Sadly the hot temperature means I can wear a vest top. This means I see the sorry state of my arms and worse my right arm is in constant motion. I didn't think I would miss the winter! π€πππxx
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I wonder who ever thought a string vest was a good ideaπ Talking heat though, my feet are always freezing cold, so hot weather is the one time they thaw out...but, my already bad walking/balance is far worse in very warm weather. Odd. Makes no sense!π I'm the opposite, I have to watch my weight as less mobile. Strange condition this.
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We had a nice sunny drive out to Marsden Moor, stopped in the car park for about 90 minutes looking at the views down to the reservoir and other side of the valley. We had a double 99 ice cream. I enjoyed it despite aware that my stomach doesnβt accept dairy. So consequences later (but took something to counteract that) LynneLast edited by Lynne K; 5 June 2021, 19:58.ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.
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Do any of you experience being very hot? Hubby is always hot eventhough his skin feels cool to touch. Consultant said the constant fascilations (forgive spelling) create internal heat.
I on the other hand am usually cold, so the intensity of our incompatibility with temperature has increased. I now just put an extra layer on or snuggle under a blanket. Don't want to moan at him now.π
Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze
Sense of humour intact throughout.
Sadly passed away peacefully 2/9/22
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MMG I think some of us are always hot, others are usually cold - few people with ALS seem to have good heat regulation π€
I am usually ice cold, but when I sit out in the sun, I just melt! No happy medium. (I rarely get fasciculations these days) xxβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
β
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