help me and my sister x

[clairebaby123]

I'm in the UK..and I have a sister of 46 years old suffering with this devastating disease...I've read about it a million times.....so my sister Rebecca was diagnosed with parkinsons not even 2 years ago as many are....it came from nowhere...we noticed slow movements to begin with...and to be honest I cant remember much between then and where we are now....the deteiortion was so fast....which is a major symptom of MSA....and that's how the diagnosis of MSA came about....we could have never dreamt that the life we live now would become a reality....not long after the parkinsons diagnosis came the MSA diagnosis...we'd never heard of this before...and apparently none of her Drs have either....and still haven't....she suffers with severe anxiety....depression...hallucinations...bladder infections which send her symtems sky high...she's lost so much weight...she's lost her speech....she feels like we're all against her...its awful....her mind is still there....someone who knows what i'm going through...just to talk...would be amazing xxx

[Paul_and_Sue_Wood]

Claire any

Welcome to the site and we are both sorry and happy you are here...

Sorry for the fact that someone has MSA but happy that you've found where you can rant, ask questions, get advice and learn youre not alone.

The desease is rare and you will have to become an educator, which we all have to do.

First stop is MSA Trust as they have masses of information and help for you and professionals around you.

My biggest tip is plan for everything with back up plans, and limit risks as much as you can. We've all found trauma such as accidents or infections can cause further detiorations.

Ask away and we will try to help.

I've been caring for my Sue for near 12 years now.

Be safe and strong.

Paul

[Hellebelle]

So sorry to read this as it sounds like you are really (understandably) devastated and fearful. I am so pleased you found this forum as the people on here have so much experience and wisdom they can share with you. I echo what Paul has said about becoming an educator of both yourself and those around you. When dad was diagnosed noone had heard of this condition. We set about informing everyone we could. Gradually it became better and we didn't have to try to explain the symptoms each time we spoke with the GP. The MSA trust produce very helpful information sheets.

The most comprehensive and informed help we received came from our local hospice. They had a palliative care team with an OT, Physio and Speech Therapist and we had excellent support from them. They really seemed to care and took time to listen to us which was invaluable. I would advise you to see if a similar service exists where you live. If not, then is there a consultant or team you could link with ar your hospital or community health service? The MSA trust also employ specialist nurses you can contact with any worries or queries you have.

It is a distressing condition and at times we were angry and anxious. We were angry that dad had been robbed of precious time. However, we used our time to make sure he had the best possible quality of life in the time he had left.

We did find that dad was effected cognitively and his personality changed. He thought that everyone was against him as you described. This became worse when he had infections, which were unfortunately very frequent. The GP eventually gave us some antibiotics that we could administer without having to go through them. By that time we were expert in recognising the symptoms!

For every problem there is usually an answer that will make things more manageable. Please remember that you are not alone.

Sending lots if love and strength to you and your sister.

[Orla789]

Welcome to this forum which I , as an msa sufferer, have found really helpful and supportive. Everyone on here understands and is very empathetic which does help- if only to make you realise you aren’t alone and sadly others have this devastating disease.If your sister has anxiety (who wouldn’t!) and depression it makes it so much harder to cope with the physical problems . From my experience (and everyone’s different) I found antianxiety meds from the Doctor have helped. I have also done online cognitive behaviour course which I found useful teaching me the importance of positive thoughts and not dwelling on the future but also very frustrating because I was beginning to find typing hard work. Other types of counselling offered by the nhs I have found useless as they are too generic and they seem to have a set of questions that don’t fit a terminal disease. I am sure others will have different thoughts on this. I value being able to talk frankly to my partner/carer and good friends much more than someone unknown who can never fully understand .

Also consider what help you need as well and talk to your GP

Try to think of something nice to do each day if that is still possible. Maybe a massage for you both . I find that helps my rigid muscles and relaxes both me and my partner. You need looking after as well as your sister. Can your sister enjoy audible books? I use the free library service online Borrowbox and listen on ear phones with a Bluetooth connection to my phone.

The MSA Trust website is full of useful information and the nurses, social workers , staff on reception phones and the video

Support group meeting have all been friendly and proactive in reaching out to offer help as soon as I registered.

[Yanno]

Hello ClaireWelcome and so sorry you need to be here. I can only agree and underline the things that have been said so far. Please be reassured that there are dozens of people on this forum who understand how you feel and who you can reach out to. If there's questions you have or just want to rant at the unfairness of it all...go ahead.

I so know it's easier said than done, but since Jackie's diagnosis we have tried to be as positive as we can be. As Orla has said, trying to do something nice each day makes a big difference. Try to make every day count, make memories. We try to forget the things we can't do; we enjoy looking back on the things we did in the past but now concentrate on what we can do, however small that may be.

I was in a Zoom group yesterday and I was struck when someone said that one of the best things her mum did (who lived miles away) was to arrange for cleaners to come in each week to take the pressure off her. Sometimes it's the 'non-health' things that can give the greatest help.

Good luck Claire, you need to be strong for Rebecca and hopefully you will gain some strength from here.

Take care, Ian

[Helenhooter]

Hi Claire and Rebecca

Welcome to you both. All I can do is reiterate what everyone has already said. I still haven't a firm diagnosis but the neurologists have said that it's not Parkinson's, not MS, and not MND. I have atrophy of the cerebellum which causes cerebellar ataxia but they don't know why. I have joined the MSA trust organisation and have found them a tremendous support. Looking at the list of symptoms I think I have MSA. It has also been a really rapid decline for me in these last 6 months which makes me think it's probably MSA.

I used to do masses of sport and hobbies but have learnt to derive pleasure from being a watcher rather than a participant. I still try and focus on what I can do, going forwards, rather than what I can't. I have found doing things in 'bite size portions' was an excellent piece of advice someone wrote on this forum. It is amazing what you can achieve 'chipping away repeatly'. I go weekly to the osteopath and it's helps my tense muscles incredibly.

Good luck for you both

Cheers

Helen

😊

[Courgettegrower]

HiYou have come to the right place, well done. Finding a hospice if possible is a great idea. Our local one Rennie Grove hospice at home always has someone answering the phone and will get an appropriate professional to ring back with advice. Recently they managed to get us a home visit from the doctor. A call to 999 would almost certainly mean hospital which we try to avoid. Definitely join MSATrust if you’ve not done so. Very good fact sheets which I have just reread.

Take as much help as you can and don’t panic if the ironing doesn’t get done.

Love to you both, Jenny

[Crodiet]

Hi Claire and RebeccaAs others have said, sorry you’ve had to find this forum, but happy you have as it is really useful.

My sister had MSA. First diagnosed with ‘not really’ Parkinson’s then sent to Professor Quinn at Queen square (try and get referred to a specialist centre it helps) who diagnosed MSA in 2000 Sue was given a prognosis of anything between 4 and 20 years but lived till this year.

As everyone is saying take every day as it comes try to do interesting things, we used to go on study days to the Royal Academy and they were super, ( it’s also good fun pushing to the front to see the picture in a crowd with your own personal expert to talk about it with)

You can also arrange to park on the front courtyard at the British Museum and get VIP treatment. Another one we really enjoyed was Kew Gardens. I would recommend getting a motobility vehicle if you can it was a god send.

The diagnosis and prognosis are a shock to begin with but try to keep living, talk to the nurses at the trust they are brilliant at the detail and how to make everyday living better.

Good Luck

Take care of yourself

Best wishes

Pippa