I had the privilege of being the Pinjarra Rotary Club’s guest speaker a few nights ago and was very touched by their genuine interest in my journey and Parkinson’s in general. I am passionate about educating the wider community about living with PD and breaking down common myths that surround this wretched thing .My aim is to promote understanding and empathy not strange looks and sympathy and this talk to these fabulous people has gone a long way to realising this aim..in Pinjarra anyway.
There were some very insightful questions afterwards but the one question that surprised and delighted me was “How can we, as a club, help you achieve your goals? I mentioned that I, and my group called “ The Unsteady Hand Mob “ , really needed a printer… and three days later a lovely man arrived on my doorstep carrying a Fabulous printer, an extra ink cartridge and a box of paper… 5 x reams of it! I was blown away! Rotarians are amazing and do so much for the community and now have helped me and my group.I can see the printer being used extensively in the coming months as I try to reach another of my goals . I’m putting together a hospital and medication kit for PWP to have in hand when they go into hospital. Something along the lines of the free kit available in the US but unfortunately I can’t make it free. There is a heap of work to be done and my printer will be ‘flat out’ printing draft after draft until I can get it right. I am blessed that the Davis Phinney foundation is letting me use some of their solutions to ideas and so I’m not having to ‘reinvent the wheel’ so to speak.
There was also a lot of interest in the book I have recently written explaining what happens to a person who gets PD..written from a child’s point of view which was very pleasing and validating.
doh! I’ve done it again! Written a title and then gone off on a tangent and not matched the title with what I intended to say…well,as the song says’ blame it on the Parkinson’s’ ! ( if you haven’t heard that song yet , check it out on YouTube)
What this blog was SUPPOSED to be about was …
I was talking to , well mainly listening to, a newly diagnosed lady over a cuppa the other day and as she was venting I saw that she was very distressed (understandably) and very stressed as well. It was obvious that she was totally overwhelmed with the diagnosis and had not given herself time to digest and accept it.She was doing exactly what I suspect most of us do…..push the thought of what life is going to be like and try to carry on as normal as possible, putting husband, children , other family, work, house chores, friends etc etc BEFORE looking after herself. She was saying Things like…well, “if I don’t do it, who is going to?” “ My kids need me to be strong and healthy and able to do everything I need to for them”, “my husband can’t do it in his own”,” I am weak and useless if I don’t do things like I did before”, “i am weak if I ask for help”, “what will other people think if I don’t do the things I’m ‘supposed ‘to do?”, “I can’t give up work, we need the money.”
The sad thing is that I’ve heard these things many times over the past few years as I have more and more newly diagnosed people wanting to come and have a cuppa and a chat. ( seems like my educating the community goal has lead to educating PWP as well)
but I digress …again…
what I told her and have told many before her is something that seems so simple and yet so hard to do……
STOP! Step back and really ask yourself…will the world end if I don’t do ………* insert thing here* ……. Right now? ……
Will I be struck by lightening if I don’t….. * insert “ ….until tomorrow?
if you keep pushing and pushing yourself you will burn out. And then be of no help to anyone.
PD has taught me many things that I hadn’t expected…
it’s taught me that: I DON’T have to be superwoman, I DON’T have to do everything perfectly, I DON’T have to sweat the small stuff, It’s ok to take time out for myself and as hard as it is to acknowledge IT’S OK to ask for help. Most people are only too happy to lend a hand IF they know what you need.
Now obviously, this doesn’t only apply to us with PD…everyone need time out for themselves.
So know that you have permission from the universe and STOP and smell the roses and while you are there marvel at the little things . Watch a child exploring their world and take a leaf out of their book!
Now, I have to check that everything’s ready for my fundraiser lunch on Friday, check with my volunteers that they’re ready, finish writing my grant proposal because it’s due next Wednesday, work out what I’m doing for the boxing session on Tuesday because tomorrow I’ll be too busy getting prep done for my art class on Thursday.
Now if only I could heed my own advice…I said I’d learnt it…..but I haven’t yet learned to do it all the time….I told you it’s hard! 😜
ps I DID heed the advice a little…I went for a sit by the pond at the park at the end of the street after my garage sale today……when I SHOULD have been vacuuming and washing the floor!
cheers and have a restful day.
Sue. Xx
BobbleHead Nanna 