h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

My Father has just been diagnosed as having Macular Degeneration Disease. I believe this is when part of the retina becomes damaged and central vision deteriorates. We understand that in his case it is not possible to reverse the damage and his sight will never recover.

My father is partially retired and most of his hobbies involve use of his eyesight so he is finding this really hard.

Does anyone have any tips or hints as to how to cope with this?

He might want to start learning Braile whilst he still has some sight, as I think its ment to be easier that way, but you would be supprised what partially sighted and totally blind people can do, it is just that often it needs to be donedifferently: Books on tape or in Braille for a start. But I guess it depends a lot on the person and how open they are to adapt themselves; this is often harder for those who are older, but its not impossible.
On another note; you say it is not possible for anything to be done; has he had a second opinion?

As i understand it Macular degeneration is a slowly progressive illness with (currently) no cure. Dad will probably need a bit of time and space to get used to the idea (as will you). try not to push him too hard.

Most hospital eye clinics will have leaflets and info on the disease (tho perhaps at the back of a cupboard somewhere;¬)and may have a specialist nurse or the like. The RNIB has leaflets on partial vision loss and a website. The local authority should have someone (usually via the social work office) with a special knowlege of gadgets and perhaps knowlege of a fellow sufferer nearby whom Dad might talk to. There may be a special charity - try a google search but be warned there is NO quality control on the net and whereas RNIB will be up to date and accurate there's a lot of out of date and weirdo stuff out there so check with your GP or eye clinic before trying stuff - especially if it costs! Your family doc will have some knowlege but give him/her a bit of notice so that leaflets/addresses might be found.

On computer you'll know that windows can change size and shape of fonts and so on so they're easier to read. Dad could write a letter in 30-40 point then send it in the usual 12 or so once he's happy with the content.

You're going on quite a fascinating journey of discovery - but keep some Kleenex handy.
Tom

Thank you guys.

I dont live at home and my parents waited until it was confirmed before they even told me there was a problem. Dad is not the most adaptable of people so it is going to be very hard for him. Books on tape are a great idea and I have looked at the RNIB leaflets, they are good, I have managed to find quite a lot of information.

The idea of working on letters etc on a computer is a good one, maybe now he will learn. At the moment if he needs something typed he asks my mother or at work his secretary (he is a lawyer so is able to work without a computer!). Mum is not going to be a good person to teach him as she is only just getting the hang of it herself. She called me when she got her computer to ask how to get the cursor to move up the screen as when she lifted the mouse nothing happened! Maybe this is something practical I can actually do for them.

Mum tells me that the social services are going to visit so they are getting some practical help too. Both my parents are rather in shock at the moment, and are not really ready to think about the practicalities yet. They will get there.

It is going to be an interesting journey, with lots of traumas along the way but hopefully we will all get through it

Any other advice still very welcome!

hi again

to help with writing, why learn to type?

Some of the professional speech to type programs like Dragon Dictate and the like will produce pretty accurate stuff. If you go for the stuff costing a couple of hundred pounds the improvement in quality is marked. The freebie ones you get with a new computer tend to put you off cos they take a lot of teaching and still aren't that good. If Dad has an office there will be someone who either knows about it or knows someone who does. At that price a demo should be available.

Dad might start off with patience. It's a great way of learning mouse control and sneaky in that you don't realise that you're learning

Next time you're looking for a phone unit check the phone shops for one with a big keyboard. In the size of a normal desktop phone there are ones with big print numbers - about the size of a postage stamp and they have a memory key of a good few folk's numbers. Saves a lot of scraps of paper with obviously big writing.

Remember. The guy who runs the RNIB is himself blind. He uses a lot of the skills he learned before he lost his sight. There is always something new to try. Once the angst is let out poke around and see. It's a useful ploy which can be used a lot of times. Beware tho that a lot of folk get quite depressed at times in this situation. Dad's GP is probably well aware of this so keep him in the loop. - be sure tho that dad has given permission to speak to him/her cos it might be difficult on all sides else. HTH. Ask me more if you wish. I may not know but I can usually find out tho remember I don't know Dad and can only talk in general terms.

tom

when my dad had his voice box removed he was told he wouldn't be able to talk. it was very hard on him at first and took some time to get adjusted, but he eventually came around with the help of his friends and the family. as people get older they deal with things differantly. why not try looking into a support group for people who have lost thier sight.

Hope this helps and good luck