How long have we got?

[Oliverwindsor]

My wife was diagnosed with Parkinson’s two years ago, only recently have we been told she had MSA-c. Her condition seems to be going rapidly downhill, to be honest we are both scared after being married for 36 years. Can anyone help with what we are going to expect as we want to give her the best for the remaining time we have.

[Paul_and_Sue_Wood]

Oliver

We are really sorry that you are here as your wife has been diagnosed with Multiple System Atrophy as we would all not wish it on our worst enemy. However glad your here as you can learn and ask questions of people with the same condition.

The simple answer to your question is we do not know how long we have got as each individuald route is different both in time and symptoms. You will find times of increased changes and times of remaining static.

My wife and I are over 10 years since giving up work and we are still here.

All we do is ask questions, learn, accept and adapt. Ask for help .....for both of you and enjoy every moment you have.

If you have more questions then ask away

Paul & Sue

[Beauty23 in reply to Paul_and_Sue_Wood]

Hi Oliver,

So sorry to hear your wife has been diagnosed with MSA.

As Paul said you just never know how much time a person with MSA has. My mom was diagnosed 3 years ago, although she believes her symptoms started 5 years earlier. I've been looking after her fulltime for the past 18 months. During that time her condition has deteriorated significantly but it seems to have stabilised over the last 2/3 months. Now, she is on antibiotics every 2 to 3 weeks for urine infections, no longer can walk and her swallow isn't great, but these are manageable and overall she is doing good.

She was so unwell last year I honesty didn't think she would live to see Christmas 2019 and now she's getting ready for Christmas 2020. So you just never know....

Enjoy your time, and never try to predict how long you have together as its impossible.

Support is vital!!! Don't try to do it on your own!!

Take care,

Mary

[Diane831]

It is the age old question, and as Paul says - we just can't know. Progress is not linear, your wife's set of 'pick and mix' symptoms will not be exactly the same as everyone else's, and how you approach it will affect how difficult will seem. My husband had the Cerebellar type onset - he didn't get diagnosed with Parkinson's first, he was wobbly with the ataxia type symptoms first. We had been married 35 years when he started with this crazy disease at the age of 62. You have done a brave thing getting on this group and asking the question and that would seem to be a great step. All the different things that you will read on this forum won't necessarily be your experience, but knowing about the kind of things that can happen can help you to be forewarned. If you are in the UK, have you been in touch with the MSA Trust?

msatrust.org.uk

They are the best place to go for information and support. There are Specialist nurses, fact sheets and online support groups, all of which are amazingly helpful.

I am really sorry that we can't answer this particular question for you - there is no answer - but you are among friends here and we will try to be alongside you on your journey, and can offer advice about particular symptoms fro our own experiences if that helps.

Diane

[Yanno]

Hello Oliver, I one hundred percent agree with what Paul & Sue have said. I am sure you will have looked at the MSA Trust web site and do contact your MSAT specialist nurse who will be a great source of support. Make every day count, be positive, make some lovely memory together.

Take care, Ian

[Hellebelle]

Hi Oliver,

All I can do is echo what everyone else has said. The most important thing for us was to try to remain positive and make some precious memories. We had support both for dad and mum as it meant mum could have some respite and retain her social contacts. During Covid this has become more of a challenge for people, but hopefully with the arrival of the vaccine, people might be able to get back to socialising.

There will be challenges along the way when you adapt to fit with the symptoms. Dad's mobility deteriorated for example, so we had to adapt the layout of the house and had to use equipment provided to assist with mobilising. Dad had many infections along the way and each time, he seemed to deteriorate and then bounced back. We prepared ourselves each time for the worst but he was remarkably resilient.

This site and the MSA trust help so much if you are stuck and not sure which way to turn. There is always someone whom might have had a similar experience and can advise. The specialist nurses from the trust will also advise and understand the condition.

Wishing you both well and hoping you have a good Christmas.

[Olivemyrtle]

My mother was diagnosed about three years ago but looking back, she'd probably had MSA-c for at least five years, if not longer. She is now needing hospital-level care but can still eat very well, although her speech is increasingly hard to understand and she's almost totally physically incapacitated. There doesn't seem to be a typical time-frame with this loathsome disease, I'm afraid but always remember that there is a community of people who are travelling the same path, and who understand exactly what you are feeling right now. Take care!