jmgoyder

wings and things

The ‘climate change’ of Parkinson’s disease

on October 3, 2015

I sometimes joke with various staff that Anthony’s ‘thermostat’ is faulty. I’m not sure why I do this jokey thing because it’s not funny and it’s one of the things that I worry about most.

Mostly, Anthony is freezing cold during the day – regardless of what the temperature is outside – and boiling hot during the night (again, regardless of the temperature).

So, as we enter Spring, it might be humid outside, and cool inside the nursing home. But, regardless of whatever temperature it is in reality, Anthony’s body temperature is almost always uncooperative/opposite/unpredictable.

When Ants was still at home, we lit the fireplace fire, the Aga, turned multiple heaters on, and even got air conditioning in the living room. But I could never get him warm enough!

During the days, all of this heating would be on and I would cover Ants’ knees with a blanket, light the fire etc., but he would still be cold.

Conversely, during the nights, Ants would be so hot and sweaty that I would have to take his blankets off and put the fan on.

A couple of the staff have told me about how hot and clammy he is when they put him to bed, so I bought a bunch of singlets in the hope they they will ‘magic away’ these temperature fluctuations.

It really bothers me though. Apart from me worrying about whether Anthony is too hot or too cold, I also worry that he has now reached the stage of not being able to tell anybody that he is too hot or too cold.

Anthony never complains about his illness, about being in a nursing home, about staff, about anything; he is the most resilient person I know.

I wish I could show the world what Anthony used to be like – LOUD, gregarious, kind, generous … and a zillion other adjectives!

PD doesn’t have to be sad. Okay I am struggling with Anthony’s PD and trying to figure a lot of things out, like this thermostat conundrum, but I refuse to be sad ….

…. because I have met some friends now who help me to cope and their kindness is extraordinary – the staff at the nursing home!


15 responses to “The ‘climate change’ of Parkinson’s disease

  1. By your descriptive words and the occasional picture, we do have an idea of the man ‘before the Parkinson’ ! Diane

  2. Julie, I think you have done a great job over the years of painting a beautiful and diverse picture of Anthony. With recordings of his voice and his humor as a backdrop. Your words about him are that vivid.

  3. jensine says:

    I think you (and Anthony) are incredibly brave and I am sure that how he is now and how he was then are still the same within him – even f he can’t show it or understand it anymore. And about the temperature – I’m sorry no solutions but i do hope you find one soon.

  4. viveka says:

    Hot and cold .. isn’t that how we want our men *smile Julie, I know that Anthony keeps your heart warm … but his world is not the same anymore and I don’t think you have to figure it out. We don’t have to understand everything … I just have to learn to live it .. and that isn’t the easiest thing. You know all this already. Lots of me to you.

  5. susanpoozan says:

    Sorry about the hot/cold problem, hurray for the friends.

  6. shoreacres says:

    I’d not heard of this hot-and-cold business, but once I gave old Uncle Google a chance at it, I see it’s very common — in fact, one of the most common of the non-motor symptoms of Parkinson’s. There can be other causes (endocrine dysfunction, for example) but I suspect in your case there’s little doubt that it’s associated with the Parkinsons.

    One thing these sorts of tales always remind me of is how delicately balanced we truly are. The body’s an amazing thing, and can go out of whack in a zillion different ways. I suppose that’s something to admire — at least when we’re not coping with one of the dysfunctions!

  7. tootlepedal says:

    You have a never ending stream of problems to consider and I admire the resolute way in which you face them. More power to your elbow.

  8. I don’t remember Dad having that problem.

  9. You have much courage and you are an inspiration to me.

  10. This is not something I have heard of with Parkinson’s and I have read a lot about it recently but in all I have read I have not read anything about this it must be frustrating

  11. I’m so glad you have the staff as an additional support system. Hugs Jules xxoo

  12. Judith Post says:

    Through your eyes, I still picture Anthony as larger than life. You’re amazing!

  13. i am so grateful for whoever is helping you and keeping sadness at bay. you and anthony have so much to be celebrate and though it is a struggle at times i know that you will always appreciate the love the two of you have. sending love and hugs

  14. Is this temperature issue common to PD patients? It sounds quite awful. I know about being hot at night and how uncomfortable I get. I can’t imagine feeling hot and being unable to cool myself or ask for help. I do hope you find a solution.

  15. Sending so much love to you, Julie, and to Ants. It warmed my heart to hear of your connection to the nursing home staff. Good people to watch over our loved ones – what a precious and wonderful thing, and even better when they extend that love and care to you too. xoxo

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