Living with MSA as best we can!

[Courgettegrower]

Husband diagnosed in 2014 having been apparently fully fit for 60 odd years.Things really hard now. The hot weather has rendered him very weak in all areas.

[Diane831]

That is really common in the heat. It is hard if people have always enjoyed the sun, but you have to modify what he does when it is hot, sitting in the shade, not the sun, or the coolest room in the house; Drinking plenty of fluids, but not alcohol. All really boring, I know, but we once had a difficult day when my husband was still walking and he went out onto our balcony in the sun and then half an hour later couldn’t walk To come in! We slowly learned our lesson!

Diane

[TK-67]

my mum literally shuts down in the hot weather - we were told this is literally her brain only being able to deal with controlling her temperature and little else So we now just encourage her nursing home to let her sleep, wearing really light clothes and keeping hydrated when she wakes. Seems to work.

[Hidden]

Thanks for posting. We are all with you in solidarity! Keep posting if there's anything more you want to say. Kx

[Yanno]

Hello there and welcome to this friendly forum. As I always say, it's great to have you here but a shame you need to be here!

Your post struck a cord with me as my wife, Jackie, was very fit for 60 odd years; climbed hills, ran, cycled, skied, parachute jumped (only twice!) and then the dreaded MSA struck, diagnosed in 2015, and all that is behind us. Despite the issues we have a very happy life but the thought that we no longer can so all the physical things we used to do together is what still hurts Jax the most.

As you will see from the other replies, heat really does seem to knock MSA sufferers back. Jax loves the sun and so we have a bit of bargaining to do when the sun comes out! I will help you get into the sun if you promise only for a short while and then we sit you in front of the fan!!

Welcome again, looking forward to your next post. Take care, Ian

[Courgettegrower in reply to Yanno]

Thanks Ian we are part of the Oxford set up and will be zooming on Thursday. Just hoping the weather will have cooled down by then!

[Yanno]

That's great...I hope you'll be showing us some of your prize courgettes on Thursday. See you then.