I need your advice my friends. We live in the north of England and rarely get a heatwave but this summer we had 2 and my HWP, who is in his 29th year of diagnosis, really suffered. I looked on HU and saw this can be a problen in PD. I told him what I had read and dealt with it with fans and cold packs.
We have been going to Portugal in June and this time of year for a lot of years. In June while we were here we both caught Covid. We were both ok, my husband better than me but his PD seems to have got worse since. We are in Portugal now and it has been a bit of a nightmare to be honest. Up 4/5 times a night. Freezing in the doorways (there are 3 close to each other from lounge to bedroom and wc) loosing use of his legs etc. It is not particularly hot in the villa. Yesterday was a pleasant temperature so I coaxed him into sitting out a bit but within half an hour he had gone 'off' hour and half into his meds. Last night we were booked in for dinner at a beautiful restaurant in the garden but when we got there it had rained so we were seated inside. We had timed his meds so he should be ok. The starter came, prawns, ate them fine. By the time the main came I could see his tremor starting. He has full arm tremor and is really bad when it comes especially in his left side. He had only eaten some veggies when we had to call the waiter for the bill and a doggy bag. I managed to get him out to the car with difficulty and he said it was the heat that had got to him. It was warm in there. He was only hour and half into his meds. When we got home he came back on again which is rare after he eats his evening meal so I have to think it is the heat.
This has more or less started happening this past 6 months. I have noticed he gets anxious more now but does not have meds for it. We are doing a test at the moment. It is 10 am and he is sitting in the sun and has gone 'off' within 10 mins. Is it his brain? He can't be overheated yet. He has also had DBS so don't know if that is affected by heat.
I know you will come back with good advice. You always do. His meds by the way are Sinemet plus and Selegiline with Mucuna.
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JeanieBeanie
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sorry can’t offer any assistance on your specifics, but just comment about Levodopa storage in hot weather. The advice on the bottle is not to store over about 26*c, not always easy without air con in warm climates. Not sure how important this is and I’m sure short term isn’t a problem but keeping in the car for instance probably not a good idea.
I have a hard time with the heat also although I haven't noticed it affecting my meds. They are giving me very little on time with or without heat
I have different things that I find helpful such as a small fan that I can take with me and it's rechargeables, a scarf sort of thing that I can get wet and wrap around my neck and it will stay cool for quite a while, another neck wrap that I keep in the refrigerator until I need it as it is full of gel that will stay cold for quite a while and a crazy looking thing that you wrap around your neck and it has two fans in front to blow on your face but I don't use that much as I would look like a crazy person.
There are many more things such as vests where you can put cold packs in pockets. I am very grateful that the weather is getting cooler. Good luck!
I feel the heat much more than I used to - used to love the 40c we would get for a few weeks every summer.
If you totally soak a cloth hat it can really help cool you down. You have to keep re wetting. Also wetting the hair is effective (if he still has any…).
And drinking iced water is helpful too.
I’m impressed he’s still travelling after 29 years with PD . I think he’s doing really well!!
' We have been going to Portugal in June and this time of year for a lot of years. In June while we were here we both caught Covid. We were both ok, my husband better than me but his PD seems to have got worse since. '
From that it sounds like he has worsened since having Covid-19 and heat that he could normally tolerate has become intolerable. You also mentioned poor sleep with frequent waking during the night. Look at some of the symptoms of Long Covid in this link and see how many might apply to your husband. If it is several or more, you might want to read the whole link :
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