Parkinson's plus -PSP

[Hopeandglory]

My mum has a confirmed diagnosis of PSP and I am struggling with everything at the moment, she has rapidly declining cognitive ability coupled with being wheelchair bound, fixed gaze, chocking with food and drinks, apathy and an inability to use her left arm and hand or do anything for herself. She was diagnosed in November and we have had no input medically since then.
She is in a care home but I feel isolated and that I am failing her

So sorry to hear that. You are not failing her. If she is in a care home she is in a safe place.

Have you contacted Parkinson’s UK?

Has she been seen by a multidisciplinary team - Parkinson’s nurse; physio; OT; SLT?

Thank you for you response, following a hospital stay for a chest infection she was seen by SLT, who recommended stage 6 food, the consultant who diagnosed her with PSP was on ward rounds and as he passed by he told me the MIR she had a few weeks ago confirmed the diagnosis, that is the total input from medical specialists. Her GP told me over the phone that she has not come across the disease before. I see her every other day and watch the deterioration. She has referrals to neurologist and old age psychology but we have been waiting over 6 months for appointments while dealing with a rapidly progressing terminal illness that is relatively unknown. The care home are very good but she is very unhappy, random crying, agression , fixation and paranoia, along with hallucinations. I want to know what stage she is and is she eligible for CHC, all things that specialists would already be able to help with.

I’m so sorry, this must be horrible for you.

Is she self funding, and is it a residential or nursing home? The home should be able to help with CHC; you are probably aware there are two types of CHC funding, one for long term care and a fast track CHC for those nearing the end of life. Have you looked at the Decision Tool - you can download it. Unfortunately CHC funding is hard to get - it’s way underfunded and the criteria are based on nursing/medical care needs rather than social care needs.

I hope you find a supportive and helpful group of fellow travellers.

It is rare but I worked with people with Parkinson’s and came across it a few times.

Contact Parkinson’s UK and find out what support would benefit your mum.

Find out if your area has a Parkinson’s nurse.

Choking on food does not necessarily mean re-referral to SLT but if she is distressed by it; is losing weight; having chest infections she should be reviewed. Her swallow will deteriorate and should be monitored.

I’m really sorry. You should have more support than this.

Actually, still look at Parkinson’s UK but phone the PSP helpline and ask for advice.

www.pspassociation.org.uk/information-and-support/just-been-diagnosed/

Thank you all, I am looking into CHC but feel so frustrated by the lack of NHS support, I think she is mid to late stage 3 and I should have been guided by knowledgeable staff regarding finances, palliative care etc.

After doctors initially suspecting Parkinson’s my dad was eventually diagnosed with PSP. We found that most doctors hadn’t heard of the condition which was frustrating. PSPA is just brilliant and we found their support invaluable, there is also a chat forum that my mum (who cared for dad at home) found really useful.

https://www.pspassociation.org.uk/information-and-support/

💐

I’m so so sorry to hear of your mum’s diagnosis. My dad died of PSP nearly 10 years ago and was diagnosed 5 years prior (after being misdiagnosed with Parkinson’s as so many are). He was diagnosed fairly early on I suppose. The PSP association were really helpful. I’d probably speak to them as they are specialised and Parkinson’s is really a very different illness. In terms of CHC funding, we had it - but it was a battle - I think it is definitely worth applying for. This is the sort of thing it’s designed for. My knowledge is obviously very out of date now on CHC - but we had to push push push. The doctors really can’t do much unfortunately, we were under the national neurological hospital who were fab but ultimately there is just nothing that can be done. It’s all about managing the symptoms and adapting as they change - absolutely horrendous but I’m so pleased that she’s being well looked after in a home, this is an awful illness where you must absolutely not feel bad about getting help. Enjoy the better days - I really feel that my dad really knew and understood so much more about things than he could communicate. Talk to your mum, tell her all your news and what’s happening in your life that you would usually. I found the whole process a slow mourning for the person I knew but your mum will still enjoy your presence and find such comfort that you are around and looking out for her. Sending you a massive hug.

Ps the personality aspects you mention happened to us - please don’t take anything personally, it’s the bloody awful illness. My dad did things very out of character and which were quite upsetting but it wasn’t “him” it was the illness. Bloody awful

Bookmarking here as my mum (75) also has a PSP diagnosis, along with gluten ataxia. She's now wheelchair bound with stiff limbs and a permanent urinary catheter.
She's started choking on foods and drinks but is currently refusing thickened drinks. She's in a care home with her mum (98), which is keeping them both going.
We're not at the stage of needing nursing yet, but I don't think its far off.

Definitely contact the PSP Association's helpline. They are so helpful and can also guide you on your CHC application too

@m030978 so sorry to hear of your mum, that’s one saving grace that she can be with your gran, I’m sure they can find comfort together. I found mentally adjusting to the next stage was a constant thing as the progression happens all the time but sounds like you are doing so well. Sending best wishes to you x