I had a really great visit from a local occupational therapist yesterday. I have a progressive form of cerebral vasculitis, since 1994 when I was 22. Causing an enormous range of neurological MS-like symptoms. It’s been slowed down a lot, but in the last couple of years it has made it increasingly difficult for me to control my hands, arms and legs in particular, which is making it very hard now for me to eat. I contacted my GP to ask if I could get counselling help, and also if I could speak to an occupational therapist. They have both services associated with the practice, and the occupational therapist came round at short notice yesterday. She has recommended a lot of special plate and cutlery things to help. I’d used special large foam grip cutlery for 20 years now, to help with my hands, but she also thinks a knife/fork combo would now help me as I eat one handed. And plate guards to give me a barrier to push food against as I pick up. Some of these things we will have to buy, which is fine, but she came back and along with other things dropped off a dycem sheet. This sticks on the tray or eg place mat, and holds plates sitting on it very very firmly and still. Here is a photo showing it in use yesterday afternoon, under the saucer. It helped me particularly at dinner though, as I was battling with my curry and rice one handed. Such a small thing, and very low cost to provide, but made a huge difference to me as I ate. She has also arranged for a more supportive perching stool for me in the kitchen - I sit on a stool there a lot as my husband does things, and she wanted an adjustable one with proper back and side support. Coming on Monday from the local disability centre in Dundee (where we live), at no cost to us. And she is getting a joiner to fit a rail outside our front door. She assessed me how I manage in the bedroom (inc getting in/out of bed) and the bathroom. And can offer more help in future if needed. Anyway just wanted to share this good news story. I know I was lucky to get her to come round so fast, but the help was such a benefit to me. There are occupational therapists associated with all councils in the UK, who at the very least can offer advice, even if some aids have to be bought directly. This lady came up with lots of ideas we hadn’t thought of, and was such a help.
Great occupational therapist visit - Vasculitis UK
Great occupational therapist visit
Quite jealous there - they don't appear to have occy therapists outside rehab units here in northern Italy so home visits just don't happen. Which of course is hopeless! They think the community nurses know all about such things - they don't. So pleased you got the help you need
Sympathies! Yes we’re lucky to have this service here. Though often it’s not well known, so people don’t always get to use it as much as they should. Which is why I did my post really, to say that at least in the UK we have this service, which may help more people. In my case I had used occupational therapy before, in the late 1990s when I was in Fife. I self referred myself to them then, and this was before I was properly and belatedly diagnosed with cerebral vasculitis. But I hadn’t thought of it again since, and it was never suggested to me by the health professionals. I just suddenly recently realised it might help again, so got in touch with the GP fast!
Sounds like we’re very lucky here - they’re big on care in the community to keep hospital beds for acute services. It must have been awfultrying to care for your husband without the support you needed. I know I’m fiercely independent but there comes a time…..
You’re a true stalwart - often think of you. 🌺
They are here too really, the attendance allowance is enough to pay for a full-time live-in carer apart from feeding them but that was something we didn't need until the last few weeks. Had we had a larger place we could have had a hospital bed much sooner and that would have made it easier at the end - but it happened so suddenly, in a matter of days really. And then it was Covid - half our medical wards are being kept for Covid so they weren't able to take him in while we sorted it out which is usual - when he was in a few years ago he was sharing a room with 2 local gentlemen who were on end-of-life care and too much to be cared for at home. It had never occured to me I might be left so alone. There will be 5 hospice beds soon - they have a wonderful unit in the regional capital and he did spend 10 days there and came home in a really good state for 4 or 5 weeks and there will be a smaller unit here but I suspect Covid will delay that implementation too. The doctor had just started that week, she was involved but things changed so dramatically from Friday afternoon to Monday. Wrong time and sod Covid - lots of demand for home carers as with over 500 care beds unstaffed there are loads at home. That will happen in the UK now with the requirement for jabs for staff.
What a stressful situation for you. It’s one of the reasons we’ve moved back to Yorkshire to be near family. We were only here a week and he was back in hospital - he’d been resuscitated three weeks before we moved and we had to jump through hoops to get the okay for him to travel. It is a concern the staffing situation. Take care of yourself out there.
In the UK, one is in Scotland, one in Yorkshire and both in the NHS, too far apart to share any care. So even had we gone to the effort it would still have been a struggle, The Yorkshire one works 2 days, gets one off on a pretty regular basis. She made the mistake of saying she'd not got small people so didn't mind being on over xmas. Her reward is 5 consecutive days from the 25th - 2 days clinical, one study day, 2 days clinical!
It would have been a struggle as you say. They deserve a medal for their dedication. What a blessing they came to you when they did - sounds like it was meant to be.
They had booked to come for 6 days as soon as UK quarantine requirements were lifted, we knew maybe 3 weeks ahead, if then. And within hours of them walking in the door - he went downhill. We are quite sure he waited for them to arrive.
Think I agree with you that he waited - sounds as if he wanted it that way. My DIL’s father passed away two weeks ago in Cyprus where he lived alone. He insisted on staying there when his wife died nearly three years ago (before he became ill). The three daughters (2 in Australia 1 in England) then couldn’t go because of Covid. Funeral arrangements had been made prior and many friends attended and took photos of the flowers for them. It was a burial ( videod by the funeral directors) he just wanted to go and be with his wife. Would not leave to stay with daughters said he was afraid of flying….
Will you go to England for Christmas?
No - not sure what the nurse daughter is doing but she's a vegan anyway. Vegan Christmas food really doesn't appeal!! T'other one is working 5 days on the trot from the 25th so they will do big xmas on the 24th and her husband will spend the 25th with his 84 year old, slightly demented, aunt and his son who will then go to his mother and then to his girlfriend. Two days of big xmas on the trot is just too much for me ;)I'm staying here for the moment - the thought of the weather in the UK is just depressing!! The only place I could live and have more than one friend/family member easily accessible is Dorset/Devon - couldn't afford that and it is still a long way from the girls so a bit pointless. Things will change - I'm aware of that, But in no hurry.
Don’t blame you at all for avoiding the UK weather.
cycli was saying how nice it was yesterday at his place near Barnard Castle - my daughter went for a run in Whitby despite wind and rain and got home with wet feet and cold!
Have to say we have glorious sunshine most days - it is getting cooler mornings and evenings but can cope with that….. my friends said I would freeze after living in Essex for so long but I joked that climate change gave us weather in Yorkshire equal to Essex and they would be too hot! I haven’t been far wrong as yet!
I’m so pleased she was such a great help to you. I hope these improvements give you a better quality of life.
I agree re occupational therapy, my husband has their service when GP referred him last year. You don’t realise what help is out there for those that qualify. After a home visit one time it must have been noted by our GP that we were struggling and was very surprised when occ health arrived on the doorstep the following day. He also gets home physio, district nursing and podiatry services. I’m pleased for you as it helps maintain a level of independence you probably wouldn’t have. 🌺
Possible relapse, trouble seeing Rheumatologist.
Has anyone been to an occupational health medical?
vasculitis / renal fialure with dust exposure in your worklife .
Mixed feelings about recent Manchester Royal appointment
