My Tryst with Parkinson's Disease (W.L. Hangshing)
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I at first delayed getting the MRI done as firstly it was expensive and I could not believe that such a disease could inflict me. I read from the internet that the disease could be hereditary and I knew for sure that neither of my parents suffered from it and I did not remember any of my grandparents having had the disease. Neither did I have any severe injury to my head which could have caused it as it did for Muhammed Ali. I was an active sportsman while in School and College having played almost all games. In college I played football and hockey for the College team and excelled in Rifle shooting in which I became the captain for the Delhi University team. Shooting is a sport which requires very steady hands and it just seemed unlikely that I could be inflicted with a disease which caused trembling hands.
However at the back of my mind I had a niggling feeling that I could be in for it since recently during my rope skipping sessions (which I used to do every evening to keep fit) I noticed that the skipping rope would very often get caught in my left foot. I eventually went for the MRI in December of that year and the results confirmed that I had Parkinsonism. After a month or so I got another MRI done at PGI Chandigarh with the same results. Doctors prescribed syndopa and Ropark which I reacted severely against as I used to puke and experienced reeling and headache. I stopped taking the allopathic medicines and went in for Homoeopathic medicines for a span of almost three years. I am not sure whether the homoeopathic medicines helped or not. The doctors used to tell me that that with their medicines the degeneration would be slowed down. As there was no way of measuring whether the degeneration had been slowed down by the medicines, one could not be sure.
Anyway, whatever the case, by the middle of 2004 my condition was worsening. My movements had become slow, I shuffled while walking, I couldn’t speak involuntarily and when I spoke my speech slurred and drawled and my knees trembled. My handwriting became scrawled and small and I could barely sign my name. My typing was reduced to one finger typing. I even contemplated early retirement. After Homoeopathy I tried almost all kinds of therapy and alternative medicines – natural therapy, Ayurvedic medicines, Yunani medicines – but my condition continued to deteriorate. It was then that I reverted back to Allopathy. I managed to overcome my reaction to Ropark – one doctor had told me that it is natural that you react against the medicine that you need most, another told me that it is hoped that Ropark can stop the degeneration process. But the doses of Syndopa required to keep the disease under control increased steadily and became very high, causing symptoms of dyskinesia and stiffness in the limbs. My friend, Tushar who runs a health portal – aarogya.com , helped me with a lot of information. We considered stem cell therapy but then Tushar suggested Deep Brain Stimulation which was also the opinion of doctors at AIIMS. They decided to recommend DBS (Deep Brain Stimulation) implant in my case after a thorough examination in mid 2006. There are certain criteria required for being eligible for DBS implant, like the type of Parkinsonism one is suffering from, the overall health of the patient and the age of the patient. I seemed to fit the bill and was declared eligible to undergo the DBS surgery.
I underwent a two phase surgery at Jaslok Hospital on 5th and 6th October 2006. The operating team was led by Dr Paresh Doshi and it lasted for 6 hours on the 5th, during which two electrodes were implanted deep in my brain. I was totally awake during the whole operation as only the points on my skull where drilling was done were under local anesthesia. The main discomfort – to say the least – during the operation came from the fact that my head was screwed on tight to clamps and I couldn’t move my head at all for the whole of the six hours. Believe me, this requires the utmost patience and mental serenity and calm. The operation by itself was not painful or of any discomfort as it is ironical that the brain which registers pain inflicted on any part of the body does not register it if inflicted on itself. The second phase of the operation was conducted the next day under total anesthesia and consisted of implanting the pacemaker and battery under the skin on the left side of the chest and connecting this to the brain implants by a wire running down behind the ear and just below the skin. I was discharged from the hospital within ten days of the surgery.
Accuracy in the placement of the electrodes in the nucleus of the brain is essential for the implants to be effective. The placing of the implants, in my case, was bang on target for which I am grateful to Dr. Paresh Doshi. As a result I am responsive to even slight changes in the parameters of the implants during calibrations done through a computer. Calibration of the parameters of the implant have to be set every two/three months and it is a continuing process much like the way a string musical instrument like the guitar or the sitar has to be retuned after they have been played for any length of time. Dr Sumit Singh, Neurologist and Associate Professor in AIIMS, has been patiently doing this calibration for me at regular intervals of one to three months for the past two and a half years.
The benefit of DBS is that I now take only 1/6th of the amount of syndopa I had been taking before surgery. There is of course the hassle of having to go for re–calibration regularly and the DBS itself causes temporary dyskinesia immediately after re–calibration, and in my case the battery had to be replaced as it lasted only for two years and two months for some reason, although it was said that it would last for five years or more. However the benefit far outweighs the disadvantages and if as in my case the cost of the surgery and the machine can be reimbursed by your employer – GO FOR IT!
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