The uncertainty

[TK-67]

Things actually reached a stable point with mum doing well with the physio team who arrived to help, we even finally got an appointment for the new consultant to visit mum at her nursing home to review her drugs and importantly the home were really supporting all of us. Then after a really good day things deteriorated so quickly and within 24 hours mum had lost her mobility, she can just about stand and transfer from bed to chair etc but walking is now extremely difficult. Going to the loo isn't now an option and the commode has arrived. She's exhausted and sleeping a lot, her speech and co-ordination are becoming more difficult. She's been on antibiotics due to what looked like an infection somewhere after running a very high temp and BP at the weekend and has little appetite.

We're all so sad, mum's frustrated and so sad. It truly is a cruel disease as it just takes...we're all just now focused on keeping her comfortable and calm. We've been very lucky in being allocated a lady from the hospice who cared for a relative with MSA - it has been so good to talk to someone who REALLY understands, she dropped everything to see mum this week to provide support in what has been a tough week and the physio team have been amazing in helping us to avoid mum falling and helping her understand what she can now manage and what she can't - our biggest objective is to keep her out of hospital.

The rollercoaster of uncertainty continues - as you all do, we're just taking each day as it comes. And feeling very grateful (and relieved) at having good support at this time.

[Derkie54]

Hello Trudy, sorry to hear about your mom's mobility. My wife was the same one moment she was walking and almost overnight she changed and can now only shuffle a few steps at most. She can no longer use the toilet or shower. Strange disease, how suddenly things change. I hope your mom stabilizes now and as you say the aim is to keep her out of hospital.

Regards

Derek

[TK-67 in reply to Derkie54]

thanks Derek - mum's rate of deterioration has been so rapid, everyone's disease is so different, you just don't know what's coming and one symptom gets worse or appears and another stabilises when it was an awful worry days before...

[Kiwimagic]

Trudy

Sorry to hear this.

Your poor mum 😔

I hope you can keep her out of hospital. Sounds as though you have great support.

The disease is truly awful .... wicked wicked disease!

I hate it with a passion

I have never seen such an awful disease.

Keeping your family in my thoughts and prayers x x

[TK-67 in reply to Kiwimagic]

thank you for replying - it's a comfort knowing there are people who understand

[Yanno]

Hello Trudy, so sorry for you and your mum. It does sound like an infection of some sort. Jackie has been plagued in the past by UTI's and as soon as she gets one the mobility goes down hill.

Of course, even if you mum can only walk with a shuffle, that is not necessarily a disaster. Jax went 'off her feet' very early on and has been unable to walk unaided for some time. Jackie needs me to do everything from stand to go to the loo, even sit up in bed. The upside of that is (except once which was my fault!) we have avoided the falls that so often those with MSA suffer from. So often in this forum we hear of falls that lead to a rapid decline. Despite Jax's very poor mobility we have a good life and enjoy doing much. I just hope your mum can find some upside as well.

Take care, Ian

[TK-67 in reply to Yanno]

thanks for your reply Ian, mum's lost so much that she regards as being her quality of life, she can no longer write, read or focus properly and even eating & communication is now a struggle. Her BP and temp control is so unpredictable it's not been possible to do very much recently. as she can get unwell quickly...we focus on the small amounts of 'good' we now get...there isn't a lot of upside I'm afraid.

[Hidden]

Hi Trudy

As I read your post I felt like someone was writing about my Mum. It felt very strange. My Mum is 72, moved to a nursing home in October and was using a rollator and getting about. Then after Christmas her neck and shoulder pain suddenly got really bad and she went from being up and dressed and in her chair, and able to transfer to a wheelchair to go out for a bit in the chair (even took her to a garden centre before Christmas - although getting her in and out of the car was a massive struggle), to being bed bound in agony overnight. We saw the neurologist for her routine appointment and was admitted for MRI as he wasn’t sure why her neck was so painful. Now she is on 2 new drugs. The gabapentin makes her sleepy and slurs her speech more than ever. She is unable to get up, change position or anything really.

The change was so fast and unexpected. We were having some fun still, and now things seem very bleak. I guess we have to accept that this is the new normal until the next change. It is devastating.

[TK-67 in reply to Hidden]

So sorry to hear your story, you're not alone...it's so hard. We too refer to our 'new normal', things just seem to be moving so fast now and it does feel bleak... We're seeing the consultant this week - emphasis is just on keeping mum comfortable now.

[Tusker1953]

A similar story in our house. UTI 's blocked catheters and chest infections have plagued Alan since the beginning of December and his mobility is now nil. Speech has gone steeply downhill, he no longer reads a book but I have downloaded audible books which , when he manages to keep awake, he seems to enjoy, and he eats very little and with difficulty. Just taking one day at a time and doing my best to keep him comfortable.

Love to all fellow carers and sufferers out there.

Jan

[TK-67 in reply to Tusker1953]

Thank you for your reply - all we can do is take each day as it comes.