Where Emma explores some of YOUR questions
Thank you for the lovely responses to last week’s offering. 🥰
I asked you, my darling readers if you wanted me to answer any questions. Now by ‘answer’ it is imperative you understand that, despite the rumours, I do not have the answers to the meaning of life. In truth, I have few answers to anything at all. But let that not deter you for I shall strive to offer some wisdom on these queries.1
There have been a few questions about temperature regulation, which was brought up again on Twitter. I am not sure as a menopausal woman I am qualified to comment!
In all seriousness, I suspect one of my very early symptoms of Parkinson’s was my temperature issues. I was always told I had poor circulation - but looking back I wonder.
Living in a cold but humid city on the North Sea means staying warm is harder than staying cool. My first port of call to manage this is clothing. Natural fabrics and layers are essential. I do spend a lot of time stripping off only to then add a blanket over my knees 5 minutes later! Fabrics that breathe and don’t mind cold or heat and feel nice against the skin really help. Merino is brilliant.
Next up I drink ginger tea again for warmth. Spicy food is great but I know it can be counter-effective for many Parky folks. Diet is worth experimenting with as various foods can add benefits to staying warm or cool. It is tied to our blood pressure as well.
There is some evidence to suggest that magnesium and other supplements are helpful, again I suspect these come down to the individual as to how effective they may be.
Most of my ‘regulation’ comes from topical solutions. I think we have to do a lot of this in PD since the brain isn’t instructing the body to do it for itself.
Apparently, I am not allowed to cite wine as a top tip for managing my Parkinson’s!2 Imagine.
I will attempt to conjure up some other tips.
De-stress. Take as much stress from your life as you can, and then cut a whole pile more. I mean it. Stress is our kryptonite. Trust me on this you will feel much, much better losing it.
Support. You cannot do this on your own - I have tried and it’s awful. Support comes in all sorts of forms; medical, family, friends, colleagues, online, sports, arts, pets, nature, laughter, music and loads more.
Take one day at a time. This becomes easier as you remove excess pressures and stresses. When you have support and the well-is-full of nice moments you find that the toughest days are easier. Learn not to beat yourself up if you haven’t achieved something. Have good things to look forward to but don’t build up something so the expectation becomes huge!
I know the last one is hard. I have a very demanding life with money worries, children heading for uni, not enough ability to work properly, and worries about the future of my relationship and even where we might live. But I do ‘try’ to tackle those things in bite-sized chunks.
Finally, I was asked what my view is on a dopamine measurement tool so we can medicate as diabetics can.
I think this would revolutionise how we function. Imagine if we could track the fluctuations and dose accordingly. I am a big fan of patient self-management where possible.
I hope these have given some food for thought, as ever please do reply or leave a comment for more discussion.
Alas, I am a little short on wisdom too. One must try - I feel.
You KNOW who you are!🍷🍷🍷