LISTSERV 16.0 - PARKINSN Archives

Speech to Parkinson’s Mona Vale

April 1998

by Barry Black

POB 822

Mona Vale

2103

Background

I was diagnosed with Parkinson’s in my early 30’s and for the first 10 years it was not really a major problem. My early symptoms were my right arm having sensations, my arm not swinging and my inability to write. During this time I was taking Sinemet and I managed to work at my job till age 43. During the next 10 years my symptoms increased with the most devastating symptom being my balance and my falling down 20 times per day. The medication that was used during this time was basically Sinemet and it was increased from 5 units to 9 units per day plus additional medications.

Qualifications

As best as I can understand it ,the minimum qualifications for the operation are a young age, good general health, a response to the drugs especially Sinemet and the ability to pay for the operation which by my estimates cost about 35,000. If you belong to medical fund with full benefits you should have most of this paid for you.

Operation

The operation itself lasts for 12 hours and you are awake and can hear all the discussions in the operating theatre. The night before you are required to sign a document releasing the doctors from liability in case something goes wrong. The chances of fatal failure are 1 in a 100. You must be mentally ready for the operation weeks in advance.

The first part of the operation is to have your head put in clamp and the clamp locked to the bed head. You are then put into a scanning machine for 2 hours. I was told that this could be very claustrophobic and so to help myself I kept my eyes closed once I entered the room and during the entire 2 hours. I felt that I had fallen asleep even though there was a constant sound of jack hammering. I was told that I could get a sore back from lying motionless for 12 hours .I solved this problem by putting pillows under my knees and getting my neck solidly supported. Needless to say you can not go to the toilet. I did not drink anything for 12 hours before the operation. In this operation you are not allowed to take any medication for 12 hours before the operation or during it.

I experienced no pain in the operation and no other difficulties. The reason my head was put in a clamp was so that the neuro surgeons could operate using the 3 dimensional picture of my brain from the scanner. The neuro surgeons inserted a test electrode in the brain and drop it down to different target points where the neurologist tests the desirability of the insertion of the electrode at the differing positions. The electrode is inserted and tested at the target plus 1mm, plus 2mm, plus 3mm, minus 1mm and at target. The best position is then selected for the patient and a permanent electrode is cemented in place. Once this is completed the same procedure is done for the other side.

Results

The immediate results were the inability to speak very clearly and increase in my mobility. The next day I felt alert and awake and no side effects other then the inability to put two words together ( only some patients experience this). I was eating and sitting up in bed satisfactory.

One week later they did the operation to implant the pulse generators in my chest .This part of the operation was done under anaesthetic (for about one hour ) and this there was pain for about one week. One week later (when the pulse generators are connected to the electrodes ) the neurologist does tests with his computer.

I found that the first program that was put into me lasted for four days and then I deteriorated. The second program lasted for about four days and also deteriorated. I was released from hospital after a total of 3 weeks and required the use my walker and cane many hours of the day.

At my one month check up I was given a new program but still required the use of my cane. At my 3 month check up, the next program variation felt great and I was good for couple of weeks then deteriorated .During all these months I continued to take medication at a lesser rate then before and reduced the use of my cane. At four months I was receiving electric shocks down my arm and the program was altered (in 5 minutes) and it eliminated the shock.

At five months I was still experiencing on and off situations with a reduced medication and potential "on time" of 12 hours per day. The addition of Tasmar seems to have had some benefit but I am now adjusting my medication to assist in the management of dyskenesia .

I am hopeful, based on the experience of others, that the first 6 months were the hard yards and that the second six months we will see further improvement in my hand writing, balance, dyskenesia.

If I to do it again, I WOULD.