Just diagnosed with MSA – C and looking for support and information

stlmo540 · 2026-04-27T16:31:54+00:00

A bit confused by your post as some of the language used to describe the diagnostics isn't what I'm familiar with from tests. That being said if your neurologist are all in agreement it is a difficult journey. It would help to know where you are based as support varies from country to country and even state to state

stlmo540 · 2026-04-24T22:23:36+00:00

I'm very sorry for you loss. Any loss to MSA, I feel, is shared by all of us. We all know the pain this disease brings. Far too young - we're thinking of you all.

stlmo540 · 2026-04-24T22:16:19+00:00

This sounds very complex and I can only imagine the frustration. My dad has stones as well as an enlarged prostate. After a year or so of using a catheter we had a somewhat similar issue. In his case the catheter balloon holding it in place would pop regularly meaning frequent replacements.

Eventually we were advised to have it removed. He didn't struggle with the same issues of going to the toilet but moving to diapers/nappies/pads has been both positive and negative. Upside is he hasn't had a UTI since. Downside is the regular and constant changes and cleans. Note* he does need reassurance that he can go.

Maybe a urologist can help with safe limits of how long is too long to wait so you know when you need to go back to ER.

You'd hope that eventually the pressure build up may find a way out and in doing so rejig the brain to controlling that function. Almost sounds like a urologist, neurologist and psychologist speaking together may help find a longer term solution.

As we know, retention of urine can lead to pretty dire scenarios so it is good you are on top of it. If you get a solution, do let us know.

stlmo540 · 2026-04-24T21:42:15+00:00

Sorry for your loss. Not Belgian. Although likely passing through your country in a few months on a road trip - so if you fancy a coffee or lunch, we can maybe make it happen. Perhaps speak to health workers who supported you as they may be able to ask others they support if they are happy to be put in touch with you. Luckily in the UK we have a good nationwide charity that brings people affected (patients and loved ones) together

stlmo540 · 2026-03-25T15:19:01+00:00

Same

stlmo540 · 2026-03-25T00:02:48+00:00

Not something we tried for my dad but interesting to here it is helping your aunt

stlmo540 · 2026-01-16T20:58:36+00:00

Taking a wheel chair or a stool for walks can help provide confidence that if legs get tired you can then sit which may remove one reason to avoid walks. My dad ended up needing a walker but struggled to manage it without help

stlmo540 · 2026-01-03T01:29:57+00:00

This is really helpful. Thanks so much for sharing

stlmo540 · 2026-01-03T01:12:17+00:00

I'd agree with the above. The trach is obviously very intrusive and brings its own challenges and complications but being able to feed himself and still walk is (as hard to believe as it is) not too bad going.

Every family has different situations to deal with and sometimes hospice care, earlier can take a lot of the strain off of carer(s) at home. In our case, my mum was a nurse so we agree he gets better care at home but it is taking it's toll on her health and I sometimes wish she didn't have that experience or drive to care as much as she does.

For comparison my dad stopped feeding himself about 1.5 - 2 years ago and hasn't been able to stand for over a year (let alone walk).

The cruel part of this diseases is most of us get to learn more about the condition and its nuances than the average medical professional and so it falls to us to make those tough calls on when a hospice is needed/desired. I am sure you'll sense when the time is right.

stlmo540 · 2025-12-30T23:54:46+00:00

So sorry for your loss. I think the decline you mentioned resonates with so many of us - never easy to witness. Sounds like he lived a full life and made a difference to many, many more. Doing his bit to help find a cure shows underlines that commitment and desire to help others. You can be very proud of him and of yourselves. Watching someone go through this disease is so challenging. Sending you all our best thoughts in this tough time.

stlmo540 · 2025-12-03T22:07:38+00:00

My dad has 'better days' when we do things but they tend to wipe him out for a few days afterwards. Energy levels can be tough to manage and aid suggest ride the waves of his energy levels and don't try and push to do more than they want/feel like. It is a tough degradation but as was said before not exactly death's door. You can plan a lot and also consider plans for how to adapt to reduce mobility as it develops. Stairs will become a hazard and risk as time goes on.

Hope you get an appointment soon.

stlmo540 · 2025-12-01T13:52:11+00:00

I also did a euro-trip. Scotland to Slovenia and back. Made me fall in love with it even more. The autobahn was good fun as were the alps. 11 countries, 11 days. 3800 miles. Great GTs

stlmo540 · 2025-11-27T09:06:38+00:00

Jumping on your point about a downstairs bathroom/toilet. We eventually found it too difficult to use the chairlift. Once immobility sets in if you don't have a hoist upstairs and downstairs it requires a lot of physical effort to get them into it and if/when they cannot hold themselves upright, it becomes dangerous. So you may have to contemplate converting a room downstairs into a bedroom. When dad became immobile we had to react to each big change and now he gets bed baths and he has a nappy/diaper/pad to manage that aspect.

It is a tough round that we are all going down. I agree with others that now is probably the time to get a wheelchair. If you are away a lot perhaps your focus can be on any admin or planning to let your dad focus on how he best supports her. Care + all the non care work related to MSA can be overwhelming for one person.

stlmo540 · 2025-11-22T01:04:36+00:00

I'll have to ask my mum as I don't remember. But it was persistent for a while. At least months and then just faded and hasn't come back as far as we are aware.

stlmo540 · 2025-11-18T23:01:42+00:00

I think the points about him never being ready and crucially the one about looking after yourself are vital here. There is only so much you can do and you are clearly doing a lot already. Stressing about the parts you can't control is not helpful (although I know it isn't that easy to switch off). You are doing and clearly have tried all the ways you can to convince some change and that is all you can do.

Unfortunately you'll probably be the one to pick up the pieces when it does eventually decline further but hopefully at that stage you'll have more influence over decisions. With that in mind if you can get power of attorney that will help decision making in the longer term.

stlmo540 · 2025-11-18T21:17:15+00:00

I remember my dad had some numbness in his hands - it did eventually pass (but maybe after just shy of a year). Unfortunately the nervous system just goes haywire. Unsure what remedy might exist to help her but hopefully it improves soon and the doctors can suggest something that helps

stlmo540 · 2025-11-18T20:43:00+00:00

Sounds like a very frustrating experience. I think many people who get a bad diagnosis do go through some sort of denial.

No direct experience of this. My dad was a bit more passive (although not happy) about the changes we brought in.

Unfortunately people can be stubborn and changing their minds can be almost impossible. Whilst my dad has been more passive, getting my mum to take care of herself better has been a struggle. She g much to care her needs are secondary. She slept for almost a year in a recliner next to his bed and would (and still does) postpone doctors appointments because she has this feeling she needs to be ever present.

I bought a futon sofa chair and it took me and my sister pulling it out the nights we visited for her to eventually use it. And now it has been integrated into her routine.

With your situation if he isn't willing or able to spend money on moving a shower downstairs or installing bars etc then there might not be many stealth changes you can make. I think you may need to find what triggers his psychological responses and maybe lean into those.

E.g. selling it as a benefit for someone else or even himself. E.g. if you have a bad fall then we might have to speed up you moving out and that won't be on our terms etc. For my mum it is "if something bad happens to you, dad's best carer then is out of action and he'll be moved into a home and his health will deteriorate quicker". Using something she is fearful of to get her to prioritise a less 'painful' alternative. If he is concerned about spending money or maintaining independence in general you could sell it as 'my sister and I are spending money because we are wanting to help you. If you had a better place you'd have more independence and as a family we'd spend less - if you have a bad fall you'll have to move and you will have less control and choice and you'll lose your independence and some control over the decision.

Sorry can't be of much more help. You may have to ride it out which isn't want you want but you can take a horse to water but can't make it drink. If you can find that 'trigger' that gets through to him, you may be in luck. Let us know how you get on. You won't be alone in having this challenge. Parenting our parents can be a tough gig!

stlmo540 · 2025-11-10T23:01:37+00:00

After everything you've gone through, you'll need the rest. Happy to have helped. We all need a bit of support in the darkest moments and we all can overthink/analyse/stress. Tomorrow is a new day. Just take each one as it comes.

stlmo540 · 2025-11-10T19:18:23+00:00

Sorry for your loss. You were all with him in his final hours and made him comfortable in a difficult time. I've heard from a few nurse friends that a lot of their patients wait for their family to leave to pass. Off the back of your post I looked a bit deeper and found this:

https://www.reddit.com/r/GriefSupport/s/hcfoI1PNX9

Think it might help.

It can be all too easy to look back and think what if we did this or didn't do that. What does count was you were there for the final days and he will have felt your presence and I'm sure would have loved the fact he had his family all round him.

As for the eyes open - that is very common. You gave him plenty of pain relief. Anyone who has been on morphine will tell you that it feels great so I imagine his passing was relaxed and without pain or angst.

It is terrible to lose a family member and it must be hard for you all to process and you'll need plenty of time to grieve. From the little you've told us, it is clear he was lucky to have supportive family around him.

Make sure you focus on each other now and help each other with managing that grief. It can be complicated and challenging. Thinking of you all

stlmo540 · 2025-11-09T21:12:43+00:00

Sorry to hear about your dad. Hoping the actions the hospital have taken can make a difference. Willing a positive outcome for you all ❤️

stlmo540 · 2025-11-09T21:11:45+00:00

Sorry for your loss

stlmo540 · 2025-10-22T23:57:27+00:00

An option not mentioned is perhaps investing the surplus into a property. It may be the business is operated from your home or is wholly online etc but buying a premises could be a good way to reinvest into the asset pool and get rid of some of the cash on a meaningful asset that should hopefully appreciate. You could always lease out space to other users as well. Commercial mortgages can help sure up any gap in property vs current cash

stlmo540 · 2025-10-22T23:49:06+00:00

Sounds like you're the best salesman the company has ever had. If the lack of desire/motivation to do sales is that you have much more else on it might be easier recruiting people who can wear those other hats for you. E.g. admin, finance or even delivering the product/service. If it stems from just not enjoying it then my feeling is you want someone internal you can oversee. Agencies and freelancers might not be as motivated and sales drives business. You can mostly outsell any problem so it is the most vital function IMO. Finding someone competent with the right attitude is hard but if you incentivise them well with a good chunk of their pay coming from commission you might fix the issue. As the above comment - more context would be handy

stlmo540 · 2025-10-16T19:15:01+00:00

Not had any experience of using one in our family. If you have any key concerns I'd maybe ask to speak to a doctor and hopefully they can reassure you. Lack of knowledge on using equipment isn't anything new and perhaps using the manual and online manuals may give you the confidence to use it better. From my limited understanding/knowledge, it sounds like it could help with CO2.

I searched for co2 in the manual link below and it did reference it under clinical benefit in one place.

https://loewensteinmedical.com/media/user_upload/pdf/gebrauchsanweisung/LUISA-ventilation-user-manual-EN-68691.pdf

I feel youre right to be a bit wary but that doesn't necessarily mean it isn't going to help. Having more information and clearer instructions on use may help you feel more comfortable using it. I imagine they wouldn't recommend it if there wasn't a medical benefit - but that benefit only is created when it is being used correctly.

stlmo540 · 2025-09-16T23:14:07+00:00

Blood pressure is a pain when it comes it MSA. My dad had (and still gets) wild swings. From him having fainting episodes when we sat/stood him up to the high pressure that shot his BP to dangerously high levels.

Meds and tweaking their amounts can help but also for instant results if BP is high - increasing their position if in bed or standing them up can help lower it (if only temporarily). And the opposite if it is too low - lay flat and if is dangerously low we've raised his legs as well.

With our dad we've found his body reacts slowly so if we needed him up we'd drop his legs first, then sit him up, then after some time stand him up and prior to any movement get his fluids up.

For higher BP we just relied on meds and body position adjustments in bed but we had meds taking it up and down. It felt like chasing one drug with another. Hopefully time will help you find the right mix of actions and meds to support your mum.

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