How bad do visual difficulties get?

[georgiemoon]

My dad has recently been diagnosed with CBD and we are devastated! I honestly thought he had PSP because his symptoms started with visual problems and this has continued to be one of his main problems. But he has an 'alien limb' - his right arm and hand -, which I know fits with a diagnosis of CBD. I'm just worried about how severe his visual problems may get as everyday he says that his eyesight is deteriorating even more. He stopped driving, reading and writing over 12 months ago, and now doesn't mind what we put on the tv because he "cannot see it anyway" - especially if it's fast-moving. Sometimes he says that he can't make myself and mom out clearly. He does not move out of bed often, cannot get to the bathroom, and cannot wash or feed himself anymore - among many other things -, partly because of his poor balance and co-ordination -, but also largely because his poor vision makes these tasks impossible! Other than listening to the radio, his visual difficulties don't allow him to occupy his mind with any other activity. I'm just concerned about how much his vision will continue to deteriorate....will he lose the ability to see completely? What kind of things has anyone else found that there loved ones can do to occupy there mind and for even a little enjoyment, even with these visual difficulties? He is so down and fed-up, and he must be so bored. This terrible illness is the only thing to fill his thoughts hour after hour. Has anyone any advice? Thankyou x

[messier]

So sorry to hear about the situation. There's often cross-over of symptoms. My mum started with left arm and hand problems but in the last year started getting visual problems. She has to look at things at the right angle but fortunately can still read - if rather slowly. I don't know what she'll do if she loses that as the nursing home don't provide much to occupy them.

[daddysgirl1916]

Sending you and your family my love and prayers. I lost my beautiful father to CBD one year ago. His vision never fully went, however, his eyes were constantly dry and irritated. We bathed them with cooled water from the kettle and cotton wool. My dad was fed up aswell. He never watched tv in the end, I think this was due to what was going on in his head though. We never knew how he felt because it stole him of his facial expressions. Talk to him, cuddle him for reassurance. I would constantly carry on the banter with my dad, although he couldn’t smile his eyes did, so I knew he could understand me. I miss him dearly, hope this helps. All the best xxx

[Richard33]

Georgiemoon,

The obvious way to keep amused (that Ruth likes) is audiobooks - specifically Amazon's Audible. We have found so many great books beautifully read. Do not go for anything highbrow- just look at the Amazon Top 10 and pick something. Probably cheapest is to have a monthly subscription - starts a £7.99 a month. Another trick is to buy the Kindle edition and then add Audible - often way cheaper than buying the Audible version direct.

You can play it through any smart phone / tablet but make sure you have a Bluetooth speaker so that the sound is clear.

Richard x

[Martina_MP]

Could there be a separate visual problem, such as cataracts?

[Hidden]

Mom had PSP ... fortunately she had cataract surgery before she was diagnosed. Eventually double vision became an issue and was frustrating for her. l think it contributed to her poor balance and a lot of her falls. Sending hugs... Granni B