I’m on here now and then expressing worry, stress and anger - mainly ‘thanks’ to the NHS who’ve let my mum down repeatedly. But I wanted to share some positive news…
My mum is now moving her ‘stroke leg’ 10 months after her massive stroke. It happened during a visit by her NHS OT and physio on Tuesday. They were flabbergasted as they were on their last visit to her, thinking she wasn’t improving. A local rehab unit also removed her from their register on the same basis.
She’s also stable in regards to infections - we’re paying for private respiratory physio (former clinical lead at the stroke units in the local NHS Trust) who has given us a new perspective on, and support for, her lung health. Something that the stroke unit failed to help with.
A friend who’s a senior radiology nurse suggested it when we had a chat about aspiration pneumonia. Also, people who haven’t had a stroke but suffer with the same issues have resp physiotherapy. I’ve now joined forums for other disabilities such as cerebral palsy to see what other people are doing.
You must be so happy. I had been told I would not walk again. I remember the first time I moved my leg. At the time I would continually send messages to my leg to move. One day it did - one inch off the bed. It was a fantastic feeling - one that most people will not experience and will not want to have to experience. What made it better is that my mother was visiting at the time so I said to her “look what I can do” - one inch up, one inch down. She then got just as excited.
Hopefully the physios will now follow up and get your mother on her feet.
Janet
@EMG72 thats great to hear. You must all be thrilled to see this progress. I really hope she now gets the physio & treatment she needs to help her continue progressing.
3 years after my stroke (a nurse told my wife not to expect me to make it through the first night in hospital and then wasn’t allowed to see me for a week due to Covid restrictions) I too am paying privately for physio. I found a neuro physio who understands the connections from brain to body parts. She’s better for me than the NHS physios simply because she hasn’t as much workload pressure.
I can walk up to 1 mile with my walking stick but my head is always fuzzy so I won’t drive again. Apparently I’m making progress but it’s frustratingly slow, then again I’m still alive so every day is a bonus. I naturally have a positive view on life which definitely helps and I realise that the consequences of having a stroke 10 years earlier would have been much worse.
Hi EMG - Just for the record, did this or how did this incident change the views of the NHS OT and Physio and the Rehab unit? Did they accept they were wrong and that your Mum should receive more support from them or are they happy to have signed her off as you are managing this privately?
At first yes, and they decided to reassess their approach. But because my mum was too tired when they got round to seeing her again last week, she wasn’t able to engage in physio so they’ve struck her off their list for now. But they said that if there’s more change they’d get involved again.
It’s ridiculous as they visited in the morning which isn’t a good time for mum! I did tell them that.
Yes, unfortunately they work to their timetable and if as was the case with your Mum you are not “fit” or able to take part that is it. You lose the opportunity - exactly the reason why Mum got no physio, SaLT or anything. Every time they tried to test, Mum was unable to demonstrate what they look for to offer support. Even when you go back when there has been a change or improvement, because of the waiting times, by the time assessment takes place you are too weak or lost the ability to demonstrate. That is why we no longer hope for anything from the NHS. Hopefully things will improve for future patients. It’s too late for Mum, she is recovering on her own steam.
