Activities

[forkeith]

Hi, I work for a local charity and we visit people with sight loss. A gentleman I am due to visit next week has PSP and it has severely affected his sight. His wife has asked if there are any activities I could suggest for her husband given the restrictions PSP has imposed upon his sight (particularly with regard to eye movement). I wondered if anyone could suggest anything based upon personal experience or experience as a carer. With many thanks for your help.

[jillannf6]

hi i have psp and cannot read any more

any chance he would like to be read to???

i tsi a matter of what time u wnat to spend with him and as his brain will sitll be intact and functioning you need to be aware of what h e would like ot do

sorry i cannot beof mroe help

lolJill

[forkeith in reply to jillannf6]

Hi Jill

Many thanks for taking the time to reply - I am signing him up for the local talking newspaper as this was something he used to enjoy reading but you are right, I need to spend time talking to him and finding out what he can and wants to do. As yet I have not visited anyone with PSP and I know that his needs will be very different from someone with 'standard' sight loss so I was hoping to go in with as much information as possible.

Many thanks again

Gemma

[forkeith]

Doh! Replied to myself! Will try again!

[jillannf6 in reply to forkeith]

HI gemma

it si good that tyou r going to see a man with PSP

it could be a new friendship for u him and hsi wife

klol jIll

[quickgel]

Hi Gemma, it's not an easy one without having some knowledge of what interested the man prior to developing PSP or what stage he is with the disease, a chat with him/his wife could resolve these issues. If he read a lot then reading a book on topics of his interests (talking books might help), or extending his interests into areas where you can have a discussion on topics of common interest. If for example he enjoyed crossword puzzles then you could work at one of these together, and he could occupy some of his time resolving unsolved clues when you had gone. If he played chess, or card games this may be a possible avenue to explore, it all really depends on the stage he has reached and his powers of concentration. Trying to learn something new may prove more taxing than relaxing when having to cope with the effects of the disease itself.

I know my wife particularly enjoyed evenings spent with a friend who read lighthearted and amusing poetry to her, although it was not something she would have done when well.

Sorry I can't think of anything inspiring but hobbies that involve physical activity become increasingly difficult when sight, balance and muscle control become unreliable. All the time hearing and intellect remain intact stimulus will necessarily revolve around activities involving sound i.e. speech and music and for the person with PSP speech may also become difficult later on.

This may all sound rather bleak but reading the contributions on this site by those living with PSP show there is a lot of living to be done. Perhaps getting a computer and contributing to this site would also be a good activity to start with. One bright light on this chaps horizon will be your visits I'm sure. Good luck and best wishes, Jerry.

[carolinesimmons]

In the states, the Association for the Blind will provide tape recorder, ear phones, books and magazines on tape for those whose limited eye movements prohibit them from reading. This is all free. In the UK I have no idea.

caroline simmons

[jimandsharynp]

forkeith, This is a dicey thing with PSP (vision). Depends on the patient. Some people use audio books but those don't work for everyone. Because of the cognitive issues with PSP following a plot either on audio or even TV is difficult for some PSP patients. I know of a man who was an avid reader before PSP but after his wife reading to him for awhile due to eye issues he stopped her reading, possibly because following a plot became difficult. There are prism glasses that work for some people. Fortunately my wife, five years into PSP, isn't having many eye issues. Eyes are dry and water but vision is pretty much ok except for occasional double vision. We bought a HUGE screen TV and it has been a real blessing (70" TV). I'd also try music from his era. If the eyes aren't working usually the hearing is. If he liked sports listening to them works without the visual in some sports. Hope I helped. Jimbo

[forkeith]

Thank you very much everyone for your helpful and kind replies. I have since visited this gentleman and learned lots. I have been able to come away with a few solutions and we'll take it from there. He has excellent support from a truly wonderful wife and I have urged her to join PSPA - something that's on her very long to-do list. It really did help joining PSPA first and making use of the forum so thank you once again - I do hope this reply is available to everyone who took the time to reply (not used to this type of thing!). :o)