hello, I’m new here. Please help if you can

[Karen1981]

I am the daughter of Christine

We are battling to get a diagnosis and have had no support from

Anyone despite being 4 years in

My mum cannot mover her right side hand or leg effectively and has alien limbs and rigidity in her leg causing multiple falls and a fractured arm that required surgery a few months ago

She had slurred speech and difficulty swallowing and behavioural changes

She was unfortunate to see a neurologist locum 3 years ago who looked at the wrong patients scans and showed us 3 bulging discs in the neck and referred her for spinal surgery . We waited 2 years for this believing that was the issue

I was constantly phoning to say she was getting worse and trying to get help from the gp for physio etc but they couldn’t help as thought it would make it worse

When she finally saw the neuro surgeon 2 years on he straight away said her actual MRI didn’t show anything to suggest she needed surgery and that it was clearly neurological and she shouldn’t have been referred to him

This WASTED 2 precious years of not getting help in any way whilst the disorder progressed.

She has now seen a neurologist after I battled to get an emergency appointment and since had a nerve condition test and Meg as they thought it was motor neurone disease. This has now been ruled out and they think it could be cbd or psp although her symptoms suggest cbd.

Pls is still a possibility although rare

She is currently in hospital after having seven falls in a 24 hour period and it has been a battle as no one seems to understand or communicate in hospital. They seem focused on freeing up a bed and think putting a bed and commode in the living room is the answer to all our worries

We are all including my mum feeling like no one cares and everything is always a battle

The neurologist she saw back in December referred her for physio, speech and swallowing, OH but we still haven’t heard from them only the ones in the hospital currently

We have adapted her house ourselves with stair lift, rails everywhere, downstairs toilet and as she is getting worse that still isn’t enough. She lives alone and we go most evenings and weekends and do all her cleaning etc

Any help, advice support is greatly appreciated

They have discussed between themselves if she could go to a neuro rehab in the short term which I think may benefit her but are now saying she doesn’t meet the criteria as she has failed the cognition assessment - not really clear on what this means

Needing some advice on where we go from here

And trying to look at options, will she need 24 hour care or can she stay at home as she wants to with support and what might that look like, entail and who would sort that out? Would she qualify for Continuing health

she is just on a general ward and I feel that as she isn’t diagnosed the people assessing her don’t really understand and she isn’t getting the right support in there

[AliBee1]

Hi Karen. I am so sorry to hear all the problems that you are encountering. Can I ask if you are in the UK and if yes whereabouts, without giving an address ? AliBee

[Karen1981 in reply to AliBee1]

We live in the UK in huddersfield

[AliBee1 in reply to Karen1981]

Thank you. It would be worth contacting the PSPA association to see if they know of any neurologists who specialise in PSP, CBD, MSA. The one my husband was with is in the south. Good luck and big hug. AliBee

[Karen1981 in reply to AliBee1]

they suspect it’s cbd as it effects one side

Her eyes are fine

She’s had MRI, nerve conduction test as they originally thought it was ALS motor neurone as the symptoms are the same

[WifeLilyRose]

I am so sorry about what you are going through with your Mum. My late husband died of PSP in 2022 but it took about 5 years to get a diagnosis. In fact it was myself who suggested to the consultant neurologist that I thought that he was suffering from PSP. It was considered that he had early Alzheimers or Parkinson Disease for a long time but I did my own research through the Alzheimers' Society website, looking up rare dementias. There I read about PSP and CBD and also discovered the PSPA who are amazingly supportive. Caring for a sufferer is very hard and each PSP journey is different and unpredictable. I was constantly having to explain my husband's symptoms as most of the staff in our local hospital, where he was admitted with pneumonia had no idea what PSP was. I switched GPs to one who involved the local hospice outreach team for the last year of his life in giving myself and my husband amazing support. Without that, I don't think I could have got through it. There is no treatment or cure for PSP but symptom management which will need frequently reassessing, is what is needed . I live in Greater London and at that time [ not sure if it still exists ] our GP put us in touch with our local neuro support team [ physiotherapist, speech therapist, occupational therapist ] who were very caring and supportive. I think it was the hospice nurse who helped my husband get CHC funding ....that is a whole other battle to fight. I do hope this long post is helpful. Use this forum and also join the PSPA who are unique in making you not feel alone and isolated. It is SO important that you look after your own health. Oh, also the local carers' network group was very helpful in supporting my husband to get attendance allowance and other benefits of which I knew nothing.

Sending you my best wishes. You are not alone. Susanne xx

[Karen1981 in reply to WifeLilyRose]

Thankyou so much x it’s nice to be heard at last and not to feel alone x I just feel so sorry for my mum as it’s not fair but I will keep on fighting all the way for her

It shouldn’t be a battle though. We should be spending our time con g to terms with it and looking at how we spend quality time together

I really appreciate your reply xxxxxx

[Billy2002]

I'm so sorry to hear this. I'm from Halifax and have had a very similar story to yours with my former partner 4.5 years we waited for a diagnosis after under going all the same test you have mentioned. He got his diagnosis from the Royal Hallamshire hospital, Sheffield. Ask to be referred to them they have a neurologist hub and specialise in PSP etc. This took them 20 mins to diagnosis.

[Karen1981 in reply to Billy2002]

Wow

It’s scary isn’t it

Makes you wonder if they don’t want to diagnose it as they know it will cost money for the care needed. It makes me sick

How did you get referred to Sheffield please as I will defo look into this if that’s the case x I mean they must know she has every symptom and there quite pronounced too so it should be obvious

Thankyou so much for this information and all the best wishes to you x sorry to hear about your husband xxxxxxxx

[Billy2002]

Eventually the neurologist at Calderdale royal referred him to Sheffield, however once he had been referred I had to constantly ring his secretary chasing this appointment, telling them he was deteriating all the time.. Then I started to contact Sheffield by phone and just became a thorn in their side. It was a battle from the start. Once they had diagnosed him we was allocated a 1. 1 nurse. Who You can ring or email at any point with any questions you might have about anything at all........ Hope you get answers for your Mum - it's pure torture 😢 Good luck Karen xxxxxx