Multiple System Atrophy Trust
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Hello everyone

Hello everyone

It’s been a little quiet of late within this community. I have to admit that Jackie and I have been busy doing all the usual things that MSA demands of us but also have spent a couple of weeks on a cruise through Europe.

Our holiday reminded us of how incredibly kind and caring some people can be. We are lucky that we have a wheelchair that can get us to most places - with some pushing power from me. There was always however someone offering to help, to open the door, to give up their seat or to carry a bag.

All this made me think that it’s not the width of the doors, or the slope of the ramp that really matters. As important as that is, what counts most is the willingness of others - friends, tour guide, shopkeeper or cafe owner to be positive and make things as easy as can be.

What have you been doing over the summer and how can we all help each other “make things easier” over the winter ahead?

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Lovely to hear from you and about your lovely holiday, Jackie looks well. The wheelchair looks fab and I wish we had seen something like that sooner. We love the chair we have, but its small front caster wheels regularly catch and threaten to tip the chair forwards. A bit too late now though as Geoff has not had the best run of health and trips out are more just appointments and car rides now although I hope we might get an occasional walk if he is stable enough. Our holiday was cut short by him getting admitted to hospital in the middle of the night part way through our week, fortunately we weren't too far from home and I continued staying in our accommodation for the first 2 nights and then commuted from home after that. Don't know what the other people staying at the complex thought about an ambulance at 3am banging doors etc.

Don't know where we would be without the PEG tube as his swallow has left completely and he also lost his speech for a week but it is back although not very clear.

Anyway we continue to get on and have support from all the right people and manage without carers still so are free agents - long may it continue!

Diane

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Hello Diane

Sorry to hear about your truncated holiday, what a shame for you.

I agree about the PEG - we think it’s such an insurance policy for times when Jax is unable to take the food she should. Currently Jax has a Fortisip through the PEG each day just to supplement her diet.

I was interested in what you say about carers, we have gone down the same route with me doing all the caring, which I love. I had some good advice however from Paul W who is in our support group. Now we have a carer in for just an hour each week which gives me the comfort of knowing that if I go under the no 47 bus, someone will know our routines etc.

Take care, Ian

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I agree about the worry of the number 47 bus!! although I'm not sure which route that would be here!!! ;) How did you go about sorting our your carer - is it a private arrangement? how did you find a suitable person. This is where we are at really as Geoff is totally dependant now sadly - how did that happen! I have a document on the computer that outlines his needs but no one would find it unless I was able to tell them where it is. Every day a new challenge to sort out!

Today is constipation after all the previous antibiotics did their worst!

Thanks for the reply . Diane

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Hello again Diane

I know exactly what you mean about your document on the computer. I have learnt to print everything off and put a copy in the file kindly given by the MSA Trust. There idea of separate sections for medication, appointments and notes works well. I also have a copy of Jackie’s advanced statement there as well.

Take care, Ian

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Well my document on the computer just came into it's own again! Printed out of course as Geoff is back inside again!! All based on his catheter blocking which caused a huge bleeding situation when it was removed by the evening service District Nurse, and all the discomfort of full bladder and trying to get the new one in meant he wasn't too well, so another nighttime blue lights ride to prison - or the local hospital. Anyway hopefully he will have got his blood pressure and UTI sorted out and we can start with the escape planning. Everyone who I give it to in A&E and on the admitting ward is very happy for the understanding of his condition and capabilities and all his medications and the contact details for all his professionals involved. - definitely worth having a working document that you can update on the day of the admission for medications etc and then print out and put with the MSA Trust going into hospital pack of leaflets.

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another tip is to email it to yourself if you have a smart phone and then you have a copy with you which then can be emailed to the ward for them to print a copy if necessary - that worked well when we were on holiday without a printer!

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We had all the info on view for Mums nursing help during her illness.

Only to be told after the investigation into the issues around time of her death that they didn’t really know what she had. Thought she had Parkinson’s !

Wouldn’t mind but often spoke of the work that I do for the MSA Trust. 😫

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They do always have to know better don't they? Victor was in hospital with a broken bone when their neurologist (a man specialising in strokes !) took it upon himself to rediagnose him, eight years down the line with prob MSA, with just dementia with Lewy bodies. I was not present and Victor was not coherent. New medication appeared and I went straight to Samantha to see if it would do any harm. Her reply was no, so that saved me having to point out that if Dementia with Lewy bodies had been present for eight years someone might have noticed...even his half-wit of a carer.. He had already had one cardiac arrest and was on DNR so I did not bother. Inspires a lot of confidence in the arrogance of some consultants but not a lot in their competence. As if we don't have enough to deal with.

Sorry - hadn't realised that could still get to me four years later. Perhaps I should have had words with him at the time

and cleared the air

FredaE

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Sounds like the consultant was more eager to treat him for a complaint he knew about rather than one he hadn’t. All comes down to ignorance of the disease once again !!

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This is one function of the support groups. To help each other to have the confidence to know when the medical advice is not right for MSA and the tact to change people's minds. "Having a go at that stroppy nurse" never helps. Being calm,confident and understanding with the MSA Trusts literature for back up usually does. If not you fall back on never taking no for an answer

FredaE

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Finding a carer is difficult. I emailed all my friends and asked them if they knew anyone who had found a good carer and MOST important, who to avoid.

There are agencies who vary in what they offer and how good they are but most can only provide care at times which fit in with their carers' family committments and that means no evenings or nights. But they do offer substitutes if a carer can't come.

I picked up a very good agency this way and a friend of a friend who was a retired nurse.

Don't leave it to the last minute as the best are often fully booked. Before I did this I had the odd horror story including a man who thought all he had to do was lie on the sofa with his ipad and wheel in a cuppa from time to time. That agency did not last long.

We also had a lovely lady from the Hospice who used to come in once a week to read and share a cuppa . No personal care but two hours for me to go Nordic walking with a group which did a lot for my fitness and sanity.

Good luck. You can't do it all on your own and my lovely but not very sociable husband soon regarded his carers as friends and looked forward to them coming

FredaE

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Freda, we couldn’t agree more about how hard it is to find good carers. Also we have found an agency that has quality staff (based on two out of two so far) but their admin is dire. They just seem unable to organise the rota and we have to double check arrangements with the carers - not ideal.

Of course the other issue that comes with finding a really good carer is that if that carer leaves its even more of a problem because they have become ‘friends’.

Take care, Ian

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Yes. another challenge for those who like that sort of thing!!

FredaE

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Diane, this is Paul a friend of Ian. My Sue has MSA and it's developed very slowly over 8 years. She describes the changes as on a plateaux for a while then something changes and then your on the next plateaux for a while.

Sue now has a PEG which helps as she struggles to swallow and her speech is failing slowly.

We have carers 3 times a day. This is paid for by the council as Sue has no earnings or investments. This was organised by the local council social services.

We are now looking at continual health care as a PEG triggers this financial support where the health authority pay for all health needs including carers.

This allows me to work during the day and we thus both remain sane.....

Hope this helps.

Paul

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