My journey with Parkinson’s disease

In September 2009, I spent five days in St Vincent’s Private Hospital, Sydney undergoing tests and monitoring to find out what was causing my decline in health.

My specialist Dr O’Neill sought his colleague Dr Tisch to confirm his diagnosis of Parkinson’s disease.

It did not take long for this to be confirmed by Dr Tisch who then offered me an alternative treatment of surgery which is called Deep Brain Stimulation. At the time that was a terrifying thought and the answer was ‘thank you, but no thank you’.

I remained a patient of Dr O’Neill with six monthly visits requiring a range of medication adjustments and eventually more frequent consultations.

There came a time when the medication became ineffective and it became a struggle to function normally.

In January this year Dr O’Neill threw his hands in the air and said that he could not help me anymore and that he would refer me to Dr Tisch for monitoring and assessment for the surgery option.

I spent another few days in hospital which clarified the decision that brain surgery would give me better quality of life with the knowledge that the surgery reduces the debilitating effects of the disease though is not a cure.

I passed the rigorous assessment process and was dismayed at the thought that I may have to wait some months as there is a waiting list. To my surprise Dr Tisch rang with the offer of June 27 and 28 as someone had cancelled and he was happy to fit me in.

This time I said ‘thank you…yes, yes, thank you’. I knew God was in this and it was a confirmation to proceed with the operation knowing that it has some possible serious risks.

The neurosurgeon, Professor Richard Bittar is based in Melbourne and operates at St Vincent’s in Sydney when needed for this type of surgery. Dr Stephen Tisch is the assisting neurologist.

Both specialists are well known in medical circles and hold impressive profiles.

The operation is performed in two stages. The first day of surgery was the most taxing as I had to be kept alert enough to respond to questions during the five hour operation which ended at 9.00pm. This part of the operation involved placement of special wires (electrodes) in specific regions of the brain – the area which controls movement. The electrode is slowly inserted in holes shaved in the head and the electrical activity monitored to guide its final placement. Once the surgeons are confident they are in the right position, they stimulate through the tip of the electrode to see whether this helps and to look for side effects. The electrode is then secured in place. It is precision surgery at its best. An MRI scan was done a week or so before surgery and CT scan immediately before and after surgery. I was kept in intensive care overnight and the second part of the operation carried out early the next morning.

For this I was given a general anaesthetic (oh what bliss) and involved running the wires under the skin from head to chest and connected to a battery placed near the collarbone. The battery has a life of nine years, and if required can be replaced.

I recovered quickly and returned home a week after surgery. The specialists are very pleased with my progress.

Since returning home I have been quite overwhelmed by the response and enquiry of so many friends and loving people of the community who have shown such concern and shared our family’s joy that I am now in a much better place than before the surgery.

I would not wish this disease on anyone but through my journey I have learnt so much and it has indeed shaped my life in a new revitalizing way.

I say again thank you to all who have shown Nev and I such kindness and compassion.

In gratitude.

Helen Cowgill, Eden

July 30, 2012

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