I realise we are a trillion billion zillion words into this tome, but I thought it worth slipping in a ‘ave you got it’ ‘just diagnosed’ page.
Firstly ‘ave you got it’ …
I lived with a lot of little symptoms, before my left arm stopping touch typing. I was made to go to the doctors and get a referral. All I would say is persevere, unless someone has seen PD before. You need to see the right person, as shock horror it is not just a tremor.
There used to be a sign in the doctors saying ‘do not come in with more than one condition at a time’. Ridiculous, PD is so many seemingly unconnected symptoms.
My first symptoms, left hand intermittently stopped typing, left arm shook occasionally, left hand sometimes had difficulty twiddling a fork. left leg had problems tap dancing (really).
Take any appointments you are offered – take them. The more people you speak to the more information you will have to deal with this ‘thing’.
Don’t feel hassled into starting medication straight away, speak to nurse, consultant etc. Take advice.
This is directed at the newly diagnosed. This is merely my opinion/advice of what I would say to myself in hindsight.
Every hour someone is diagnosed with Parkinson’s (the joke about being woken a 2am has already been patented by someone else 😉
If you ‘switched on’ Wednesday 11 April 2018, Global Parkinson’s Day, then crickey you must be thinking ‘wow wee Parkinson’s is the most popular, fashionable, talked about thing in the galaxy.’ ‘We’ are all over the computer.
Thursday 12 April 2018, you will be faced with the stark reality of, apart from a relatively few (in the whole scheme of things) people blogging, campaigning, reporting about PD, it is a niche disease . Especially if you happen to be young.
Be careful when you google – there are a lot of people out there who appear to be knowledgeable but may well just be a lass at home like me, and at least I admit that I know nothing and am learning all the time.
Your life has not ended, it has just got a tad more complicated.
Anyone newly diagnosed who has come across this blog may be a bit overwhelmed by the information and waffle. if you want to read from the beginning please go back and click on 2017 in archived blogs and then read if you wish.
As a wistened old sage of 50, and nearly 6 years of PD experience : a few pieces of food for thought
Day of diagnosis, remember …
You are still the same person as yesterday, only better armed, the ‘thing’ which has been worrying you has name, someone believed you – phew’
Don’t panic
Don’t google
It is not terminal (you die with it, not of it)
There is medication which can manage the condition and various ways of managing the condition.
You will find you have instant membership to a close nit community
How, Who and When you tell people, is a personal thing.
When you first get the diagnosis only tell ‘definite people’, ie you can’t ‘un-tell’ someone. Someone who you definitely want to know, this could be your mother, or Bert who works in the Banana Emporium I will not judge you. You can’t tell Nosey Nora from Number Nine about the PD as soon as you get home, and then wonder how the whole neighbour hood knows before you’ve cooked your oven chips.
Make an appointment with your GP for a weeks time.
Don’t google
Don’t give up any activity
Don’t give up exercise
Don’t give up anything
The moment of diagnosis has not changed you,
You are still the same person as yesterday, only better armed
You now have knowledge
This ‘thing’ has a name
You are not alone
‘You are not ill you have a condition that needs to be managed’
Day seven after diagnosis :
See your GP around this time
Ask about PD nurse
Not every health authority has a Parkinson’s Nurse. However, it is worth asking as if there is a breakdown in communication, you might not be told. Always ask.
Ask some questions about Parkinson’s specialist Neurologists :
Not all Neurologists are Parkinson’s specialists. Most do general neurology and have a specialism. So if possible ask about a Parkinson’s specialist neurologist.
Parkinsons UK
Spotlight YOPD (young onset charity)
The Cure Parkinson’s Trust
Hey hum Diddley dee
onwards and upwards
