I hope we're all well and keeping our best foot forwards, with a smile?
Understanding that each persons MSA journey is different, and now appreciating that there seem to be no periods of general stability where a set of symptoms stay the same for a while (4-8wks), where does an almost complete loss of bladder control come in terms of sequences?
J is now just waiting for the suprapubic catheter because her ability to control urges and 'execution' is pretty much gone, but it was kind of OK'ish about 16 weeks, with ago with Jane being able to control things much better.
So, what are peoples experiences of when this specific symptom (almost full loss of control) occurs in relation to other symptoms? ..ie, does being bed bound soon follow, or loss of other key motor skills, or speech drop out.
Not sure I've worded this too well
Cheers
Rod
Written by
Boyyo
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Hi Boyyo, my dad's incontinence came pretty late on after many of the other symptoms. I know that for some people though this comes very soon in their journey.
We found that one of the most important things was to keep up dad's fluids to try to prevent infection as these are very common once the catheter has been fitted.
Yes, we've been made aware of the need to keep fluids up and to be honest J's been pretty disciplined with her liquid in take.
I was wondering if the apparent severity of complete loss of bladder control, is generally a sign that other 'systems' are going to be affected quite soon?
We found that lack of bladder control was early but there is no sequence and no progression except what happens. Bladder control comes in two forms and both have their own particular disadvantages. One is retention - the inability to start and the inability to empty. The disadvantage is a greater susceptibility to Urinary Tract infections with all that entails and total retention which needs medical intervention . the other form is urgency and lack of control which is less of a problem medically but can be a social disaster for your friends sofas until you find the best way of dealing with it...It is so frustrating not to be able to plan.
J suffers the second variant, not being able to manage the urgency or control the output, socialising has pretty much stopped so no embarrassing moments so far
We found that it started early on and with the inability to completely empty. Days out and holidays were spent waiting outside loos for my husband and then him having to go back in 5 minutes later. He then went on to self catheterisation which was such an improvement and made no end of difference to our lives. However as Freda mentioned it did make him prone to UTIs. Using self catheterisation lasted for quite some time (about a year) before he moved on to a permanent indwelling catheter. It was then later that he became totally incontinent and sadly now he can hardly eat and speak and we are hoping for a PEG to be fitted next week. Although the thought scares me re the PEG I’m hoping it will make all the difference like the catheter did 🤞.
Sue had a peg fitted a couple of years ago and it was a godsend. So much easier for food water and tablet intake, but Sue still eats and drinks what she wants and I adjust the feed intake via the tube. Very unobtrusive, just keep the site clean.
Sorry this is a late reply to you but I did write one that I think got either lost or never sent properly due to my poor tech ability. Anyway thank you for reassuring me about PEG feeding. At the moment Alan is in hospital and has been for a fortnight. He was taken in with Aspirational Pneumonia which I think (but might be wrong so please let me know) is caused by either food or saliva entering his lungs and causing an infection? Anyway he was nil by mouth, on oxygen, antibiotics and had a blood transfusion due to low haemaglobin levels. He then had a Nasal Gastro Tube put in because he is not fit enough for a PEG at the moment. This NG tube took 3 or 4 attempts to go in correctly then it got blocked then it came out! So after 2 weeks in hospital and only about 3 days when he was getting nourishment he is very weak but they have today got another NG tube in so hopefully he will get stronger soon and can have the PEG fitted. Sorry to have gone on about my woes but I think the moral of this story is ‘’better sooner than leave it till later’.
my dad was 79 when he started having symptoms, loss of balance , and about a year later ended up using a wheelchair as he found it too hard to walk , he was always very active so just gave up
think incontinence came before the speech loss , so had a catheter fitted , he would never drink enough fluid !
My Sue has bouts of both but we arr are still not at a catheter stage although it's in stock.....
We help sue with the use of inconvenience pads and pants with a variety of absorption abilities. I found a great web site that do all varieties and sizes at reasonable prices and delivery is great.
Like all say you don't know when a change in condition will occur, or which one, or how severe., so all we can do is meet the challenge, adapt and soldier on....enjoy every day as much as you can.
It varies so much from person to person. Mum's ok at the moment, but 8 months ago not!
She lost mobility at the same time as her continence then regained some - we're pretty sure this was down to a 'silent' infection that took some time to treat. One of the most trying things about this condition is the unpredictability and there is no real pathway.
Continence service here in Wiltshire have been lovely. Visited them first a couple of years ago due to constipation. Now progressed to using it for night time problems. We are lucky that we can get them free from the NHS delivered to our door every 8 weeks. Started off with just one (seems like massive) insert a night, to now 2 per night and a little one for the odd day time dribble!
Morning all, thanks for your responses, its really helpful, and I guess I'm not eally surprised by the variety🙂
I'm going to look at PEG because although Js eating is managed through cutting and mashing, her speech is getting very weak and this may be a precursor to a change on its way...?
Geoff’s first really noticeable symptom was a sudden total retention. Bladder issues were a constant part of his journey with pads , intermittent catheter and then regular catheter. I had intended him going down the supra pubic route but the urologist we were with was being overly cautious about the Potential anaesthetic issues.
He had a PEG fitted later for his swallowing issues without any problems.
As you say, there is no route map for your particular journey and getting each of these issues sorted out as they arise helps things settle a bit, and Dealing with incontinence Is a daily battle that takes energy. We didn’t have too many problems with infections with the catheter, but keeping the fluid intake up was important, for Geoff the PEG helped with that.
Although I've only joined this forum recently, I sometimes wonder how I manged without it.
It is so helpful to read that the symptoms my sister is experiencing are no different from many other peoples. Incontinence became an issue for her quite early on. She is in her mid fifties and this manifestation of MSA has been one of the most depressing for her so far and she never thought she would come to rely on Tena lady quite so much! She lives in the West Country and the incontinence nurse has been very helpful. If J is waiting for a suprapubic catheter you've clearly accessed the NHS incontinence service in your area.
Thank you to everyone who posts here. The information in invaluable.
I am pretty new to this chat but want to share our experiences as a family to hopefully support others.
My mother in law has been struggling with bladder loss and incontinence for a majority of her diagnosis of MSA. Once her balance loss started and lack of mobility took a turn for the worse incontence was next and happened pretty rapidly for her. She refuses to have a catheter as she is scared of infections and doesn't like change so we are on thick adult absorbent underwear/diapers. She has unfortunately lost all mobility and is basically bed bound with the exception of us supporting her into her couch (brought to us by the physio therapist with material that will limit sores). We also still try to shower her about once a week and bed sponge bath her everyday to ensure no infections and proper cleans are done regularly.
I would say it sounds like everyone is different through symptoms and deterioration. Her speech has also deteriorated quite significantly however she is still fully aware of everything and everyone and tries her best to communicate which we can understand and decifer from knowing her so well.
I also make her laugh purposely while she's on the loo or about to have a change as that makes her wee herself which is both hilarious to add some humour in our day to get her fluids out!
Hope that was helpful to know, I am reading out this to her now and she loves being part of this community sharing her experiences to hopefully support others. All the best x
Snap.... I get told off for making J laugh for the same reasons, she'll let have a little wee, but I can't really help it and what are pads for if not to let you wee whenever you want to
We get deliveries from the incontinence team directly to the house, and have just this minute received an incontinence sheet. We're really hoping that the catheter alleviates the physical and mental stress caused by constantly worrying and hovering close to the loo.
It's such a good thing to be able to share info....so, best wishes and love to your Mother-in law....keep the wine flowing in and pee flowing out
My husband struggled with incontinence/retention for years - using a combination of Depends underwear and insert pads. He would limit his fluid intake and was on a retention medication (that he wouldn't give up!) because he didn't want to have to go so frequently to the bathroom... only to get there and not be able to go.
The condition was really highlighted when he started to lose his mobility and required assistance to get to the bathroom. Now it was also impacting me to a large degree because I was still working (out of the home) and at night, he had to wake me up 2-3 times to go to the bathroom. (I don't do well on lack of sleep!) When the urologist suggested a catheter in Jan. 2020 - Carl refused to get it. She was worried about his kidney functioning being impacted and refused to renew the retention medication that a previous urologist put him on after his prostate surgery many years ago. She gave him another 6 months and a 2nd ultra sound for kidney/bladder function and would be timed with his retention meds running out of refills.
Enter Covid-19... no elective surgery being done... so summer came & went with no catheter.
Luckily... I was now working from home to be able to assist him - 24/7 due to Covid-19!
(double-edged sword?)
We both agreed to move forward with the catheter in August when we could get in to have the surgery... Carl wasn't happy about it... but I was thrilled! No nighttime bathroom runs!
After having the surgery... Carl couldn't believe what an improvement in the quality of life he has. He realized how much energy he expended each day having to get to the bathroom several times/day and night. He now sleeps through the night (and so do I!) He feels more rested and is able to "be more present" throughout the day.
Note: after getting the catheter... he did decline in his ability to feed himself and doesn't have use of his hands other than gross motor skills. So he now has to be fed, have his teeth brushed etc. Not sure if this is a 'normal' pattern or just his disease progression.
Long winded... hope it provides some insight and help!
Helping with feeding and toothbrushes is a lot easier than getting up three or four times a night to help with the weeing! We are great believers in catheters but watch out for them rubbing on the skin causing small ulcers
Every MSA journey is unique. I don’t think it’s possible to say what comes next, or how soon. (That’s not helpful, I know).
Don’t look for problems that might never arise: C was never bed bound (we went out for a pub lunch the day before he died) nor did he lose speech entirely.
The MSA journey for us was finding practical solutions for the physical issues that presented themselves, and then moving on with our (admittedly altered) lives. Focus on what is possible, not what has been lost. X
sorry: small emergency made me accidentally send unfinished reply. Just wanted the say that in our experience needing a catheter isn’t a signal for being bedridden.
However nearly 2 years later he is restricted to a wheelchair for getting around Really missing his scooter
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