hi everyone .I dont know if Im doing this right but here goes. Im 60 , just got my diagnosis , sort of guessed it was parkinsons after seeing my Mum with it. Mine started with my left leg dragging had all sorts of tests , seen the inside of an mri tunnel so many times, then about 3 months ago the tremor started! was referred back to neurologist who sent me for a dat scan, got the result yesterday, so now I begin my PD journey. Am feeling sad, scared and angry I suppose thats normal isnt it? Unsure whether to tell people or not, what did everyone do?
Hi Im Keith 51 yrs young and no spring chicken
First thing YOU will never be alone ( not on here you wont )
I wont lie to you , i was scared and angry too , its normal
but to be blunt get over it
being scared and angry wont make it go away and you will lose more of yourself
you havent changed as a person
the first 2 weeks after i was dianosed i put my family through hell
but even then they stood by me
then after i got over it i told everyone that knew me
i wasnt ashamed of it , its not that we asked for it
i lost a few of what i thought were friends acting like it was something contagious
but my real friends have stood by me and they knew that pity and sympathy is not what i wanted
i was and still am me , just as you are still you
because of the stutter ive developed my kids nick named me arkwright ( in open all hours )
even my friends call me that to
you have your medication , but laughter is your best medicine
i lose my balance sometimes and lost count how many times ive landed on my ass
you are on a new journey like all of us , there are hickups and delays in all journeys but thats all they are
there are days when i feel down , but i come on here everyday and there are many i chat with and have a laugh
on this site you can take the micky out of parkinsons
not everyday will be as you want but you will learn how to and with me and thousands of other here we will help you and help each other
take care my new friend
A warm welcome to the forum.
I agree with Keith, the fact that you’re feeling scared is completely normal following a diagnosis but you’re definitely not alone. Along with the support that you’ll continue to receive on the forum, we have a lot of information on our website for ‘newly diagnosed’ people with Parkinson’s that’ll be helpful to you.
You can also contact our helpline service and speak to one of our advisers who can arrange for a Parkinson’s nurse to call you back within 24 hours. They’ll be able to offer you more personalised support and advice.
I hope you find the forum supportive and engaging.
Its normal to feel a whole lot of different emotions over the next few months. Disbelief, anger, disappointment, fear and hopefully down the road, some form of acceptance.
For the first month, my partner and I kept the news to ourselves until we wrapped our head around it. Then i gradually told people. It takes away some stress of trying to appear ok. Do what feels right for you but be aware that you might have to look after the person you are telling. People react to your diagnosis in different and emotional ways.
I think most people feel all those things when first diagnosed. I spent the first few months with my head firmly buried in the sand. I accepted that I had PD but refused even to read anything about it. I looked at the Parkinsons UK website once and got so depressed that I avoided it for months. Then I finally accepted that I would benefit from knowing more about the condition and registered here and now I’m a bit of an addict though I don’t post very often. It’s been really useful in finding information about what is helpful.
I agree with @Divine1 about telling people. Go with whatever feels right to you. I told my immediate family (mum, husband, 2 kids) straight away but waited to tell other people. In fact I wasn’t really planning to but then a friend asked me why I was limping so I just decided it would be easier to tell people.
Reactions are interesting too but a lot of people don’t react very appropriately because they know very little about PD. I told my kids by email because they live on opposite sides of the globe so I couldn’t phone both at the same time. Their reactions were totally in character and therefore totally different. My daughter was on the phone within 30 seconds “Mum! What the hell!”. My son phoned 3 hours later with a much more measured response having spent the intervening time doing research on PD on the internet. They’ve both been very supportive though.