Mr. Pramod Kumar, 89 was diagnosed with Age Related Macular Degeneration or AMD in 1980. Here he tells us how he has adapted to his disability over the last 25 years and continues to live life to the fullest.
The condition
AMD attacks the macula which defines fine vision. I have my lost fine vision and even the peripheral vision in my right eye is also getting diminished. So, effectively I use only my left eye for peripheral vision. But there is no fine vision.
First diagnosed
The problem became apparent sometime in 1976, but the doctors could not identify it. It was finally diagnosed in 1980 when an ophthalmologist in Ajmer asked me to go to AIIMS. The doctor at AIIMS told me that AMD was developing, and it would progress over time at a slow pace.
The symptoms
I was visiting relatives in Montreal. We were driving on the highway and the barricades on both sides appeared loopy to me. The U-shaped loop kept travelling with me. Second, my vision was distorted in the right eye while watching TV. This led me to AIIMS where they made the AMD diagnosis.
Subsequently I went to Moorfield's Eye Hospital in London. The doctor there performed angiographies on the eyes and confirmed the AMD diagnosis. He said it was a dry type of AMD that had slow progress but no known treatment.
The doctor at Moorfield's was very helpful and he taught me how to manage in the future with spoken word and magnifying glasses. He told me that I could see at that moment but in a few years, I would not be able to read. He suggested I get used to the idea of everything being read out to me so that I could continue to work efficiently. He gave me some tips on how to function effectively without my eyesight by using bold letters and using cue points for discussions in meetings.
Any special tests
There were no special tests apart from the eye angiograms at Moorfield's. I repeated these tests in the USA in 1988 which reconfirmed the diagnosis of dry AMD and slow progression.
Family history:
There is no family history known to me of AMD. No one in my immediate or extended family has had AMD. I was told by the doctors that AMD is not a hereditary problem but a ‘heredity’ problem. This means that one in the herd suffers so that the rest of the herd is safe. I was told this when I asked the doctors if my sons would be affected by the same problem, and he assured me they would be safe.
Your reaction:
I was not upset when I heard the diagnosis. I realized I was disabled and decided to make use of the faculties I had such as my excellent memory and sharp hearing and move on with life.
I had to let go of a big opportunity due to the AMD which I would have grabbed otherwise, but I did not let it upset me. It is all part of the game of life. All the family has been very supportive. My wife has helped me a lot and continues to be my support.
Family reaction:
My father was upset on hearing the diagnosis, but he was comforted when I told him that the doctors had assured me that though I would lose reading ability, my peripheral vision would never go, and I would be able to function normally. My family accepted the diagnosis with grace. I had to tell my wife that I may have to take premature retirement as I would not want to work under anybody’s obligation, and she was very supportive. Fortunately, such a need did not arise, and I retired at a very senior position of General Manager, Diesel Locomotive Works, Varanasi.
Above: Mr. Pramod Kumar with his wife
Work life:
After the diagnosis I was able to type for some time and also read typed matter but by 1985 I could not read a handwritten letter at all. In another five years I found it tough to read small type in a magazine like India Today. And my reading of typed matter in office became very slow.
I learnt to manage my work with spoken word. My secretary would read out every document to me before meetings and since I have a very sharp memory, I was able to have discussions and take decisions based on what had been read out to me.
I had concentrated lights put above my table that helped me with my vision. I also used different kinds of reading aids. I used magnifying glasses to read, and telescopic lenses to see small print such as charts on railway coaches. I needed different glasses for different times and uses such as a pair for reading a layout diagram, a pair for outdoor use etc. I carried three pairs of spectacles to work. I used binoculars when I went to see plays.
I was to be posted to an important position in the railway board office which would have been helpful to me even post-retirement, but I could not take it as I did not want my inability to read to get detected and they may have asked me to retire. I performed my duties without my disability being a hinderance and became the General Manager of the DLW workshop. At the workshop I always ensured that I had an escort with me to help me navigate the shopfloor to avoid falls. I made use of all my faculties and the help of my trusted secretaries and did my job to the high standard of performance that I had set for myself.
Other therapies:
A close relative suggested homeopathy and I tried it, but it did not work. Another relative who lived in Montreal, Canada sent me an article by a person who was advocating high doses of concentrated vitamins. They were expensive but I tried them for a year with no effect. I tried all these medicines despite the doctor at Moorfield's telling me not to take any medicines as they could harm me. I guess I trusted the vitamins because they came from Canada, but I now realize I had succumbed to a confidence trickster.
Current medication:
I don’t have any medication for the condition. I do a check-up once a year though they advise 6-monthly tests. I have been warned that the dry type of AMD can turn into a wet type. They have told me that I will know if that happens because the vision will deteriorate very quickly. The doctor has told me there is medication available to block the leaking nerve and stem the damage in the wet type of AMD.
Changes in lifestyle:
I could not drive so I had to keep a driver to take me around. The second was to shift from reading to the spoken word. I am an avid reader and also a follower of current news and politics. My iPad does a lot of reading for me, including the news and books as well. I have a waiting list of books on the Audible app. But sometimes I need to ask for help with reading out something such as a message on a phone.
In the last two years I need help in walking when I go to an unknown place where I do not know the lay of the land. Places such as hospitals with many corridors and signages are tough to navigate on my own. There is also the danger of injuring myself if there are steps or potholes etc. I cannot tell the direction to walk in and when I go for my daily walk. I need help to set out in the right direction after which I manage on my own. I am comfortable with my daily routine at home and do all my chores independently. I am also easily able to navigate familiar places such as the club where I know the lay of the land.
Earlier I did not tell anyone about this disability and many people thought I was being very snobbish. Now I let people know that I cannot see so I may not be able to recognize them until they talk, and I recognize their voice.
Future
I am living my life the best way I can while continuously adapting to my limitations. I published a book in 2018 called Crossing the Lines about the railways and I am in the middle of writing my second book now. I am 89 years old, and I hope that my left eye keeps functioning for the next decade.
Advice:
Face your disability bravely and practically. Make full use of your other faculties.
As told to Smita Vyas
