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Submitted by PatientsEngage on 18 August 2018
Image: Black and white pic of Marianne's parents as a young couple - mom on the left and dad on the right

Marianne de Nazareth recounts how traumatic it has been to see both her parents suffer from Parkinson’s and how the progressive disease strips the dignity of the individual.

Parkinson’s is an old disease in our house. Both my Dad and Mom were afflicted with it, unfortunately.  My Dad was ravaged by it first, and now it is after my Mom. It has been tormenting our family for nearly three decades now.

My father, Anthony Michael Furtado, got Parkinson’s in his mid-50s. We started noticing a slight tremor in his hands, but didn’t give it much thought. We were secure in the knowledge he was a Wing Commander in the Air Force, big and strong, and no harm could befall him.

Dad was always a go getter, up and about, doing things. There was nothing he couldn’t handle – repairing things at home, making furniture. He loved fretwork and with his fret saw he would make Disney characters. He was really a mentor to all of us five siblings, always motivating and inspiring us. He would say “don’t waste that unforgiving minute; be active, be connected.”

Debilitating hand tremors

So even though his hand trembling had increased, we were still finding it hard to come to terms with it. But as the years rolled by his tremors worsened. Luckily, it was only his hands that were affected; his head was stable.

But the lack of control and coordination in his hands began to impact his whole life. There came a time when he had to forego his most enjoyable activity of reading the newspaper every day. He would love to sit in the veranda with his cup of tea in the morning and scan the paper for hours. Now, since he couldn’t hold the papers steadily, he couldn’t read. Gradually, his writing abilities declined and he was not able to sign. His signature became absolutely indecipherable. Poor fellow had to switch to giving his thumb impression.

In his late 60s, the shaking in his hand had become so severe that he couldn’t even feed himself. We had to feed Daddy now. When we would go out for dinners or weddings, he used to be very embarrassed. He had to be fed first and then I would go for my meal. It was so terrible for us to watch him - this big athletic Air Force officer reduced to a helpless dependant. Parkinson’s continued to nibble his abilities and spirit away.

There was nothing he could do. His activities were zero. He had become totally dependent on his children. When I would come in the evening, to visit him, he would ask me ‘Marianne can you write this letter, Can you do this bank work.' He was like a shadow of himself.

In the last few years of his life, we had to keep a 24 hour male nurse to take care of him.

Medicines and side-effects

Dad was on a variety of medicines. He was severely diabetic. He also suffered from mood swings, a sort of depression sometimes and sometimes all about town.

He died in his early 70s in 2010. He died the youngest among his brothers, all of whom lived till their 90s. They never suffered from Parkinson’s, or diabetes or mood swings. Poor father of ours had it all.

In contrast to my father, my mother’s (Loretta Furtado) symptoms began when she was in her 70s. It started with the most common symptom of hand tremor. As the disease progressed, she had to cut down her activities. It really bothered her when she had to stop cooking. Like a true Goan, cooking was her passion. She used to love to cook gourmet dishes like chicken Xacuti, sorpotel, etc, not only for the family, but for friends and neighbours as well.

In its heyday, our house would always be reverberating with the laughter and chatter of friends and visitors. Both my parents were extroverts and loved socialising. My mother would love gardening and would cultivate a range of flowers. I remember when the Star of Bethlehem, a rare flower, bloomed once in a year that too only for two hours at night, she would celebrate the bloom by calling neighbours and friends. She would place the plant in the centre of a table and serve coffee and cookies.

One by one, all of my mother’s activities have stopped. Today, she is bedridden and in a pitiable state. Parkinson’s has emaciated her. She cannot even swallow her food, as her throat muscles have collapsed. A pipe has been placed in her stomach, through which ground, semi liquid food is poured into her stomach. It is hell on earth to see her like this.

Drug-induced parkinsonism

It was only later I learnt that my Dad had drug-induced parkinsonism (DIP). People with DIP develop their symptoms following treatment with particular medications. Drugs used to treat mood disorders and behaviour disturbances in people with dementia (known as neuroleptic drugs) are possibly the major cause of drug-induced parkinsonism worldwide.

Editor's Note: These symptoms of drug induced parkinsonism reduce if the "offending drug" is stopped. So discuss with your doctor if there is an option available to change these medications.

But Mummy’s was true Parkinson’s with all the classic symptoms.

Lessons learned

I watched perfectly healthy parents turn into shadows of themselves and regress in front of my eyes. Stripped of any dignity as they could not do anything for themselves and became increasingly dependent on others. Dad resigned himself to die. Poor Mum is wasting away and there is nothing we can do to help her and that makes me personally very angry and frustrated.

Read:I am doing all I can to avoid being bedridden due to Parkinson's

The only advice I can give is help the patient gently with support. It can get very exhausting, but an understanding attitude will help them cope better.

(Dr Marianne de Nazareth teaches media and communication to post graduate students at St. Joseph's College. She is the former Assistant Editor, The Deccan Herald, Content Head MESDI website, Dubai and also freelance Sc & Environment Journalist.)

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