This is just a reply (edited), not an original post but readers may find it of interest. As far as I know all replies are public and can be viewed by any Enc. member.
"To know we are still useful despite our disability is a big bonus. I used to open the curtains on the ward and make my own bed and the staff appreciated these things. Showing appreciation makes a big difference. I don't know if they would have let me push the tea trolley but I really fancied having a go.
Once I got back on my feet and could be trusted not to fall I walked up and down the ward for an hour or more a day. This constitutes at least a mile or two. It was so out of the ordinary that they didn't quite know what to make of it. I explained it was good for my mood, my metabolism and good practise.
I'm in the UK, where are you? Through my GP I was contacted by a social worker who arranged support. (physio, psych, diet, speech therapy, blue badge, RADAR key for disabled toilet), hidden disability badge and lanyard. All this had been promised by my hospital doc. and we waited for about 18 months before we realised he hadn't bothered to arrange it.
He was not someone who could be relied on at all. Once all the attention and marvels had died down he completely lost interest. He had a private practice too and it seemed the NHS didn't feature heavily on his mind. A nice office, plenty of fame, a secretary (who seemed to shield him from contact by phone and not pass on messages) and a parking spot were the attractions it seemed.
When we finally got an appointment he was offhand and showed little interest. It seemed we weren't the only ones to feel this way and on one visit we were given a feedback form to fill in. He said all doctors had to be monitored in this way but I felt he was lying again. He seemed to do the minimum and all his promises were empty ones. After he initially told us he would arrange aftercare he did nothing and we waited 18 months, assuming we were in a queue. It was only via a social worker that anything was arranged ........
He would ask personal questions about our opinion of the treatment and other things, especially when I was coming round and vulnerable. I became wary of him fairly quickly. I thought follow up would be automatic, with scans and other tests but there was nothing. I have made a remarkable recovery over the past 4 years due to the NHS and got on well with my nurses etc.. Where was the interest? Some medics can run rings around you - most staff are angels.
My immune system doesn't function much now and I get repeated infections which can lead to fever and sepsis. I've been to hospital by ambulance several times due to seizures and infections, on IV penicillin etc. All these are very wearing and I have to be very careful where I go and close contact situations. For them it may just be a tickly cough, for me it could be several weeks on antibiotics. I wear a mask when indoors among strangers e.g. the GP waiting room.
Fatigue - when first released a walk to the end of the road laid me out for a couple of days. The sights and sounds were too much stimuli. Gradually I got better and better and can now do a country walk/hike as long as I allow for a few days rest afterwards. Fatigue can strike even when I have been taking it easy and complete rest is all I'm capable of. Putting out the refuse or tidying a cupboard can be enough for one day.
Brain damage affects the specialist areas of the brain that deal with memory, the senses, decision making and all the other functions. A scan reveals which parts are damaged and so the after effects can be predicted. Packing a suitcase is incredibly hard as I can't keep track of what's in and what is on my 'to go' list. I have hospital bag ready in case I need to go back in but can't remember what's in it.
One essential item I discovered is pain relief. I have a permanent spinal fractures and take morphine and Paracetamol as and when at home. Staff would always refuse to give pain relief, only docs can prescribe it. I could have walked across the road and bought things that were denied in hospital. Since then I smuggle pain relief and morphine in to the hospital so I am not in agony all day and night. Most days I don't need it and can manage.
I can't taste anything, all foods and drinks are equal, bitter and sweet are the only tastes I can sense. This is unlikely to change as the brain regions (Temporal Lobes) dealing with this are goneor damaged and won't return. All foods look attractive but just taste like mush - this is an improvement. initially my brain couldn't figure out tastes at all and everything tasted like sewage (not nice!).
As you have discovered the Enc Soc is invaluable. If your father was active, a decision maker, creative, a DIYer, sociable, like to cook etc. he may find life intolerable. Having to relearn the basics of living puts you back in the world of a toddler. Shaving and brushing my teeth were a novelty and I was certain the face in the mirror was not mine. And who bought all those bizarre clothes in the wardrobe and since when did I like listening to pop music?
I find the short videos on YouTube very interesting - who built the Pyramids etc. and the US traffic stops are pretty good. I have to rebuild myself and pick up the pieces that are still there. Things from my youth like the Rolling Stones videos are good, plus some jazz etc. When a friend comes round we play improvised guitar together and have a laugh.
I can feel like a disabled war veteran at times, nobody can understand what I have been through, some think I can 'pull myself together' (that's funny and very descriptive - but no I can't). Friends disappear as they can't cope with the new me; but I often did the same when my associates were unwell. Finding new things to do is difficult, some are too much of a challenge if your awareness is limited, you can't organise or lose track of things.
Anyway I could go on but need a break now, I'm tired and I may not be saying things that are relevant. Enc. is a whole new world, I'll watch the birds on the bird feeder and look at the trees. Hurray! I can do some stuff!"
Best Wishes, G2
Lesser post-enc after effects - misophonia 
Loss of appetite
