Hi Minnie
Thank you for your suggestion. I did contact ARNI straight after reading your message, asking about personal trainers in my area, but havent received a reply yet.
Regards
Paul
Hi Mahoney
I have a few avenues to explore privately but have yet to see anyone.
Just had a letter to tell me a stroke nurse will be calling me next week. Not holding out any hope there as his last visit seemed to be a paper exercise to tick boxes.
I am trying hard to stay positive and proactive in my rehab, but it is not easy with little professional guidance.
Regards
Paul
I think that is unfortunately the going rate - I contacted a couple of local neuro physios to get an idea of price and they both quoted ÂŁ80-90/hr. My friend is a neuro physio and that is also what she charges.
1 Like
Not much luck with this ARNI thingy. Contacted them as you suggested asking about availability in my area and 12 days later still no reply. 
Try them again. I donât think they have many staff working there (and Christmas came in between). Try ringing them & sending a back up email just to be sure.
Hello
We were told repeatedly that John could not swallow and was incontinent. Despite being told I would kill him by choking, I kept trying him with drops of water, flavoured to tempt him and he enjoyed so he persisted and got his swallow back. The speech therapist made me sign all sorts to say I knew the risks and could cope with choking. She was amazed when I finally got her back to see how strong his swallow was.
I was told he was incontinent, but the only reason he needs to wear a pad is because they wouldnât give him the therapy needed to enable him to move to a toilet. He knows when he needs to pass urine/move his bowels, but lack of physio means he canât stand. The glutes are too weak. He has been forced into using a pad. Complete disregard for his dignity.
The consultant on seeing John always asks about support from community therapy and my response is always the same. NONE. Heâs horrified but nothing changes. If you can persist, be annoying enough, I hope you get the therapy needed. We have been left completely to cope alone.
Margaret
Hello Margaret,
Youâve had a really crap time. Fortunately my experience has been very good. Do you have a stroke group in you vicinity? Either from the Stroke Association or a local self-help group?
My experience of our own Stroke Association has been great, lots of good advice, help and hints about how to cope and recover.
I was blind, mute, paralysed and incontinent but I can now see, talk (badly, I have aphasia), move around on a motorised wheelchair ( i canât walk but I can transfer to a toilet and a chair). NEVER GIVE UP!
1 Like
Hello
Thanks for the encouragement.
You are right. The best advice is NEVER GIVE UP.
Our local Stoke Association helped a lot in the first year.
We had help from professionals at first. They said John would only live 2 years.
In the past year Iâve had to remind people we are still here.
However, I recently spoke to someone whoâs relative had a stroke 20 years ago and is now ready to live independently. There is always hope even if there is no help.
We keep going and wonât give up.