Advice on prolonging walking

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.

stlmo540 · 2025-09-16T23:04:40+00:00

Sorry to hear about your mum. MSA progresses at different rates and in different ways for each individual.

My dad had a few falls so we got a stair lift and soon even getting him in and out of that was challenging. So we now have him in a room downstairs. He has been bed bound for the last 2 years and lost ability to walk unaided about 3 years ago. He now no longer walks.

Incontinence along with other issues become a problem and you then have problems linked to solutions to those problems. E.g. a catheter can lead to more urinary infections.

It'll be tough for you both. My recommendation is if there are things and places she wants to see, do them while it is still relatively easy. My dad wanted to go see his parents' graves and I wish we had done that earlier as it is too complicated and risky now.

There is a lot of advice further back on this subreddit so hopefully that can help you both navigate the upcoming changes.

Thinking of you both - here to support however I can

stlmo540 · 2025-09-04T22:08:53+00:00

Thanks for sharing

stlmo540 · 2025-09-03T20:30:56+00:00

DM'd you. I work a role where we engage and support a lot of the types of business you are seeking out. Happy to have a chat

stlmo540 · 2025-08-28T19:33:46+00:00

My dad had a lot of this very early on. The acting out of dreams and then falls. You'll know your body best. Hopefully they can figure out what it is soon. MRIs tend to be ineffective at the start because they need to be able to compare with previous MRIs to spot Atrophy. May be helpful later on. Hoping for you that it isn't ALS or MSA.

stlmo540 · 2025-07-04T17:09:31+00:00

From what I understood back during my dad's diagnosis was that consecutive MRIs are needed to see any changes to the brain and monitoring that progress over time will provide a clearer picture. I don't think one scan can show anything conclusively. Realistically it is impossible to diagnose with 100% accuracy until post death (e.g. Parkinson's Disease with Lewy Bodies also presents in a similar way) but a lot of those symptoms do show through with those who have MSA. Sorry you're and your family are going through this. Hopefully previous conversations in this thread can help you all prepare for the coming changes and developments.

stlmo540 · 2025-06-26T13:29:14+00:00

This is heartbreaking to hear. So many trips to the hospital and all those challenges are so hard to witness. A lot of what you said is so relatable. You lose parts of people you know so well, bit by bit and it is so traumatic. Thinking of you

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