Parkinson’s Awareness – Ask me a question! – 2 April 2014

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I  have a question for you … what’s your secret? How can you always be so pleasant and efficient? I admire you very much, your good mood is contagious

Thank you! I suppose I regard my own situation as “just one of those things” and, like everyone else who has issues to contend with and burdens to manage, it is up to me to do my best with that – the world has enough trouble as it is, so my whining on about things publicly isn’t going to help anyone. I am frequently down in the dumps but I am aware that depression can go hand in hand with parkinsonism and I am jolly well not going to let it happen to me if I can help it! It also helps that I can spend most of my time on my bed – choosing when to exercise/do things at moments when I feel best

I  watched my Mother struggle with Parkinson’s, and personality changes due to the disease and/or medication. Focusing on one topic for any length of time was not easy for her, at times it was painful to me watching her trying so hard to keep up with the discussion. If I’m in a position like this with someone else struggling with Parkinson’s, is it better to continue with the topic, or ask if there’s something they’d rather talk about? I want to show respect for however they want to fight their disease demon, but I also want to afford them the opportunity to be part of something as long as they want. Any thoughts??

That is a really insightful question and I suppose the answer depends a bit on how well you know the person and how much they have included you in how/where they are with things and, of course, at what stage of the disease they are.

Most of the time those of us with parkinsonism just want to be “normal” (whatever that is).. we don’t want a fuss made, we don’t want every situation to become about us, but I believe we also have a duty to accept the offers of those who genuinely wish to be helpful.

It is very hard accepting that you need help… really difficult, especially if you have always been independent in nature … but my rule is if someone has asked me if I need assistance, it is probably because it looks to them as if I need it! I then almost always accept.

Maybe another time, you can speak to the person ahead of an event and just tell them to give you a sign if they need help or its all getting too much, then leave them to their devices… it is a very difficult balancing act. It is doubly difficult when it is a loved one, I am sure, and even a parent/child “dynamic” can bust in too … That’s really food for thought! Good question.

@joannekarma
#RCtheParrot

 

 

 

 

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jsbcoo7

Mostly housebound these days I keep engaged with the wider world via social media. I knit and crochet for charity (and yarnbombs!), keep tabs on the state of our blue dot and find inspiration from exploration here on earth and in space!

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