Q: I am new to this PD thing – how did you come to terms with it…

Answer – first posted on HealthUnlocked – Parkinson’s Movement Community

Hi XXX

At the start I found it useful to read everything I could get my hands on, just to begin to understand the condition. There are a huge range of motor/non-motor symptoms but we don’t all get all or even most of them… its a curious disease in that respect. So from “Parkinson’s for Dummies” to Michael Fox’s first book through a wide range of books in between, topped up with internet browsing, I got stuck in to enlightening myself!

I would suggest that, unless you are already battling with severe symptoms, right now just continue on with your life as if you hadn’t been given any disease label BUT at the same time, read, enlighten yourself and become your own expert – don’t be down-hearted if you discover that most medical people know little more than the basics about parkinsonism/PD, it is one among so many complex conditions they see. Make sure your neurologist is a parkinson’s expert, if possible, but even if they aren’t, make sure you can work with whoever you see.

Your job, as I see it, is to keep yourself as fit, as energetic, as rested, as entertained as possible and as symptoms encroach, adapt and modify how you do things and, if medication is prescribed, then take it and monitor how it helps. These days, thanks to amazing advances in medication and the understanding of the condition, with the right drugs, physio, speech therapy and your own motivation, life expectancy is pretty much as it would have been without the diagnosis. Obviously there are some odd variants of the condition and the disease does progress differently in each of us, but you are still the “you” that you were before the neuro pronounced the diagnosis… what’s changed? If he’d said “we’re not sure and would like to see you again in 3m” how would you be living differently.

I just think it is important to regard parkinsonism as just one of those things that can/may interfere with how we live our lives but it isn’t our life! Unfortunately, at the beginning it really does seem as if everyone casts a long shadow over you and it really is only as you reach the annual milestones that you look back and realise that such gloom was a load of hogwash! If the diagnosis is correct, then yes you will see changes in the way you are but that’s true with just living and getting older anyway.

It is also important NOT to let that sector of society who seem to delight in other’s illnesses to bug you – you know the people I mean, the head-tilting “how ARE you” fake sympathy voiced ones, and those who can’t wait to tell you about their aunt or grandfather or whoever who just “died of parkinson’s”. In the early days of my diagnosis I still had a dog and walked regularly in a local park – one particular dog-walker fell into this category (her dog happened to like mine a lot and always made a beeline for him) and after about the third chapter of dire consequences, I simply asked her why she thought that I, with a recent diagnosis, would want to hear of the demise(s) of her relatives. She hadn’t been a friend, as such, so when she reacted crossly and stopped talking to me (her dog still loved mine, though!) it was no great loss. My point with this is, I suppose, don’t let other folks bring you down. If you find among your group of friends/acquaintances those who are, for whatever motive, making you feel fed-up … just gently spend less time with them. Surround yourself by all that is positive, upbeat and energetic and good for you.

The Cure Parkinson’s Trust is a great charity with its research focus but I would also recommend joining Parkinson’s UK (or visiting their website at least) as they focus on day to day living and have downloadable leaflets and really useful information for daily living if/as/when things begin to change for you. The two charities, in my life, complement each other in a synergistic way, it seems.

Does any of this that help or make sense?

@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!

2 thoughts on “Q: I am new to this PD thing – how did you come to terms with it…”

  1. This was the positive kind of reading I so need at the moment . I have not yet been diagnosed but I am pretty sure I have Parkindon’s and this long wait to see the neurologist is becoming wearing! There seems to be so much support available and I don’t feel I can access it yet!

  2. I have experiences some of the same tnhigs you have – my daughter’s seizures started before she was a year old, and through many different medications and test, there is nothing to show why she has seizures. The medications control the seizures fairly well but she because her most recent seizure occurred with the required amount of medication in her system, I am concerned again and really want an explanation. No one (her doctors) really seem concerned at this point but I’m with you – I want answers, I want an explanation as to the root of her seizures, and I want a cure!!!

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