On 8/20/12, zoher kheriwala <zos...@gmail.com> wrote: > Hello access Indians, > > I and my brother have the same problem of RP. I had a substantial vision > till my graduation, till my age of 19. But there after till the age of 30 it > > diminished very fast. But since then for last 2 and half years it has not > diminished significantly. > > My parents were aware of the situation so they decided to keep us in the > special school. There we learned the alternative methods of studying. At the > > same time we enjoyed all the moment of our vision in childhood with our > cousins. > > The only solution to the emotional problem is you must accept the reality > right from your childhood. > > Yes even today also I have the stigma of using cane for mobility. But I am > trying to come out of the stigma. > > Sometime this little vision creates some funny incidences. Many a times when > > I walk with my white cane some people observes me very closely. And a times > > I change my direction of walking due to the barriers on the way which I can > > see even before my cane hits it. So some peoples say “he is really blind or > > acting”. When I wait for the bus and when I ask the number “excuse me madam > > what is the number?” at that time the face of the person is really > lookable. > > So rather than regretting for what we don’t have always enjoy of what we > have. > > zoher kheriwala taheri menswear mumbai. skype id zoher.kheriwala > ----- Original Message ----- > From: "Vamshi. G" <gvamsh...@gmail.com> > To: <accessindia@accessindia.org.in> > Sent: Monday, August 20, 2012 8:23 PM > Subject: Re: [AI] RP & hopelessness > > > Hi Ekinath, > > This is a person with RP who has lost substantial part of his vision > in the last 10 years, and has only around 5% vision. I dare say that > even born blind people can not always empathise with persons with > deteriorating vision conditions. The challenges faced by these > people may seem silly to born blind people. For example, asking for > someone else's help is such an easy task for those who experienced > blindness from childhood when compared to those who loose vision > during adulthood. After all, learning cycling is easier at the age of > ten than at the age of 30! Having said this, I must admit that born > blind people have their own set of serious challenges. And please do > not think that I'm trying to create differences amongst the community. > Many born blind people on this very list have been my friends and > mentors in my life. > > Coming to your questions, my answers are as follows: > > > 1. Can I anyhow retain what little I have? > > There is no scientifically validated treatment that can arrest the > deterioration. Though some treatments like ayurvedic treatment at > Sridheryeem, Kerala claim to do so, the experiences of patients has > not been uniform. While some have reported arrest of deterioration > for some years, others haven't got any benefit. A scientific study > has proved that protection of eyes from exposure to bright sunlight > may slow down the deterioration to some extent. And no study has > shown that intake of vitamin A can do any good in this regard. So, > the answer to this question is a sorry. > > 2. If I lose all my sight will any break through treatment in future > can be availed by me because they say at least little vision is must > to treat. > > This depends upon the kind of treatment. The bionic eye, which is a > commercially available treatment option for persons with RP in some > parts of west, is useful only for those who have lost significant part > of their vision due to RP. To be more precise, it is specifically for > people like you. But its current cost is unreasonably high even for > people in the west. > > Other treatment options like gene therapy and stem cell therapy are > still under clinical trials and may take some more time before being > commercially available. But as you pointed out, gene therapy is > possible only for those who have some residual vision. But going by > what you have described, your condition in the recent past wouldn't > have been ideal for this treatment. So, there is nothing for you to > worry about because of the recent developments. > > 3. I have made up my mind to enjoy every bit moment that has been given > to me before I lose all my sight. > I will take lot of leaves and plan more outings so those last moments > of light are saved in before it’s time for darkness, hmmm, no I don’t > know how to describe that but it’s more horrible than darkness. > > I totally agree with you on this. Enjoy whatever vision you have. > That's what I do, especially with my fast deteriorating vision > condition. Make lot of outings, see beautiful places, meet lot of > people to capture their images so that you can visualise them even > after turning blind, see beautiful heroines in films (smile), and do > anything and everything that you feel like doing with your residual > vision. > > Finally, I would like you to be part of Retina India, an organisation > established with special focus on retinal disorders. Though I have > learnt how to cope up with visual impairment to a great extent from > Access India mailing list, being part of Retina India and interacting > with many people with similar vision conditions has helped me a lot. > Besides, Retina India is making efforts to bring clinical trials to > India which may take some more time. > > I always had a great admiration to your writings on this list. So, I > would deem it a privilege to have a call with you either on phone or > skype. Lets share some of our feelings, buddy. > > On 8/20/12, Ajay Minocha <ajayminoc...@gmail.com> wrote: >> Hi friends, >> Allmost every member of this group has his life full with these very >> emotional and heart touching insidents. Ekenath sir I totally agree >> with you. I also have allmost similar conditions like geetha mam >> mentioned but ya it makes me chearful to see light. But I don't get >> bothered at nights as well. I can't see anything except any window >> opened or closed on my computer screen I rather turn it off. it >> depends on acceptence. Earlier I was capable of reading printed books >> and doing a lot of things which I can't even think of doing now but it >> is a part of our life. I will not touch upon that aspect for now in >> this very short interwell of only 9 to 10 months which took away a >> large percentage of my very little eyesight which I had earlierit gave >> me a lot of hardships from convincing my family, friends to adjusting >> myself to study with screen readers. But somehow now I don't even get >> bothered about that because it will never comeback. I have a lot of >> plans to keep my life chearful. @ Shona mam! I also had the same >> condition earlier in my life. But that was only my acceptence and >> ability to talk about my disability without any hesitation which >> helped me a lot in getting out from this tromatic situation. Yes I >> know I can't drive, I can't see any movie, I can't makeout anybuddies >> facial expressions. But there are certain things which keep me >> chearful. I don't have very large number of friends but those who are >> with me they don't forget to include me in any social gathering. It >> was me who told them without any hesitation the way of holding my >> hand, the methods of my studies. Even some of them are patient enough >> to listen about screen readers without even moving from their place. >> They don't call me because of any liability but some of them love my >> different sskills like cracking jokes and solving anybuddies tech >> problems. I never forget to make them laugh even in toughest >> situations. When I used to be quite it used to hert me alot when >> somebuddy asked about my disability or somebuddy who pulled me like a >> cart instead of gentally holding my hand. But these accessindian >> fellos helped me a lot in a large number of aspects throughout my >> life. Till 2010 I didn't have any visually impaired friend but now I >> have a lot. I enjoy the extracted audio of movies lying on my bed >> without straining my eyes. Yesterday our old monitor got damaged. >> Everybuddy was panicked till I reached home from my coaching class. it >> was not turned off properly so showing some boot options like start >> window normally or safe mode etc. I started that and asked about the >> light which lightsup constently when we do any heavy work like booting >> or shutdown. My dad said it was not and I just pressed enter pc got >> booted in couple of seconds. and from then I am writing mails chatting >> skyping whereas they are worried about screen and asking for my >> laptop. So I took this situation on a very positive note. >> regards >> >> On 8/20/12, Shona Man <shonam...@gmail.com> wrote: >>> The worldd for me too is a growing dark due to disappearing my center >>> vision. I was a person' who was a naughty' kiddy and having amaising >>> arrangement of my personal contacts, but everything has been lost on >>> the account of my diminishing vision. Many people consider me as a >>> sighted person as my eyes do not reflect any sense of blindness by >>> looking on them, but there is a dark inside these two little balls. I >>> have lost many of my relations because I do not often visit them and >>> most of the time confine my self at my resident pllace. But I think a >>> lot' if I had been a sighted person' could enjoy every moment of my >>> life, as by driving, by making every one pleased by my activities but >>> alas! nothing is with me which could me pleased when i have lost my >>> sight. >>> >>> >>> On 8/20/12, Geetha Shamanna <geethas2...@gmail.com> wrote: >>>> Hi Ekinath, >>>> >>>> I fully understand your fear of losing the little vision you have, >>>> although >>>> it is practically of no use. Although I have been nearly blind since >>>> birth, >>>> the little vision I have had has kept me going. Just being able to see >>>> light >>>> makes me cheerful as well, especially on sunny days. >>>> >>>> Did you have your eyes examined for cataract? Doctors recently >>>> discovered >>>> cataract in both my eyes and operated them. I have been able to see a >>>> lot >>>> more light ever since. >>>> >>>> I do not wish to raise hopes -- cataract surgeries don't always result >>>> in >>>> an >>>> improvement in vision. But if you do undergo tests for cataract now or >>>> later >>>> and if doctors do determine cataract, do have it removed. It might help >>>> sometimes. >>>> >>>> It is important to accept reality otherwise and carry on with life. Try >>>> learning to meditate. It is an effective way of grounding oneself in >>>> reality. >>>> Geetha >>>> -----Original Message----- >>>> From: accessindia-boun...@accessindia.org.in >>>> [mailto:accessindia-boun...@accessindia.org.in] On Behalf Of Ekinath >>>> Khedekar >>>> Sent: 19 August 2012 07:55 >>>> To: accessindia >>>> Subject: [AI] RP & hopelessness >>>> >>>> Hi Friends, >>>> >>>> Today and last night I was a little senti. >>>> >>>> My right eye in which I have mere light vision has been paining for >>>> couple >>>> of days and therefore, I visited a specialist. >>>> >>>> She told me nothing abnormal nieghter pressure not anything to worry >>>> but >>>> just an usual degeneration of my retina due to RP and recent maleria. >>>> >>>> So it means I might lose my taken for granted just a light perception. >>>> >>>> Friends, it struck me hard. >>>> >>>> I have zero vision in my left eye. And some of you will exactly >>>> understand >>>> what it means. I mean I shared this with my close friend but she could >>>> not >>>> appreciate and said "then it will go all dark right?" >>>> >>>> No sighted person can understand this but totally blind persons. >>>> >>>> I am very scared to lose this little vision. Practically, this >>>> remaining >>>> vision is of no use, but I can see light which makes me cheerful. I can >>>> make >>>> out shadows etc. and appreciate weather. >>>> >>>> But it might go away and then what will follow is not even darkness, >>>> but >>>> complete elimination of one of the senses. >>>> >>>> I will never be able to see again. >>>> >>>> What frustrates me is that there's no way out or around RP to be able >>>> to >>>> enjoy the beautiful gift of seeing partially though. >>>> >>>> So questions for the learned and experienced: >>>> >>>> 1. Can I anyhow retain what little I have? >>>> 2. If I lose all my sight will any break through treatment in future >>>> can be availed by me because they say at least little vision is must to >>>> treat. >>>> >>>> Last but not the least: >>>> >>>> I have made up my mind to enjoy every bit moment that has been given >>>> to >>>> me >>>> before I lose all my sight. >>>> I will take lot of leaves and plan more outings so those last moments >>>> of >>>> light are saved in before it's time for darkness, hmmm, no I don't know >>>> how >>>> to describe that but it's more horrible than darkness. >>>> >>>> kindly answer my queries and help me do the best in circumstances. >>>> >>>> Cheers >>>> >>>> >>>> >>>> >>>> >>>> >>>> >>>> -- >>>> "The waves breaking on the surface draw all the attention, but it is >>>> the >>>> current beneath the water that determines your direction." >>>> >>>> >>>> Search for old postings at: >>>> http://www.mail-archive.com/accessindia@accessindia.org.in/ >>>> >>>> To unsubscribe send a message to >>>> accessindia-requ...@accessindia.org.in >>>> with the subject unsubscribe. >>>> >>>> To change your subscription to digest mode or make any other changes, >>>> please >>>> visit the list home page at >>>> http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in >>>> >>>> >>>> >>>> >>>> Search for old postings at: >>>> http://www.mail-archive.com/accessindia@accessindia.org.in/ >>>> >>>> To unsubscribe send a message to >>>> accessindia-requ...@accessindia.org.in >>>> with the subject unsubscribe. >>>> >>>> To change your subscription to digest mode or make any other changes, >>>> please >>>> visit the list home page at >>>> http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in >>>> >>>> >>> >>> >>> -- >>> LL.M candidate >>> at Faculty of Law in University of Delhi >>> >>> >>> Search for old postings at: >>> http://www.mail-archive.com/accessindia@accessindia.org.in/ >>> >>> To unsubscribe send a message to >>> accessindia-requ...@accessindia.org.in >>> with the subject unsubscribe. >>> >>> To change your subscription to digest mode or make any other changes, >>> please >>> visit the list home page at >>> http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in >>> >>> >> >> >> -- >> Ajay Minocha >> Mob : +91-7827188455 >> E mail : ajayminoc...@gmail.com >> ajaymanu...@gmail.com >> Skype : ajayminocha2 >> >> >> Search for old postings at: >> http://www.mail-archive.com/accessindia@accessindia.org.in/ >> >> To unsubscribe send a message to >> accessindia-requ...@accessindia.org.in >> with the subject unsubscribe. >> >> To change your subscription to digest mode or make any other changes, >> please >> visit the list home page at >> http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in >> >> > > > -- > G. Vamshi > Mobile: +91 9949349497 > Skype: gvamshi81 > > www.retinaindia.org > From darkness unto light > > > Search for old postings at: > http://www.mail-archive.com/accessindia@accessindia.org.in/ > > To unsubscribe send a message to > accessindia-requ...@accessindia.org.in > with the subject unsubscribe. > > To change your subscription to digest mode or make any other changes, please > > visit the list home page at > http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in > > > > > Search for old postings at: > http://www.mail-archive.com/accessindia@accessindia.org.in/ > > To unsubscribe send a message to > accessindia-requ...@accessindia.org.in > with the subject unsubscribe. > > To change your subscription to digest mode or make any other changes, please > visit the list home page at > http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in > >
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