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..

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.

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.

Testing installation and doing initial programming.

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!