Worrying times!: Jackie and I are in a... - Multiple System A...

Multiple System Atrophy Trust

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Worrying times!

Yanno profile image
16 Replies

Jackie and I are in a bit of a quandary as to what to do! In these worrying times we clearly want to avoid picking up “the virus” and yet the thought of ‘confining ourselves to base’ without any official advice to do so; maybe is going to far.

At the moment we are just being sensible and avoiding very crowded places. One thing is certain, worrying never helps!

What are others doing?

The MSA Trust has some advice on their website which I understand will be updated as things move on A link to that is here:

msatrust.org.uk/wp-content/...

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Yanno profile image
Yanno
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16 Replies
Keycode profile image
Keycode

Can understand why you are worried, I would have been worried about my mum being in contact with it especially with the risk of it affecting the respiratory system. MSA affected her breathing enough without this. Think you have to look at the number that are infected in your area. Also if you chose to self isolate now then how long do you do that for because realistically this could be around for weeks. I think take all the hygiene advice especially washing hands regularly and try not to worry about it too much. Take care x

Hellebelle profile image
Hellebelle

Hi Ian and Jackie, I can really understand your dilemma as many people with MSA will find the virus very difficult to shake off.

I would have been very protective towards my dad under the current circumstances. However, I agree with Keycode that there is no telling how long you would have to stay away from crowds and it will be very limiting for you both. As long as you are careful with your hygiene, I would advise you to carry on as much as normal at the moment until we might all have to isolate to some extent.

Looking back over my time with dad it was all those precious trips out and those experiences that I treasure the most.

Sending love to you both

Helen x

Yanno profile image
Yanno in reply toHellebelle

Thanks Helen, I really agree. We have always been positive since the start and we’re not going to let this new monster get us down.

You are so right about the special moments. Our favourite cafe in Devon has an old quote on the wall “It’s not the number of breaths but the moments that take your breath away that you remember”

Thanks and take care, Ian xx

Hellebelle profile image
Hellebelle in reply toYanno

So true! Helen xx

Spanishholidays profile image
Spanishholidays in reply toYanno

Love your quote ,I should be so lucky

Rafaina profile image
Rafaina

Hi Yanno, I am also worried - we are currently is Spain but return tomorrow and will see what the next few days bring. We don’t normally get out much but I still work and we have my student daughter at home so am concerned about passing things on.

I will look at the MSA trust site and take their advice.

I can’t see how going out - in car for a drive or a walk around a park wouldn’t be ok and the benefit of getting out in the fresh air and a change of scenery would be a boost.

Yanno profile image
Yanno in reply toRafaina

I 100% agree! Just get out and enjoy Spring!

jabberwocky45 profile image
jabberwocky45

Bill goes to a day centre twice a week - its associated with a large concern with dementia units and nursing care.

They have issued us with guidelines similar to PHE.

Until there are any confirmed Covid 19 cases we continue meeting.

Advice making sure about hand washing and areas in the home which need extra care re hygiene.

I dont normally worry about these scares having survived 1958 flu, Asian flu and Coxsackie B3 BUT with being carer for Bill I have an underlying lung condition. Doesn't bother normally day to day but give me a chest infection and I know about it. So slightly scared on 2 counts. So everything crossed. I am getting online shopping avoidng supermarkets etc.

Hope everyone stays safe x

phamwales profile image
phamwales

im in South africa and due back through dubai next week. Ive changed my flight to a direct flight. The speed of change is a factor in my decision and as yanno says.. not to worry but to take sensible precautions and follow the advice on hand washing and avoiding habits that don't help like touching your face

Diane831 profile image
Diane831 in reply tophamwales

Peter, look at you just casually dropping in that you’re in South Africa 😅. I hope that your travel arrangements work out and you keep safe. Enjoy your trip. Diane

Yanno profile image
Yanno in reply toDiane831

Jackie and I visited SA last year - we loved it!

chester2107 profile image
chester2107

yes worried about my parents , i think my dad is probably ok as he is in hospital ,but trying to keep an eye on my mum , reminding her to use the gel when she visits (i hope my brothers are)

stay safe and well everyone xx

LAJ12345 profile image
LAJ12345

We are in NZ and only 5 cases here but I have taken the opportunity of the calm before the storm of buying enough long life food and cleaning supplies as we might need if locked in for 4-6 weeks. They won’t go to waste and I sure don’t want to be part of the problem if there is a pre lock down panic! Here we rely on a lot of Chinese imports and while they say no need to stock pile I would rather not be out shopping once it is through the community.

Buying a couple of packs of pasta and rice won’t really do . Work out how much you go through in 4 weeks and get it delivered if you need to, as it will be several car loads! then just go back to normal shopping, rotating new purchases into the store cupboard and using old first.

Even if you think what you eat isn’t made in China, some of the ingredients might be, and the packaging could well be.

Ian

As you know this is a massive concern for me with another recent visit to hospital for Sue but this time with a heart issue (SVT) where her resting heart rate was 170bpm....

All i can do is minimise the risk so what does that mean?

For me I am limiting my meetings to one on one, no group or conference stuff. No social group stuff ( i have cancelled a cycling trip to Mallorca) and limiting any visits to Sue and I at home. If youve got any sniffles dont bother.

Carers all barrier care anyway and wear new gloves each visit as normal.

On the up side.... They say alcohol based sanitizers kill the virus, so I am going to the pub to top up on alchohol as it should have the same effect????

Paul

Yanno profile image
Yanno

Good move - best to sanitise from the inside out!

FredaE profile image
FredaE

Hate to be a kill joy but the alchohol needs to be 60% proof to be any good for covid 19. Just keep on with the internal apliation as before. We do not have MSA but suffer from severe old age and we have decided to avoid crowded places and anyone with any sign of illness and do the hand wash bit, turn taps off with our elbows. The only thing I have added is a quick wipe of the supermarket trolley handle which can often be sticky with some little soul's sweeties Apart from that we don't improve by catchng someone else's common cold either. so just wrap up warm and keep going

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