Haven’t been on here much but know this forum is going to be a mental lifeline at some point - thank you all in advance.
Mum diagnosed CBD in Dec 2020 but symptoms in left hand about a year before that. She is now very wobbly but still mobile, left hand useless, right deteriorating. Problems with urinary continence, wears a pad now day and night. Memory has deteriorated massively over last 6 months, now telling me the same thing within an hour, or forgets who did what the day before or something you have told her. Anxiety levels increase for her because of this as she doesn’t understand what is going on -she is 83 and knows she has CBD but in denial - surprised when I tell her some new issue is linked to her condition , she is always saying she will get better 😢 Swallowing getting worse but can still eat normal food at moment. Speech is really starting to deteriorate now with lots more choking /coughing, hate that poor love.
She is currently in own house with helper coming in to dress her, my daughter is down with her at moment between jobs and hoping they will both move in with us by February. Currently converting garage to bedroom with wet room facilities.
Not sure why I am writing all this - just bit more of where we are up to. Different county to where she now lives so will need to get new assessments and teams involved. Can’t be worse than Berkshire though who have pretty much left her to it. Anyone recommend a decent neurologist in Essex region - we can travel? Currently seeing one in Berkshire but was meant to see her again in Summer 2022 and still no appointment sent, given up on him as she will soon be with us but not finding any good ones via web search.
Thanks for listening to my essay anyway. Love to all you wonderful people.
Hopefully I can give support to you all as well.
Andrea
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Araucana
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Welcome to the forum that no one wants to be on - but we all find so helpful! Do have a good look round the site as there’s loads of useful information. As the disease progresses so differently you’ll always find someone who has useful experience to share. My mum is a bit older than yours and in a nursing home now because we have no space in our house and she got to the stage of falling so often and waking in the night that she needed 24hr care.
In terms of neurologist all I can say is that we haven’t seen one for about three years….I’ve been wondering whether to chase that up, if only to get the GP to pay attention.
Hi, thanks for replying. My mum is having falls but still not too many. We had several instances of her falling and being taken to A&E and me rushing down at 10pm at night taking me two hours to get there and then us being in A&E until 6am in morning, nightmare. We will have space for her here but the nights will be interesting, at the moment she sleeps through reasonably well. That will probably change. I am now wondering what the point would be of seeing a neurologist for a check up - what more can they tells!
My husband died last August of PSP after being diagnosed about 5 years ago. He had shown symptoms for several years before and it was actually myself, after doing research, who suggested to the neurologist what was wrong with him. With support I cared for him at home and in the last two years stopped struggling to take him to neurology appointments which completely exhausted us both and and aided us in no way.
We were lucky in that we had wonderful local support from the hospice outreach team, our GP, the local speech and language, occupational and physio neuro team members and also the district nursing team but my daughter and I did have to fight at times to get this support set up and ongoing. Then our focus was on making my husband’s life as interesting , calm and happy as we could until almost the last couple of months of his life.
We knew there is no cure or real treatment for PSP and I assume CBD also, just symptom control which has to change and adapt almost constantly as this horrendous degenerative neurological disease progresses.
I wish I had opted out from putting my poor husband through numerous distressing brain scans and tests which confirmed very little, sooner and just focused on valuing more our last precious years together.
Very much my personal view, strongly felt! Do hope I’ve been a bit helpful.
That makes complete sense. Unfortunately my mum will wonder when she is seeing the neurologist again- there is nothing more he can tell her and as you say it is just management really which with a bit of research GP and myself can do 😁. Mum seems to think he will suddenly change his mind and tell her it’s old age and she will get better in a few weeks 😢 she is starting to forget most things so I will just tell her we are waiting for an appointment I think. We shall see.
Welcome to you and your mum, sounds like you’re doing a good job getting things in place.
Mum moved counties last year when she moved into a nursing home, she has PSP. I had to really push to see the neurologist consultant, so be prepared to chase it up. He had nothing really to offer other than being able to link us with the Parkinsons nurse who is great. I actually asked him if he would be involved in mum’s care going forward and he said “no, I don’t expect to see her again.”
I have found the Parkinson’s nurse, speech and language therapist, physio and sometimes the GP to be most helpful.
Thank you. It all feels a bit overwhelming the closer she gets to moving in with us. I currently work in a school 8 until 4pm so know I am going to have to adjust hours etc as she gets worse. For now hubby works at home and I can get her up in the morning and ready for the day. That will only work for a short while I suspect. Funnily it is the speech and memory deteriorating that is getting to me more at the moment.
Araucana, It sounds like you are doing everything right and preparing for the further decline. That's all we can do - try to stay one step ahead. Ruth's decline has been fairly steady so we have had warning. Advice (but you probably have it covered): Ruth's life is much improved by being on anti-depressants (Sertraline 150mg); we have not seen a neurologist in years as there is nothing they can do; in public sector ~Parkinsons nurse has been great, also the local hospice - between them we get all the equipment and rails etc we need; we pay for private carers (£15ph) to come in every week day to give me a break. Sadly it only is getting worse and for some time Ruth cannot be left alone at all.
Such a horrible disease. We will look into carers when mum comes down- I will book an Assessment with Essex social care, but doubt we will get support for carers. Mum is still reasonably mobile, it is the fine motor skills and risk of falls that currently worries us, so will start at low numbers of hours if at all to start as someone is normally at home all day and I will help her getting up and going to bed for now.
I will look into a Parkinson’s nurse, that sounds helpful. Not on the antidepressants yet , she is still quite positive but the worse symptoms get and we confirm it is part of the CBD the less positive I know she will be, understandably. We think she is about 3 years in so a good few years of deterioration- she is a frail 84 this year.
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