Heat

[Courgettegrower]

Just wondering how fellow MSA folks have been affected by this heat wave. For us Ian’s temperature went to 38 last afternoon whilst he was asking ‘is it hot, I’m not!’ I contacted our local hospice service to check my solution paracetamol and lots of water was correct which was confirmed and worked. He needed more paracetamol this morning but temperature has remained fine all day and so has he. Yesterday there were some rather odd comments today he was back.

[TK-67]

my mum has struggled with her temp for a couple of years - she now doesn't even sweat properly. We find that when it's hot her brain is working over drive just to control her temp so we try not to overwhelm her brain, we keep her cool, and quiet. We encourage her to drink when she feels up to it, and keep her in as few clothes as possible and under just a sheet. Cold flannels help - we do keep an eye on her BP too. So far ok!

[StephWx]

Hiya, my Nan wasn’t too well on Monday when her carer arrived in the morning. Her temp was 38.6. She’s usually very cold and she said she didn’t want a fan or anything on in her room, but she obviously over heated in the night with her duvet, she has very limited movement now and wouldn’t of been able to take her duvet off if she got too hot. She’s feeling better now as we’ve got the fans out and trying to encourage more fluids. We have noticed though over the years, she really struggles with the heat, if she stays out for too long she becomes really unwell.

[chester2107]

hi my dad used to love the sun , but was told msa sufferers should keep out of it , he never complained about the heat but getting him to drink enough water was a constant battle , not that your husband was outside , i think he didn’t seem to realise when it was hot if you know what I mean

love elaine

[Helenhooter]

HiI used to love the heat but I've become less of a fan this year! I have a spray of plain water which helps me cool down almost immediately. Obviously you'd have to do the spraying but it may help?

Best wishes, Helen xxx😘😘😘

[SamanthaMSAT Moderator Staff]

Dear MSA Community,

As we have heard, the extreme heat is affecting people living with MSA.

Due to the autonomic dysfunction, people aren't able to control their body temperature and heat can make them feel very unwell.

If you can, stay in the shade, indoors with curtains drawn and a fan on.

Paracetamol can help, 2 x 500mg tablets (or soluble) 6 hourly (maximum is 4 x in 24hrs).

A cold shower will actually make you feel hotter, so go for cool/lukewarm or regular cool flannels, in particular to axilla area (under arms) face and neck.

Wear cotton or linen loose clothing where possible. Water misters for the face and neck can be nice and cooling.

Extra fluid of course as your blood pressure will drop as the body fights to deal with the extra heat, so you are more likely to feel tired, lightheaded or to faint/blackout. If you have swollen ankles, try to elevate them while you are sitting; the swelling should go down whilst you are in bed overnight, if it doesn't do talk to your GP, as it may indicate that the heart is working overtime.

Temperature isn't always accurate in MSA, but 38 degrees and higher can indicate heatstroke, so seek medical advice if the person becomes confused or unresponsive or isn't able to get enough oral fluids on board. If you have a PEG you can top up with extra water. Extra fruit, jellies and ice lollies will help to get fluid in.

You should allow extra rest periods while the weather is so hot as you will fatigue faster.

If you have any concerns, do contact the MSAT nurses.

Kind regards,

Samantha, MSAT nurse.

[TK-67 in reply to SamanthaMSAT]

thank you - I had to remind mum's nursing home very firmly about all that after finding her really struggling on Thursday evening!