Debabrata Roy, 49 is affected with early Parkinson’s disease which has turned his life and world upside down. He talks about the inevitability of the progression of this dreaded ailment.
When were you diagnosed?
Two years back, I was diagnosed with Parkinson's Disease. About six or seven years back when I had a gall bladder operation, I noticed the symptoms back then, but nobody really took it seriously. Now it has become pronounced.
What were the early symptoms of Parkinson's Disease?
The very initial signs were tremors in my left leg. Now I have tremors in the fingers of my hand too.
Is there a history of Parkinson’s in your family?
No
What is your present condition?
I am unable to walk properly. My head spins. My left hand fingers have become useless. The right hand still manages to work.
Please describe your experience of managing the early stages of Parkinson’s disease.
Nothing has worked for me. No medicine, no doctor has worked. I have seen no improvement in myself at all. Medicine takes care for a while, for about an hour maybe after consuming it. And then the tremors come back again. When I go to work, I become extra tensed, and tend to become less balanced. That is when I pop in a tablet. The tablet works well for an hour or two and gives me an extra energy to work. After the effect fades away, I go back to my trembling self.
Any related complications of Parkinson's?
Insomnia and headache. I take sleeping tablets.
What medications are you on?
Syndopa Plus 1-1
Are there any side-effects of the medications?
Medicines seem to make it worse. It offers temporary relief. But actually they are useless with no long term effect.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
I feel very insecure. I feel I don’t have any future and I am progressively getting worse. My advice to others is that they should do more yoga, and sometimes even alcohol intake (There is no evidence that alcohol helps with Parkinson's. Please discuss with your doctor on the effect of alcohol on your medications). It improves digestion. Because I had a complicated gall bladder surgery some years back, I had a very expensive medicine, Pentasa 500 mg, for about a year. But then it weakened me later.
Have you learnt anything in managing in your condition that you wish you knew before?
No. There is nothing that my medical history has taught me which can help me now. I am in dire straits, and it is worsening by the day.
What kind of specialists do you consult and how often?
I have been to NIMHANS, Bengaluru. But they could not help me there, other than prescribing some medicines which did not help either.
What resources are available to you in your city to help you manage the condition?
There is nothing available in my city (Itanagar, Arunachal Pradesh).
Have you had to make some changes to your lifestyle because of your condition?
Yes, I have had to make a lot of changes to my lifestyle. I am not a 60 year old man, who can sit at home when he suffers from Parkinson’s. I need to work and to earn. My work life has suffered a lot because of being detected with early Parkinson’s. I manage computers which is a high tension job. But now I cannot concentrate. I cannot go out. I cannot do anything myself. All I do is eat and sleep. I often feel its better to die because I have a meaningless life.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
Yes, I have done both yoga and taken homeopathic medicines. But both offered only temporary relief.
Has it been difficult emotionally to cope with your condition?
Yes it is difficult. Because I cannot do anything I want to. I cannot go to most places. It is useless living like this. I go to work but I have to return home early because I cannot stay very long at work.
How has your family supported you?
They don’t always understand my difficulties. They don’t know much about Parkinson’s, so they cannot understand what I am going through. I cannot really blame them. Only a person going through with the experience knows what it is like.
Did you see a counsellor for support? Were you offered counselling by doctor?
No. Nobody suggested to me that I should go for counselling. And I also don’t think it is important, because it cannot help me. No kind of money or counselling can help me. Today if someone tells me that he will cure me in exchange of Rs 5 lakhs, I am willing to pay the money. But I am convinced I am incurable. Therefore, every day is a punishment for me.
How did your friends treat you ? Were you isolated?
I don’t have many friends. In any case, how will I be able to socialize with them? I cannot walk properly. My eyes keep burning all the time.
What was the hardest part of the treatment?
That nothing works in stopping the progression of the disease.
What kept you going?
Family Bonding is important because that is what keeps me alive. Everyday I get up and hope that I will be cured. But that is not to happen. I am gradually losing hope. I have often thought of ending my life. But I could not do so, thinking about my wife and son. What will happen to them if I take this extreme step?
How has this changed your life perspectives and ambitions?
I feel it is a disaster for anyone afflicted. I feel my life has come to an end.
PatientsEngage Note: While PDMDS has support groups in the cities mentioned here http://www.patientsengage.com/conditions/what-support-group, online forums and whatsapp groups can help a lot. Talking to a counsellor, even online ones can help. So seek out help
