, but the way I tell summer from winter is that in winter we get lots of Lincolns, Cadillacs and stuffed shirts, and in summer get lots of Chevrolets, Fords and stuffed shorts."

• "What we really need in Charleston are tourists who will send their money here but stay home themselves."

ON CHARLESTON
• "In a hick town they take up the sidewalks at night. In Charleston, the sidewalks are in such bad shape that if you took them up you'd never get them back down again."

• "Who was it who said that Charleston - our Holy City - was like a lesson in verbs? Yes, you discover the present tense and the past perfect."

• "A correspondent advises Lord Ashley never to ask anyone where he is from. 'If he is from Charleston, he will soon announce that fact,' alleges my correspondent. 'If he is not from Charleston, there is no need to embarrass him.' "

• "They say we in Charleston spend more money on liquor than we do on education. But, my goodness, what you can learn at a Charleston cocktail party!"

• "What is full of slime and hooey,
Makes the stomach loop-the-loop?
What is slippery and gluey?
Greasy, gooey OKRA SOUP."

• He stirred up heated emotions over the Confederate flag (which he thought didn't belong over the Statehouse); over "y'all" and "youze guys;" and over historic preservation.

He wrote about cockroaches and Gullah, about George Gershwin and palmettos, about slumlords and bike paths.

His words remind us why we love Charleston and why we will long remember Frank Gilbreth, who loved it too.