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Where Emma discusses readers replies, links and support
Welcome to this special issue where I chat about some of the messages you have sent, the really brilliant advice and links.
For a newsletter in its infancy, I am so lucky to have so many lovely subscribers! Thank you for being here. Not only that I receive delightful replies each week; some support, some advice, and some sharing your unique stories. So, a billion thank yous!
I thought this letter could be a summary of some of the brilliance you have shared.
I learnt a few things from this letter. Namely, I’m not alone! 😅 Seemly lots of us struggle with the buggers.
This nifty device was recommended. So were slipper-booties, until the ol’ shaking etc settles enough. They are a great suggestion as I live in the freezing north of Scotland.
Lots of you got back to me about the Parky Jig. I think the key to helping it a little is definitely some pre-bed exercise. Apparently lifting the wine glass isn’t quite enough 😬
*Parky Jig: no matter how exhausted you may be, the body starts twitching, leaping and shaking. Especially just before an attempt at sleep.
This one really struck a note with many of you…men and women.
Firstly, I’m delighted several of you also feel dragon transport is the ecological way forward.
Secondly, there were so many great articles about female emotions and anger as portrayed in society and throughout history, I won’t share them here BUT await a letter dedicated to this topic…coming to an inbox near you.
Fatigue. What a bitch huh?
It seems to be a very common symptom with over half of people experiencing it.
Other than trying to do ALLL the tasks before the fug decends I haven’t really discovered any thing that helps.
Hold on for dear life
Thank you for your loving words and thoughts.
As someone said…
Chronic illness is not for wimps…
I would love to imagine that professionals are aware that grief is a part of the diagnosis journey. Certainly when I was dx the only professional who offered any sympathy was a pharmacist. She just commented gently that she was so sorry I had to experience this.
That was it. But it was the kindness I needed; not heavy handed just kind.
Quite a few people shared that they were unaware of the cognitiveissue with Parkinson’s. Again I really want to cover this topic.
In fact, I am thinking of doing a mini-letter on each possible symptom one can have with this bizarre disease. Is this something you guys would be interested in? (hit reply & offer me wine)
Here is a great wee blog with some insights into symptoms and the wildness that is Mr P.
I don't know you...
I have to start by apologising for making a reader cry. It seems a common feature that people not struggling with chronic illness are quick to dismiss the symptoms etc of the condition. People suffering often do so unacknowledged and in some cases actively disbelieved!
I didn’t understand the need for advocacy until I became ill, now I believe it’s essential.
Become a Parkinson’s Ally today! Get your parky chum to shake the cocktails, add sprinkles to the ice-cream sundae and wobble along to some great music.
Until next week!
As always let me know your thoughts and stories, seriously I lovereading them.
P.S And yes, I still need friends…pop a share to your social feeds, email far and wide, tell passing carrier pidgeons! 🙏🏻