Javed Ameer,54 from Ahmedabad, India had a life changing experience when he suffered a cerebral stroke, despite leading a disciplined life. He talks about how he has coped and is still coping with it, and rues about the unpredictability of life.
Please tell us a bit about your condition before you had the stroke.
There is nothing exceptional about my condition. I used to be on medicines and a management regime for essential hypertension for some 5 years and had an exciting high-adrenalin job in conflict zones for some 3 years and was enjoying it.. The last job, when I had my cerebral stroke, was as Head of Programs of South Sudan for an NGO called Plan International and I was based in a place called Juba.
When were you diagnosed?
The Essential Hypertension was diagnosed some 5 years ago.
What were the early symptoms?
High Blood Pressure.
Is there a history of cerebral stroke/hypertension in your family?
Yes my mother died due to cerebral stroke at the age of 42.
What is your present condition?
In the medical jargon of the Brain MRI report of 1st Nov. it is as follows:
The MR findings shows gliotic area with hemosiderin deposit in bilateral cerebellar hemisphere, more marked on left side.
Chronic infarct in right coronal radiata – centrum semiovale region.
Diffuse cerebral and cerebellar atrophy with chronic white matter ischemic changes.
Whatever it may mean - I have issues with balancing myself when walking, I tend to fall but can now get up on my own, with no external support.
Please tell us about the time you had the attack and how you coped with it.
The memory of the night that I suffered my stroke, alone and away from my family, still haunts me. This was in Juba, the capital of South Sudan, where I was working. I woke up in the middle of the night with a severe headache and nausea. I started vomiting soon enough. While I lay there, I was trying to call from my cell phone and at the same time my whole life was flitting past my eyes. I even tried to remember my training and went into a foetal position. I managed to get through to my colleague who arrived and took me for a CT Scan to the only hospital privately run by Ugandan doctors. I returned home and went to office the next day. In the midst of a meeting, I collapsed. My CT Scan showed a haemorrhage, I went into a coma and was in the hospital for the next 44 days. Next day I was evacuated to Nairobi, where my wife came and took charge. She was there at my side all the time, even when I was not responding. And here I am today!
Do you suffer from any related complications?
None that I know of . I have not been diagnosed with any.
What medications are you on?
Don’t know the generic name. The brand names are
- SELOKEN XL 50 MG 1-0-1
- AVAS 10 MG 0-0-1
- PROTOTAG 20 MG 1-0-1
- DILIGAN 25MG 1-0-1
- NEXOVAS 10 MG 1-0-0
- ZILANCE 80 MG 1-0-0
Were there any side-effects of the medicines?
None that I know of.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
My advice to others would be to get regular check ups. Though very honestly I go through extremely angry phases when I tell people just eat and drink and make merry. I used to lead an extremely disciplined life -- a very active trekking, rock climbing, cycling, gymming life and I am here today in this deplorable condition of being partially paralysed because of my stroke. Friends and doctors, of course, assure me that I am back on the road so soon only because of that discipline.
What kind of specialists do you consult and how often?
I consult Cardiologists once a month.
What resources are available to you in your city to help you manage the condition?
I have all the resources available in my city, of course for a price.
Have you had to make some changes to your lifestyle because of your condition?
I was already a disciplined guy. I have just kind of reinforced it with meditaton too and music.
Have you tried complementary medicine or therapies?
I spent one month in a Kerala Ayurvedic Massage hospital and spent something like Rs 2 lakhs there It was a positive experience,though I don’t know if it contributed to my recovery.
How has your family supported you?
By being there for me.
How did your friends treat you? Did you feel isolated?
It is indeed interesting to see how people change when you go into functional disability. Yes, I havegone through extreme isolation but I suppose it is all a part of it and no point holding any grudge against anyone. Everyone is fighting his/her own battles. Why expect?
What was the hardest part of the stroke/treatment?
Accepting that you are so vulnerable, even with all the fitness regime and the discipline in food intake that I put myself through before the stroke.
Related Reading: 3 Tips For Rehabilitation after Stroke
Has it been difficult emotionally to cope with your condition?
It has been extremely difficult. And don’t say EVER that it is cowardly to commit suicide. You need extreme ‘courage’ to do so.
What kept you going?
The curiosity to see what else is waiting for me at the next corner.
Did you see a counsellor for support? Were you offered counselling by doctor?
No. Not yet.
How has this changed your life perspectives and ambitions?
I was never really very ambitious.I have meandered like water, so far. I was extremely lucky to have been in the humanitarian sector where my vocation itself seemed like a vacation. It took me to some extremely exotic virgin forests and locations and I met some very interesting people too.. It exposed me to travelling, food and music.
My experience with cerebral stroke only reinforced the realisation that everything in life is ephemeral. Everything you acquire in life can go in an instant. My whole life turned upside down all of a sudden. So I like to stay humble and loving.
Seek help if you are depressed. Please contact Suicide Prevention Lines in your country if you are feeling suicidal.
Suicide prevention lines in India
Suicide prevention lines in Singapore
