Mum just been diagnosed with psp

[ukcountryside]

My mum has been treated for Parkinson's for the past 5 years, but now is in hospital virtually paralysed and we have been told she doesn't have Parkinson's she has PSP. I'm looking for any help and advice . Mum can't swallow, is struggling to even open eyes. She will be on palliative care when she comes out of hospital and we are heartbroken x

[AnneandChris]

My dearsI'm so sorry to read your post and that you've received this diagnosis for your Mum. I'm sure that when she comes out of hospital everything will be put in place to make her comfortable with support from her GP and Distict Nurses, assuming you are in the UK.

It is difficult to say how long she will have. All you can do is be there for her on this difficult journey and make sure you look after yourself too.

Sending Hugs

Anne

[fishponds]

Sorry to hear this big hugs x

[AJK2001]

I am so sorry to hear this, it must be a shock for you. If it is any comfort to you I have found pallitive care services to be excellent. Ask the hospital to talk to someone about what support they are able to give, might be a social worker or a Community Matron. Hospices run Hospice at Home programmes, McMillan Nurses support more than just cancer patients. Take all the help you can get. You should be fast tracked on CHC Funding and so get carers paid for - ask if it's not offered. As Anne says no-one can say how long this stage will last so make sure you take the time to be there with your Mum, but also make sure you get some rest yourselves. Thinking of you xxx

[ukcountryside in reply to AJK2001]

Hi, I had no idea Mcmillan Nurses were there for other things than Cancer, so I will look into that. The hospital have tried to put a feeding line in 3 times but each time Mum pulls it out. She isnt a candidate for a central line through her stomach as they said it is done under general anaesthetic. She is on a fluids drip for rehydration but when she comes home she wont be so I have to ensure she takes fluid via mouth, however she is unable to open her mouth and her swallow function has almost gone. She is stuck in hospital alone, cocooned in her own body, but mentally fully aware. Im desperately trying to get her home to be with her family. I know this is going to be a very difficult time and I am myself frightened about it all. Thankyou for message it means a lot xx

[Gemmadog]

So sorry - thinking of you xx

[10greenfingers]

Hi. Sorry to hear of the challenging situation your mum and the family are in. It would be difficult enough but for the additional complications of Covid adding another layer to manage. My family are fairly new to PSP and so I don't have the range of medical experience others here will be able to offer but having gone through a sudden change in circumstances relating to my mum's diagnosis, I'll offer what I can.Be sure to care for yourselves-your mum needs you to be her advocate in all aspects and it is really important you are able to function effectively. Stay well nourished in body and mind.

Watch out for each other daily-its a huge rollercoaster of emotions.

Keep a log of everyone you speak to regarding your mum- dates, designation, names and outcome of conversations.

Be proactive in following up any issue that isn't resolved.

Always follow up telephone calls with emails where possible so that there is an evidence trail.

Never feel a burden to people in your quest to find out information-your mum is as important as anyone else's.

Be cautious of making rushed decisions on her behalf and try to get a range of views.

Remain focussed on achieving the best outcomes for your mum and stay solution focussed when faced with barriers.

Seek advice from agencies such as Age UK

Explore ways of keeping in touch with your mum and be confident and tenacious in seeing through your ideas- ie send into hospital your mum's mobile and send texts for the nurse to read to her. Send audio files of family members messages so your mum may hear your voices and know she is still part of a loving family. Small familiar items in a memory box for your mum to perhaps hold may offer some comfort.

Reject Covid as reason things can't be achieved and think outside the box.

Sweet words are like honey and achieve much-always show your appreciation whenever possible.

Rest assured that you are doing your daily best and that your mum is thankful even though she may not be able to show it.

THINKING OF YOU x

[BostonBruins]

I'm so sorry that your mom has received this diagnosis. My aunt also was misdiagnosed for years - vertigo, Parkinsons - before finally getting the CBD diagnosis 18 months ago. Seems like a lot of time was wasted. 4 months ago hospice was called in when she could no longer stand/walk. It is heartbreaking to see the toll this disease takes on our loved ones. The best suggestion I can offer you is to take advantage of every service out there so you can make the most of the time you have left with your mom.

[daddyt]

Sorry to learn that your mum has been diagnosed with PSP. Unfortunately, a misdiagnosis be it Parkinson's or vertigo is more common than you think. You are now a member of a very understanding and supportive group. Draw from the experiences of those who have been on this journey, and that from others who continue to deal with PSP. No two people will experience PSP the same way, but there are commonalities as you will learn. Be relentless in your advocacy efforts for your mum's care. But just as importantly, get involved in working towards treatment - cure. Hope... matters

Tim x

[TMYLE]

Hello. I'm so sorry, I completely feel your pain. This group is new to me but has been so informative and there's comfort knowing other people understand

You could be describing my Dad. Two weeks ago he slipped into a non-communicative state, cannot move or talk and barely opens his eyes. Although we haven't had a firm diagnosis, PSP was mentioned a few months back when he was in a better state. My step mum and I are just assuming this state is the final stage of PSP based on what we've read - are we correct? She's worried about what care might look like out of hospital, and is scared he'll end up in a home without being able to visit him. We're hoping he can either come home with support or hospice but hospital still assessing him. I currently cannot see him as hospital limits to one visitor, and only seen him twice since February due to Covid. Heart-breaking.

[ukcountryside in reply to TMYLE]

Hi, sorry to hear you're going through this too. Whereabouts are you? I'm in the Midlands and I was allowed in ti see Mum at the weekend (obviously had to wear ppe).

We've been living the past 5 years thinking she had Parkinson's, and we couldn't understand why her medication never seemed to kick in. Mum was taken into hospital last week due to dehydration and it was only then that the rang me to say a neurologist had seen her and she had PSP. It does all make sense now.

I've been told Mum can come home for end of life care. Theyve organised a care plan and we are just waiting for confirmation of when carers can start. The district nurse will also be involved plus the community palliative care team. I've had lots of conversations over the past few days about how things will go and what they can do to help, so I don't feel quite so shocked and frightened anymore, just sad. I'm very thankful for the messages and information here xx