My father’s experience with Parkinson’s Disease

Daddy

My father was a Railway employee and I always remember him as a hard-working, dedicated and honest person. We are 3 siblings and most of our growing years were spent in Bhusawal, a small town in Maharashtra. After completing my college in 1999, I joined an IT company and moved to Delhi. My parents were still living in Bhusawal.

It was November, 1999 and I was returning from office when I called up my Nanaji’s home. That was the first year of my job and I used to call up home from a nearby STD booth once a week. Daddy was not keeping well for quite some time. Nanaji picked up the phone and told me that Daddy has been diagnosed with Parkinson’s Disease. I heard of the disease somewhere but was not sure what it exactly is. It was only when I browsed the internet about it that I came to know how debilitating this disease is. I still had no idea how emotionally and physically draining this disease can turn out, not just for the patient but for the whole family.

How did it all start

My father experienced the first symptoms of the disease in mid 1999 when he went to Wardha on a deputation. He was feeling weakness in his left hand and found it difficult to lift it. He found it tough to shave his face using left hand. The left hand used to move slowly while walking and his gait was drooping. A doctor friend of his noticed these symptoms and asked him to consult a neurologist. Daddy came back to Bhusawal, his base location, and consulted Dr. Kanchan from Railway Hospital. Dr. Kanchan, after some checkups and physiotherapy, confirmed the diagnosis to be Parkinson’s Disease.

I was too busy with my first job and had to work in shifts. That kept me so busy that I just couldn’t go and give my dad a visit. He went to SMS hospital, Jaipur for a complete checkup. There the doctors confirmed his diagnosis and from there on began the downward spiral in Daddy life.

The struggle begins

He was depressed. He was suffering from recurrent bouts of stiffness. When he came to Delhi to visit me, I saw him fall down in the bathroom. I could feel his pain and felt like crying. My mother used to cry whenever she used to see him falling or getting stiff. The doctor put him on Syndopa and other anti-depressants. Still he was constantly getting stiffness in his body. Sometimes he was absolutely fine and suddenly he used to get stiffness all over. The disease was acting wierdly.

Life kept going further. Daddy’s work performance for deteriorating and his appraisals suffered. He was transferred to Jhansi, the worst place in Railways to work. This had a major impact on his life. In Jhansi, daddy’s health went down drastically. He used to return back from office whenever felt he like getting a bout of stiffness. His condition was so bad that he was forced to take voluntary retirement on 10th Dec, 2004, just before my marriage.

We consulted top neuro specialists like Dr. Paresh Doshi from Mumbai and Dr. P.K. Sethi and Dr. Madhuri Behari from Delhi. The medicines seemed to work sometimes but were not much effective in relieving his body stiffness. We also consulted ayurvedic doctors but that too didn’t help much. Daddy was slowly moving into depression and his condition was deteriorating.

The downward spiral

In December 2005 I got an opportunity to go to Germany for six months. Daddy’s condition was bad and down inside I knew it will further deteriorate if I was not there with him. Daddy had a lot of faith in me and being his only son it was my responsibility to be with him. I went to Germany and had to return back in June, 2006 as his condition was getting worse. I brought him along with me to Delhi. He suffered from bed sores in April 2007 and was since then on bed. He could hardly get up and his sores were getting bad.

Daddy’s constipation was getting worse. He found it difficult to move his bowels and was going to bathroom every 3-4 days. He got used to using enema regularly. This further moved him into depression. Later his right hand stopped moving and he was spending most of his time in bed. He stopped walking and speaking. His bed sores got extremely bad.

His last days

We hired Dilip from nearby Kailash Hospital to come every morning and clean Daddy’s wounds. He also helped Dad in physiotherapy. But Daddy’s condition was not improving. He could hardly speak and eat. Dilip inserted a feeding tube so that we can feed him easily. Daddy’s blood report showed he was having anemia and deficiency of Sodium and Potassium. He started taking medicines and was improving slightly when suddenly he succumbed to the disease on June 07, 2007. Doctor said he suffered Cardiac Arrest.

I know Daddy went down fighting this disease bravely. He wanted to live. He told Mummy that he wants to die as a grand-father. And he did. He became Nanaji (grand-father) on 31st May, 2007, one week before he passed away. He blessed the grand daughter. Though he could not hold her in his hands, he looked at her with pride. He was so happy.

He must have asked God to take him away as his last wish was fulfilled. Daddy was brave. He fought hard. He was a genius who always lived for his family. There was nothing more important to him. He was a scholar who cleared AMIE, one of the toughest exams of those times, after his marriage. He excelled at work and helped his colleagues in whatever way possible. I will always miss him and will always be proud of him.

Note

I will be updating this story with more details on the medicines my Dad took and his experience with their side effects. I will also update the list of doctors we consulted and who helped in my father’s fight with Parkinson’s Disease.

Please join our Forums on Parkinson’s Disease and Alzheimer’s Disease to discuss more on these diseases and help the community.

1 COMMENT

  1. Thanks for sharing a precious part of your life ,Its both painful and beautiful to read the tough battles fought and won ! Thanks for your heartwarming efforts to create much needed awareness among all the precious lives.

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