Introduction

[Monkeydub]

Hi All,

I have only just found this forum and hopefully it will be able to answer questions and guide me through a very grim looking future.

My wife was diagnosed with Parkinson's in September 2021. After recent a MRI scan and MIBG scans we had a letter arrive last Friday that she has MSA.

I have seen a rapid decline in my wife's health, her mobility, speech, cognitive functions etc., and there has been lots of tears shed between us..

We had great plans for retirement and watching the grandkids grow up, visiting places we always dreamed of and enjoying life at our own pace. Unfortunately, that has now disappeared and I spend most of my time looking after her needs hoping that she will recover.

Anyway, just a quick introduction I'm sure I will gain some positivity for being part of this forum. Many thanks for the acceptance.

[Anovis]

It's good that you found this site but very sad to learn of your wife's diagnosis. My husband was diagnosed with MSA-P in August of 2021 and without this forum it would be a much lonelier journey. It is difficult to find someone (even doctors) who has heard of MSA. My husband can still communicate, walks with the aide of a walker, and feeds himself. He had a permanent catheter placed a little over a year ago. We try to take one day at a time and tackle issues as they come up. It's not easy, but so far manageable.

[Monkeydub in reply to Anovis]

Thank you for the message. It does seem that we are all in a bit of a situation where there is very little information to be had in the general medical world and we are lucky to have this site and forum to help us find answers and guidance. Like you say, one day at a time.

[Derkie54]

Hello,

Sorry you have to be here but it's a friendly forum with plenty of people willing to offer advice and share their experiences. So if you have any specific questions just ask.

Have a look at the MSA website : msatrust.org.uk

There's plenty of info there and the staff are extremely helpful.

My wife was diagnosed with PD first as well then MSA-P in 2016

Like you it's not the retirement we had planned and we had many questions at the start but now we just try our best to adapt to the changes as they come.

I'm sure you're doing your best to support your wife, you can't do anymore than that.

Take care.

Derek

[Monkeydub in reply to Derkie54]

Thank you for the message. I have had a brief look around the main site and there does seem to be lots of good information and lots of friendly advice. I am glad I was directed to MSA Trust, I have already picked up plenty of information I was not aware of. We are both learning to adapt to the changes and have a good, caring family to help us on this road.

[Paul_and_Sue_Wood]

Hi

We are always sad and glad to see a new person on here. Sad that your wife has now been diagnosed with Multiple System Atrophy, but glad you are now able to learn how to make the best that you can from this horrible situation.

I would reiterate contacting the MSA trust as they have nurses who know more than all f us plus admin staff to guide you through the changing circumstances and the physical, mental and financial help that may be available.

You will have a whole range of questions and also frustration, the forum is here to ask and vent... we all have.

My wife and I have been on our journey since diagnosis in 2016 and we still keep adapting and adjusting to the changes.

Best Regards

Paul & Sue.

[Monkeydub in reply to Paul_and_Sue_Wood]

Thank you, it is a horrible situation and we are trying to make the best of it as we go along.

We have just been to visit some health professionals in Derby, who were so helpful and reassuring. A speech therapist has started to assist my wife now and someone is coming out to visit early next week to assist with my wife's difficulties in manoeuvrability.

I have had to cut down my working week to three days (as of this week) which will obviously hit our income but it is worth it, so I can spend more time caring and helping my wife to make her life more tolerable and provide the quality of life she deserves.

Adapting and adjusting to the changes does seem to be the way.

[Photo1250 in reply to Monkeydub]

Also, apart from the MSA Trust, take advantage of any support services around you. After a while, we finally approached Carer's Plus, a charity here in North Yorkshire. (There may be similar in your area). As the name suggests they support the carer, me. Adrienne has MSA. They have been superb to both of us, as they have a Veteran's representative, whom we can't fault. (We both are veterans). They organise veteran's meetings and events and have given us a new social opportunity. They then put us in contact with Support for Carer's. A representative came out to see us, and finding out Adrienne loved singing arranged for Adrienne to attend the Alzheimer's Society's "Singing For The Brain" sessions. (Of course, they make me sing, too)!

There is a lot out there. Take a look and grasp the opportunities.

[Paul_and_Sue_Wood]

Hi

I would also suggest chatting with the financial support team (Sam) at MSA Trust as they may have some routes for financial support to help you both. You will also need to involve social services to access council support such as carers and a care package again Sam may be able to assist and guide you.

My tip is accept all the help you can as its about the both of you.

Paul

[esj20]

Hi there,

Sorry you’ve found your way here but glad you have. Always good support and you’re not alone with lots of similar people on the same journey.

MSA trust are invaluable and always 100% helpful.

Progression is different for everyone, 6 months ago I was walking my dog but now, my recliner to my bedroom etc. is the most I can manage, for everything else, it’s the wheelchair,

yours

Alec

[Monkeydub in reply to esj20]

Hi Alec,

Thank you for the reply.

There does seem to be a lot of support through this forum and the MSA Trust website, which is very reassuring.

Sorry to hear of your progression. It has shocked us both how quickly my wife has declined in her health. We need to push forward and make the best we can out of each passing day.

[SophieCat55]

I am really sorry to hear about your wife. This disease is just awful my partner was diagnosed with Parkinson’s 2017 and then because of his rapid decline was diagnosed in 2022.

Unfortunately he passed away 2023.

If there is anything I can help you with feel free to drop me a message.

I don’t want to give you any advice that I’m not sure of but will in anyway where I can.

When my partner went into hospital the nursing staff never heard of MSA so I had to advise them and tell them to get in touch with the MSA trust for more information so that they could give my Frank the right care.

Take care and wishing you all the best looking after your dear wife.

[Monkeydub in reply to SophieCat55]

Hi Sophie,

Thank you for your reply.

I totally agree, the disease is awful. So sad to hear of your husband. I hope you are coping with his loss and staying strong!

Thank you for the offer of help and advice. I 'm sure I'll be asking lots of questions sooner or later!

I am doing my best to look after my wife, it is hard work but willing to carry her on my shoulders if I need to. It is her quality of life that is most important and making sure she is not alone in this situation.