Hello


#1
Well here goes... I think I have had this for a wee while now but I finally went to my doctor last year to get a answers and I was diagnosed with pd,it still came as a shock even though I had a suspicion of what it was I'm 43, I have told my ex wife as she is a nurse and noticed the signs but I haven't told my kids or any of my friends,I'm just worried that when I tell people it will change how they will change the way they interact with me,I don't want people to start felling sorry for me and change how they act and treat me,I want everyone to just keep doing what they are doing now.I was wondering how other people went about telling their family and friends?

#2

Hi there,  i only ventured onto this site last week, i was diagnosed with PD nearly 5 years ago but had symptoms for a couple previous. I have always been aware of my body telling me when it wasnt quite right as i have Crohns disease too since my early 20's. putting up and adapting to bad health has become a way of life,.  i say that in a positive way!  My family know me and im no quitter so the news although difficult and shocking for them, they also knew i could cope with it at that moment in time. I am careful what i read and view on here because i am the kind of person who copes well being semi ignorant, everyone is different so if you have witnessed or read something then its in your head! and its going to happen! but that might not be the case. Get on with being you! family and friends will be concerned but will follow your lead. I said to my family "it is what it is, some people dont get the chance to discuss a future i do" I suppose i am 7 years in, i am stiff at times and have a tremor, the good points are that i keep fit too!  I do body combat classes where i hardly notice symptoms of pd, I am currently training for 'The Ride the night' 100k night time bike ride through london in May, before that Lincoln 10k. Last year i did the 10k and Tough Mudder which was fantastic. Dont give anyone a reason to treat you anyway other than you want to be treated.  Good Luck

Barnowl1


#3

Hello Col43....Be your self ..some people will be a bit differant at first, then i found things settled again ..if you explain to the family and close friends what you know ,everybody else tend to have a chat then get on with there lives ..i didnt shout above the rooftops about being diagnosed but ,i didnt hide it aswell ...after dx you might feel a bit lost ,and it hard to really believe ,i still do and that was nearly a year ago for me..but you does ease and youll sort it......chin up


#4

Hello

totally up to you, but I would tell people. It is also a chance to educate others about PD. Done that to my neighbour a few weeks ago. PD is not all about the tremor, that is usually the least problematic. It is all the other symptoms, like tiredness, stiffness various pains and aches and in my husbands case also sweatiness when out and about.

what you will find out is it is a hugely varied illness and everyone has slightly different symptoms at different times. Good Luck


#5

Hi hello best to get it out there and let people know what's going on with you then at least if you muck anything up because of your pd at least you will be helped and forgiven I still work and the workforce and the boss are very understanding and if I have a bad day they don't seem to worry ,the more people that know I think the better you will get on good luck and all the best Ian 


#6

Hi Barnowl 1

"...some people don't get the chance to discuss a future. I do..."

Love that quote!!

blessings

Ian David


#7

Hi col43

Instead of 'telling' them - your friends and family - would you feel more comfortable writing them a letter? That way you get to think about what you want to say, and how to say it. As one member said - it is also your chance to educate your friends. Yes, be honest but you can also point out the positives.

What you are saying is you're concerned about your friends' reaction. By writing a letter - email - you give them chance to digest your news. Someone whose first reaction is fear... given time might adapt.

With your children I would sit down with them and give them the opportunity to ask questions... either then or later.

Give yourself time. Do it when you're ready. 

I wish you well.

every blessing

Ian David

 


#8

Hi Col43, 

Welcome to the online community, I hope you enjoy your time here getting to know our other members. 

It's understandable that you'd have some concerns about talking to family and friends about your diagnosis, if you'd like to talk to someone you can call the helpline on 0808 800 0303 for information and support. 

It might also be useful for you to read our information on Talking to people about Parkinson's which you can find by clicking here. 

All the best, 

Kat


#9
Thank you all for the kind words and support,I sat down with my kids yesterday and had a talk with them.I'm just taking things one day at a time and see what happens and thanks again for the replys.

#10

Hey col43

Good stuff! How did it go when you told your children?

I had a breakdown back in 2014 and I made a decision that when I felt it right I would share it with people. Actually, the response has been really interesting! Especially among men - we're not comfortable sharing perceived "weakness" - two guys told me they had had a breakdown and one said his brother had. I just feel the more we can get it out there the sooner we will break the taboo. Look at Alzheimers, the society and a rather well-known author have done amazing things getting Alzheimers into the public arena - and into our hearts and minds!!

We're not all the same. Some of us are pretty private people. Telling your family may be all you need to do right now. If your PD is under control you might be able to leave telling others - especially your boss - till a later date.

Take care.

Ian David

 


#11

Hello, col43:

I was diagnosed at 49, but it took five years to get to that point. You will experience all of the stages of mourning - denial, anger, bargaining but with acceptance you may feel comfortable to disclose to close family and friends first. For me, the disclosure brought a sense of relief - I didn't have to hide my resting tremor.  Next on the list was my disclosing my condition to my employer at the time, and they were not surprised. This lessened my anxiety even more. Obviously, its a personal choice, and I didn't do it in order to feel sorry for me - I disclosed my condition for me!!

I wish you well


#12
Barnowl as you are doing the Lincoln 10k does that mean you live near Lincoln ?? BB

#13

Hi BB, Yes I have lived in Flat old Lincoln all my life,  North Hykeham just outside. Why do you ask, ?


#14
Guess what I live in Birchwood lol x

#15

Oh My Goodness!   why shouldn't you hey? sometimes you think that you are the only one for miles who has this!  Well thats not too far to hook up for a coffee now and again is it, That is of course if you would like to? I presume you go to Lincoln county for PD treatment do you? I go to Leicester strangely enough but they're very good! I think, but i have nothing to compare the treatment with so i hope they are! If you fancy meeting up then let me know. BTW i admire your recent bravery, it  takes strong women like you to make things happen and progress in treatment for illnesses such as these. Well done and Thank you x


#16
Barnowl Thankyou and i would love to meet you. I will private message you my mobile number and i am planning on Bering in town on Monday afternoon xx

#17

Goodo, you go first!  not sure how to PM on here x


#18
Just click on message on panel on the left of this page and it should take you straight to them xx