Friends and Parkinson's


#1

Hi everyone

 

We’re looking for both positive and negative stories for the next issue of The Parkinson magazine, about how your friends react to your condition – and what you think the best thing someone can do for a friend with Parkinson’s. Do you ever feel your friends treat you differently because you have Parkinson’s? Perhaps, unintentionally, they’ve assumed you can’t do certain things, or lack patience. Perhaps they have tried to do too much for you sometimes. What are some of the nicest or most helpful things your friends have done for you? And what’s the best advice you’d give to someone whose friend has just been diagnosed with Parkinson’s?

 

Thanks

 

Alex


#2

Hi Alex

OH has PD and can`t tell you himself but the nicest thing has been the friend who understands that confusion and memory loss are cutting you off from a lot of people.  He visits and always brings something to help a conversation along.  It might be something he`s made, pictures of his grandchildren, a memento of your days playing rugby together.  He speaks slowly and gives you time to get your words out.  You are the centre of his attention while he`s here and you so enjoy his visits.

 


#3

I have a friend who has been fantastic; I don't know if her approach would suit everybody, but it works for me.
She:
listens but doesn't push for details.
doesn't pretend or give false reassurances.
laughs with me - and at me when I deserve it.
talks about other stuff and asks me for help.
tells me her problems and worries.
doesn't let this define me.
feeds me and gets me a taxi when I slip up and hit the wine.

I know other friends may find the whole thing trickier, but I'm working on telling them because I need to be a good friend too - and that means not over-loading one person.


#4

Hi Alex I have so me fantastic friends and some whom simply do not have a clue what to say to me

A example is from work when I mention my dx to some one his reply was I knew someone who died of that, to which I took a very deep breath and replied Parkinson's is NOT terminal. Oh I know for a fact she died of it was the then response. I then proceeded to ask how old the lady was it turn out she was 89 when she passed away therefore I said old age just might be a factor here and Parkinson's make other health problems  difficult to treat............. He still insisted she died of PD in the end I had to walk away , Some people stare at me when they see me out on a walking stick I just wish that had the courage to ask me what is with the stick you don't look out enough. Then I would willing tell them, My good friends daughter is someone who has become very close to me she cant do enough to help me and even to the point of when I am ill she will even come and keep me company she is Caitlin, I feel  like a member of the family to which point I can go there when ever I want I even have a key both Sandra and Caitlin are now my chosen family. I don't do that with every one I meet it take a lot of trust to give the tilted friend let alone chosen family.Even when I had a accident Sandra came with me to the hospital and stay with me for a good four hours until they had finished, Sandra trust me to the point when I went to London one weekend Caitlin came with she knew while in my care I would treat her as my daughter she did not hesitate when I asked her if Caitlin could come to London with me straight way it was yes no problem . Now an arrangement is in place for us to go back soon. She's a great girl I think of her as my niece she tends to be like a carer towards me even though I not at that level. I am more than happy to help with your post there is so much more that just this story Karen Smith has my number and Kathryn McLoughlin feel free to talk to them about me.My name is Karen Missenden they know I am happy to share my story,

Kindest Regards Karen 


#5

Hi Alex,

Don't know why but I am not receiving your posts until about a week after they are sent.

The worst people around are those that tut and complain in the queue at the cash desk when I'm trying to pay.  The nicest are those in the supermarket who come up beside me and whispers 'can they help me' and just go away when I say no thank you.

The thing I hate is when I'm with people that are my friends and family but they haven't seen me for a while and I can hear the gasps when I am 'off' and I try to get up and walk.  

My close friends have all learnt how to deal with me and they are sympathetic when I need someone to talk to and just let me get on with things when I'm OK.

I would tell someone that on diagnosis that they should read the literature about PD that the charity provides and then make up their minds as to what they are going to listen to and what they need to leave alone at the moment and not think about until they get to the stage of needing more advice.

To get me to go out in the evening my friends are really great and we book a table in a restaurant much earlier than they usually go out so we finish earlier and I'm still 'with it'.