My 83 year old independently living Dad had a right occiptal stroke last week which knocked out his left field of vision. Called the GP who referred to stroke clinic the next day. Confirmed by CAT scan on Weds and brief session wtih consultant and discharged with blood thinners and statins. Full stop. Not having much idea what we were dealing with, and consultant and GP generally implying he was fine and I was making a wee bit of a fuss about him. I'm pretty good on convalescent care and have put on a strict regime of rest and gentle exercise and good food and tlc and he's now reasonable stable in himself. But quite a long way from being able to live independently. And I'm realising there are various subtle symptoms beyond just the hemianopia (loss of vision), including balance, some language problems with the written word, inability to judge distance, difficulty orienting in time of day. Really want a proper assessment, ideally at home, of his neurological deficits and some focused advice on managing them to regain independent living. I've just spent almost the entire day on the phone. The GP can only access community OT and said that was mainly house assessment for grab rails etc (already in place because Mum was disabled) and no specialist stroke expertise. The consultant we saw last week is now on holiday. The stroke clinic co-ordinator said unless the symptoms were new since the "clinic work-up/assessment" no joy, but he never had a proper workup in clinic and we were just in shock at that stage anyway. As you are. Consultant secretary said only stroke patients who had been inpatients could have rehab, if you've not been an inpatient you can't have it. I spoke to the Sensory Deficit team with the county council who have offered an assessment but their unfamiliarity with the term homologous hemianopia gives me little confidence that their expertise is specialist enough. I have a medical background myself (way back) and am generally pretty good at tracking down practical solutions, but this really has me stumped. I'm absolutely sure there is specialist expertise on this out there, and that it would be really helpful for Dad really soon. But how do I access it? What's the magic button? What's it even called?
In retrospect I'm pretty unimpressed that the consultant never even asked about his living arrangements and potential vulnerabilities. Feel we've just been dumped to get on with it. Oh and I have a full time job which has given me compassionate leave for a bit, but I do need to get this thing moving.
Anyone got any experience that might help? Thanks everso.
So sorry to hear of Dad suffering a stroke. Please say hello from me.
when I was bitten in December 2015 I happened to live in the Colchester area and there was an excellent stroke unit at the hospital.
Five physios worked on me for five days and got me walking and so on. Then home, where there was an early discharge team who visited me daily for six weeks. All excellent. But then nothing. I needed years of care but there wasn't any. Even the stroke association did not cover my little corner of Essex. I searched around and found a physio who ran weekly classes at the village hall. I found a voluntary group who would take me two times a week and my church had some relaxation sessions.
as grateful as I was for this help, it struck me very firmly that there really isn't a follow up. My GP was patient and helpful. The more I progressed the more I grasped that this is Cinderella time. There isn't much help for post stroke issues. There isn't even a word for our disability. Stroking lasts less than a day, but the aftermath lasts years.
the help that I did receive was dependent on my week in the stroke unit.
When the pandemic got its grip, I suggest that stroke takes an even more sparse level of care.
I do not like writing this tale of woes, but I think you need to grasp that there is no magic button. Treatment and help varies from town to town.
Every stroke is different.
Recovery is slow. Very very slow.
you are spot on when you suggest that there are many issues beyond a loss of sight. A bit of Dads brain has been damaged and his brain is busy trying to repair the damage and failing that, working around the damaged area.
I would suggest you try the stroke association to see what might be on offer.
I note that Long Covid is very similar to post stroke ailments. Maybe we can benefit from the Long Covid findings.
You could go to A and E and say that there are small new signs of your dad's strokes after he left hospital there will then have to have him re assessed and at the same time ask about the follow up with the stroke team there should refer you to them. I am lucky that here in nelson we have a good stroke team based in the town I live. But do push you GP if in doubt ask for a second opinion all the best des
Thanks Colin - that's helpful (in a morbid sort of a way!) I kept thinking I must be doing something wrong in not being able to find the help. Well meaning friends and family say things like "why don't you just ..." - all of which I have (of course) done at least twice already, but it's exhausting explaining it again and again ...
It sounds like you do just have to throw whatever resources you can muster and find your own path. Reminds me of Machado
“Wanderer, your footsteps are the road, and nothing more; wanderer, there is no road, the road is made by walking. By walking one makes the road, and upon glancing behind one sees the path that never will be trod again. Wanderer, there is no road-- Only wakes upon the sea."
I seem to have ended up starting a blog. Partly to keep friends and family informed. Partly as a personal record. Partly in case it's helpful to anyone else sometime.
https://jerrysrehab.com/
And also because we've refined what it is we're actually looking for now - if anyone knows anyone who might be interested in the role. https://jerrysrehab.com/we-are-recruiting/
Have arranged privately a couple of sessions with a neuro physiotherapist and an assessment with a neuro Occupational Therapist. And arranging for him to come and live with me until we get the support at home sorted out.