Thank you for your kind advice

[Naoaguentomais]

Hi, I am new here. My husband was diagnosed with Parkinson's in 2019 but the doctors now think that he has MSA - Multi system atrophy. His decline has been rapid and I am feeling totally lost. No help from family so it is all on my shoulders. I am thinking to leave my full time job as a lecturer to look after him. I love my job and I am now concerned about my pension in case I resign from my job soon. However, I don't see any other option. He has been in and out of hospital due to other issues like seizure, breathing difficulties and falls. Is that normal? Thanks for any advice.

[Paul_and_Sue_Wood]

Hello and welcome to help!This forum is for people like yourself to understand you are not alone and there are people in the same position as yourself.

Firstly the MSA trust who moderate this site are the biggest source of help along with personal experiences we all have. Get in touch with MSA trust they have a wealth of resources.

I would suggest not giving up work as you will need to be yourself. Start looking for outside help from social services with carers taking up some of the burden. Family not helping is normal as they do not want to know a loved one has a life shortening condition and they easiest way to face it is ignore it.

There is help out there and you need to plan all eventualities.

Good luck and we are here to help.

My wife and I are 12 years in so far and counting.

Paul & Sue

[Naoaguentomais in reply to Paul_and_Sue_Wood]

Many Thanks. Much appreciated.

[TK-67]

I hope I can help a little, it's very important to get a team around you who can help you co-ordinate and give you both support. Do you have a neuro specialist nurse? If not the consultant should be able to put you in touch with one? Paul's right that the MSA Trust are great in providing lots of help and support. The challenge is that it's rare and every person presents differently so it's crucial for you to become an expert...! And come back to us, we can usually point you in the right direction - you're not alone.

[Naoaguentomais in reply to TK-67]

Many Thanks, much appreciated

[binnyrox]

Hello Naoaguentomais

I have been diagnosed with MSA and during the early days - I found this paper helped me understand the issues and remedies I could explore

mayoclinicproceedings.org/a...

Hope it helps in some way

kindest regards

[Naoaguentomais in reply to binnyrox]

Many Thanks, the paper helps to elucidate lots of points.

[Derkie54]

Hello,

So sorry to hear your news, it's a bit of a shock when they tell you isn't it !!

My first thoughts were I don't know anything about it, well there's plenty of information available from the MSA trust but bear in mind sufferers can have different symptoms.

Like you I was working to start with but eventually I retired early a lot depends on your circumstances.

I am now my wifes sole carer and we've found that you can get all kinds of equipment from your council's occupational health department but help from carers is means tested, so if you have savings you may have to pay for it yourself.

Not trying to be negative but just saying how we got on.

We do have a dedicated nurse as well as the consultant, they can provide advice and co-ordinate things for you.

My wife was just slow to start with and experiencing balance and continence issues but now she has lost all her mobility and needs help to wash, eat and move around etc.

I don't think I have helped you that much but I do think the key is to try and adjust as things change and you are presented with your "new normal".

Our normal has changed a lot since the PD was diagnosed and then changed to MSA and I'm sure you'll get plenty of support (like we did) from the forum members along the way.

We wondered how we would cope with it all and someone said to us.

" How do you eat an elephant..........one bite at a time, well take one step at a time with MSA and you'll cope "

Keep smiling when you can

Regards

Derek

[Naoaguentomais in reply to Derkie54]

Many Thanks. Much appreciated

[Orla789]

Hi I have msa and need help with most things. My lovely partner was trying to care for me while having a full time job (albeit working at home, COVID has had a silver lining for us). She was having to interrupt video calls and the suchlike to answer the door, attend to OT and physio appointments, do all the cooking and housework and also care for our dogs and horses! We have employed a dog Walker, rehomed 2 horses and put the remaining 2 retired horses on an easy care schemes. My partner was still very stressed and felt she wasn’t doing anything well. Fortunately she has been allowed a career break from work and is now much happier, as am I as she takes me out on small expeditions regularly whereas before I was stuck in a chair all day. Now we can concentrate on making the most of every day. Of course we are lucky to be surrounded by great friends and have supportive family though they live too far away to help with caring regularly. My partner also keeps in touch with her work colleagues and they visit us too. I can see that giving up work might be very isolating for you and you might not be in the right financial situation. I am busy spending all my pension and the proceeds of selling my cars, horse trailer etc. I think you need to weight it all up before you decide. Can you get enough help from carers for example in the current situation with such a shortage?

Good luck, hope you find the right answer for both you and your husband. Try to stay positive. There are lots of people on this forum and at the wonderful msa trust to offer support and advice. I have found both to be a big help.

[Naoaguentomais in reply to Orla789]

Many Thanks. Great advice.