5 weeks since diagnosis - managing the rollercoaster

[TK-67]

Hi - my 72 year old mum was re-diagnosed just 5 weeks ago after 7 years with a PD diagnosis. This happened due to the rapid deterioration in her symptoms. She moved to a nursing home 4 weeks ago for some respite and it had become increasingly difficult for her to manage at home. Up until 2 months ago she had managed well on her own.

Since being in the home we have experienced a rollercoaster of symptoms and we and the home are struggling how to manage these.

The most worrying is an acceleration in her confusion. At the weekend she 'escaped' from the home and managed to walk with a walker or sticks (she can't!) up a hill and along a main road - luckily she was seen and accompanied but she was confused about where she was going or why? This was followed by hours of sobbing and a very sad lady.

She is now struggling to get dressed properly - can do it but her choice of outfit is not what she'd have done a week ago.

She had periods of complete lucidity but then will then drift into confusion.

One of the key symptoms that has arrived since arriving at the home is REM sleep disorder, the home reports that she's asleep but she reports how busy things have been overnight and she's exhausted. Her consultant has increased her sleeping medication slightly to try to help this.

We are struggling with the home as she is becoming a safety concern due to the escaping - we had another near miss this morning and want to move her to the dementia floor. I agree that this will keep her safe however we are feeling a bit alone in that no doctor was called today to check that there isn't another reason for the confusion - is it the MSA or are the home missing something.

From reading your stories MSA seems to affect everyone differently...we're just concerned about the rapid development of this and ensuring she has the correct care?

[Hellebelle]

Hi, sorry to hear about your situation. It's so hard watching loved ones go through this.

Just a thought, has your mum been tested for a Urinary Tract infection? This is very common in MSA and can cause acute confusion and emotional outbursts.

[TK-67 in reply to Hellebelle]

This is one of the things on my list - we mentioned it last week and the GP didn't seem keen to even check! As with everyone else here finding people with the right knowledge of MSA is hard! Haven't been able to get hold of any of our 'experts' today.

[Hellebelle in reply to TK-67]

Hi, its very sad when simple tests like this are missed. Not everything will be down to the MSA especially if it is a sudden change. I wish you luck in your quest to find some answers.

[TK-67 in reply to Hellebelle]

Hi Helen - it's been a struggle since mum moved to the home...we feel like we're being awful relatives constantly having to bring things up but they don't have enough experience of MSA or mum! Our challenge is finding alternative suitable homes in our local area, it's just not possible to care for her at home.

[Yanno]

Hello Trudy. It must be so hard for you at the moment getting answers when dealing with others. Sometimes it feels like driving a car from the back seat with a couple of ropes tied to the steering wheel!!

First off, Helen‘s advice is good as usual - I would push for a UTI test. This isn’t a doctor’s thing the staff at the home should be able to do a dip test - If positive...success ..send a sample to the doctors for analysis. We have our own stock of testing sticks - first thing we do is a dip test if things are amiss.

Jackie had night terrors and the usual sedatives just didn’t do the trick. The MSA Trust specialist nurse suggested clonazepam - our doctor did the script and one night later...no night terrors! This is one drug we would never want to go without.

Sadly you are right, everyone has to go down their own individual journey with MSA but we do all learn so much from each other. Good luck, take care, Ian

[TK-67 in reply to Yanno]

Thank you for responding - mum's already on clonazepam, it can be increased further though. I will push for the UTI test....

[Keycode in reply to TK-67]

Hi, my mum got diagnosed with MSA about 2 -3 years ago after initially being diagnosed with Parkinson's. Although her condition has progresssed and she is now bed bound, it has been a gradual process but like the others have said she does deteriorate if she has something else going on like a UTI or a chest infection. The only other thing that has really caused her to hallucinate and become confused is some patches that she had prescribed for excess saliva. Has there been a change in your mum's medication recently that might be affecting her? My mum is also on clonazepam for the night terrors and it has proved to be very effective. It must be such a worry for you. Hope you get some answers soon.

[TK-67 in reply to Keycode]

thank you for replying - we're pushing the home to check for a UTI. I've also spoken to the MSA Trust nurse today and it looks like it may be a combination of small changes to her drugs, moving to a home and being in a car accident last week....a lot to cope with together with what MSA is doing to her brain.

We're hoping a little more time may help. It wasn't possible for her to remain at home and the home is learning about MSA too, often struggling to cope with the ever changing symptoms which aren't like anything else they've seen.

Can I ask how much clonazepam your mum is on?

I think one of the issues for families is being able to talk to MSA experts when we need to.... the difficulties of dealing with a rare condition that seems to affect everyone differently. It's helping now having the forum - another group of MSA experts!

[Keycode in reply to TK-67]

We struggle to get the support we need for my mum. Both the gp and the community nurse have very little knowledge of MSA and I feel that they only treat what they know and sometimes it feels they ignore what they don't. I have now started liasing with the msa nurses whenever we need advice and then pass the information on to the gp. The msa nurses have at times contacted mum's gp too and advised on things but even then things don't always get sorted. My mum is on 500mg clonazepam, as far as I know that's the dose she has always been on.

[Startreckersdaughter]

I agree she may have a infection going on which will make her confused moving into the home could also be a factor my dad always says it busy of a night time we are lucky the home my dad is in is lovely and look after him very well hope your mum settles soon have they thought of maybe a bed alarm to help keep her safe

[TK-67]

thanks for your reply - I think we need to re-think the home situation, We're all finding their approach to her condition upsetting and they're not getting the care right for her at the moment especially in respect to her non 'physical' & physical symptoms - she doesn't fit into a 'box' of conditions they've seen before.

We're struggling to find places that can offer the right care within easy reach for family and friends. The difficulties of a rare condition. She isn't just suffering from the hallucinations and confusion at nighttime, its across the day but not everyday! And every time I mention the possibility of an infection I get a 'look' and they examine her and say she isn't experiencing any pain!

[Yanno in reply to TK-67]

Sorry Trudy but the comment from the staff about pain is nonsense! Jax has had repeated UTI’s and every time she is non-symptomatic other than the urine itself and a ‘step down’ in MSA ‘symptoms’. As soon as the UTI is treated she has bounced back. At no time has she experienced the classic symptoms of an infection.

Sadly I think you are right to consider the future of the home. Have you spoken to their medical director/sister rather than the staff - that may help.

Ian

[Ballymoe]

Hi Trudy,

Ian is right my dad never has pain with a UTI, even when the GP dip tested he’s urine it never showed up anything until she sent it off and that showed an infection!! I would take a sample into he GP and insist that it’s tested.

My dad has also been suffering with hallucinations and confusion throughout the day and night like your poor mum, he’s Parkinson’s consultant changed he’s Parkinson’s medication and gave dad Quetiapine at night and that does seem to have helped. Like your mum my dad had a move into assisted living and also a change in carers which I don’t think helped he’s situation, he said he feels like he’s brain is fighting him.

You are doing all the right things just keep going and hopefully your mum will settle. Sending love I know it’s very distressing seeing your mum like that

Lou

[TK-67]

thank you Ian & Lou - I have summoned the professionals! So far the independant nurse sent to do the CHC assessment was astounded at how things were being managed and today the doctor sent from our specialist team did the same! The manager didn't want to listen yesterday when I raised our concerns- madness when I know considerably more about MSA than she does and about mum!

We really want to make this home work, we have very few other options in our area and at this stage for mum another move could make things even worse.

We importantly now have a new referral to another specialist MSA doctor who works in the area of mum's home.

The decision today is increase her sleeping medication and monitor timings of her drugs and patterns of behaviour/symptoms. We can also see a pattern emerging of when mum has busy days e.g. more people visiting/noise/going out - the following day is bad so over stimulation may be a factor. We take small steps in how to manage symptoms. Feeling a little more positive.....

It has been really helpful to hear your views and the professionals agree - we know our stuff!

[Hidden]

I'm so sorry you're having to do all this. I imagine when youre less busy, the care quality commission would welcome your feedback on the home! And/or the care opinion website xK