Talking to people about Parkinson's


#1

Hi all, 

I'm a Resources Editor at Parkinson's UK . We're in the process of updating our information sheet, 'Talking to people about Parkinson's'. 

I am really keen to include some new personal experiences so I thought the forum was the place to ask. 

  • How did you tell your family about your diagnosis? Friends? Colleagues?
  • Did you tell everyone straightaway? Or did you tell different people at different times? How did you decide who you told first?
  • Did anything help you when you did tell people - information? A positive attitude? 
  • Have you had to tell people unexpectedly? For example, at airport security? 
  • Do you have tips for telling someone you have Parkinson's?

Look forward to hearing from you!


#2

Hi Karen

I think it is all very individualistic. I have been very open about my Parkinson's (even on dating sites!). Personally, I think it is counter-productive to not tell people; by not telling people you deny to yourself what is happening in your own body and with something like Parkinson's other people can see it anyway! Better to clear the confusion and clear the air so you both can move on and stop wondering ("does he/she know"; "has he/she got something wrong with them"). Many times I have told someone and they have said, "my Mum/Grandfather/Dad etc has Parkinson's".

I prefer to inhabit and live alongside Parkinson's instead of trying to fight its reality in my life. Telling people ironically helps me see beyond the disease and focus on what is left of me instead of only seeing what Parkinson's has taken away. Its like I peel off the mask by telling people and can just be me.

Also in no way can you control how people react to you; believe me I've tried. Pesky free will gets in the way! If someone reacts badly to my disclosure of Parkinson's I try to educate them. If that doesn't work I shrug my shoulders and move on. It is their loss if all they can see is the disease. 

How people react to you has nothing to do with your value or your self worth. It actually shows you what the other person is truly like.

I do understand the impulse to hide it though. It is a scary thing to say, "I have Parkinson's"...then you could say, "But I am not Parkinson's"

dr jonny

www.dialoguewithdisability.blogspot.co.uk


#3

As Dr J says, it's all very individualistic. My PD is very mild (most of the time) and I don't need help or special measures. So, telling people would be, I think, a bit like swanking and to no purpose. No-one's tackled me on it (yet) so I don't see the need to explain.

All but my boss, actually, who did notice something amiss a couple of weeks after dx. I chose to come out to him - there seemed no point in lying, though I did ask him not to spread it around. I guess there will become a time when that tactic of confirmation won't work. And then, well I won't know what I'll do.

Semele


#4

Semele, you have put my feelings into words.  I was formally diagnosed nearly 4 years ago but diagnosed myself 6 years ago.  However, the medication is working so well at a relatively low dose that my consultant has made my next appointment for a year’s time instead of six months.  She did arm me with an avalanche of phone numbers and email addresses but, like you, I don’t feel the need to shout about my condition to the world.  When it becomes obvious, I will no doubt change my mind, but that time hasn’t arrived yet and – who knows – it might never arrive.

I know any announcement I made would be met with the utmost kindness by friends and colleagues, but I don’t want them to be concerned about me or to start treating me differently.  There are times I would like an excuse for lapses in memory or jumbled speech or occasional stiffness but I just brazen those things out.  There will be some who will say I’m living a lie but I don’t really see what it has got to do with anyone except those closest to me.  I don’t go announcing my cup size or how much I have in the bank, or anything else I consider private, to all and sundry so why should this be any different?  

Having said that, I would never criticise anyone who chose to tell the world immediately after diagnosis.  As has been said, we are all different but, in my case, by saying nothing, I strive to look ‘normal’ which makes me feel ‘normal’ and that, in turn, allows me to live ‘normally’ – which is good enough for me for the present time.


#5

Hi Karen,

I agree with Dr Johnny. We are all different – personality, family grouping, age, background, set of beliefs, current circumstances, etc and that will affect how we approach it.

I believe I’m of the ilk where telling people helps make it real for me and then I can move on with my life. I am much more comfortable doing it in the written word than verbally.

In my case, I was dx’d out of the country staying with my family, so they were the first to know. My hubby got a phone call, and my kids got an email.

As it was December, anyone I wrote a Christmas card to found out.

I emailed or rang some special friends, but was not up to emailing the others, due to the extreme summer heat and Parkinson’s apathy. So most found out gradually on Facebook, when I posted about my MRI, etc.

Back here in the States, I still have not told other social groupings whom I don’t know well. One example is my neighbours. I am not close to any of them, so it would feel weird to just bring it up.

I do have a home-made PwP card in my wallet, but as yet haven’t felt the need to show anyone, as I still look pretty “normal”, more normal than I did this time last year.

Telling people (strangers or neighbours) is still in my future, and I am a little preoccupied with how I will do that. I have been advised to just casually mention it, something like,”BTW, I have Parkinson’s.”

Another PwP and I did toss some ideas around as to how to do it with humour.

One idea was to wear a PD Awareness t-shirt to the neighbourhood soup night. Or to talk casually about my tremor. Or say something about my support group meeting.

One of our support group members has a large PD Awareness tattoo on his forearm, and he has needed to show it to people when he has bad dyskinesia.


#6

I agree with all that has been said. There is no right answer, only what feels right.

I do get terribly confused when others talk about wanting to be "normal". What does it mean to be "normal"? I think by labelling yourself as "normal" you are locating yourself in comparison with other people; "because the majority are like this then I find comfort in being like them". But this is so context dependent it becomes meaningless; in a group of non-sufferers you are "abnormal" but in a group of sufferers you are "normal" - but you have stayed the same! These labels, "normal" and "abnormal", miss you entirely.

Instead of being "normal", why not be yourself?

dr j


#7

“Instead of being "normal", why not be yourself?”

But that’s precisely it!  I am the same ‘myself’ that I have been for 66 years – a private person who has never discussed her ailments with anyone for fear of boring them (although I always seem to spend quite a lot of time sympathising with other people’s health issues).  When the time comes that I have to start discussing my condition with others, I will need to become a different person, and that will be “abnormal” and quite scary to me.

My use of the word “normal” means normal for me, not normal compared with others.

 


#8
Hi Lily I was a bit confused when you wrote "I strive to look normal...." This implies somebody else is looking and there is some external standard you are striving to achieve. Plus if by normal you mean yourself you don't have to strive to be yourself. You just be (PD and all) Dr j

#9

Hi Dr Jonny

Whilst I don’t wish to split hairs over this – particularly with a philosopher – I do think there must be other introverts out there who feel the same as me and who understand what I am driving at.

You say that I don’t have to strive to be myself, but I do.  ‘Myself’ is the person I was before PD when I didn’t have to talk about my ailments.  You can argue that I am in denial etc and tell me that I am not that person any more, but I am.  I can’t suddenly become an extrovert who opens up and wears a T-shirt proclaiming their condition or who announces “I have Parkinson’s” to an impatient checkout queue (not that I have a problem with anyone who does if it works for them) any more than I can adopt the role of ‘sufferer’.

As we all agree, we are all different, but I do think telling the world is more difficult for some than others.

Thank you for giving me the opportunity to analyse my reluctance to 'come out'.  I'm finding it very interesting!

 


#10

Hi Lily

You say, "'Myself' is the person I was before PD" but that is unfair and sets you up to fail to be you. I do understand the way we mourn the loss of ourselves when we were diagnosed with PD. But trying to be the person you were in the past is self-defeating because you live in the here and now. But, equally, acknowledging PD doesn't mean becoming PD (you don't have to wear a t-shirt proclaiming "I AM Parkinson's") - something of you survives the diagnosis and this disease. "Coming out" means seeing that there is room in your life for you even with PD. My fear of telling others was I would disappear beneath a mask of PD. But, if you are able to see yourself in the present living alongside PD then this will allow others to see you too. When you "come out" as a PD sufferer you have to "come out" to yourself first and if you survive and don't become PD (it is a risk) then it will be easier to handle other people's reactions; it is seeing they miss you entirely when they cast you in the role of PD.

Anyway these are my thoughts. I hope they are interesting...

dr jonny


#11

Thank you, Dr Jonny; I always have a lot of respect for your opinions and I admire your courage. 

Maybe I haven't 'come out' to myself yet, but my view is that once you tell others, you can't untell them.  (If in doubt, say nowt.)  

For now, I’ll just keep on taking the tablets and avoiding anything headed "Prognosis".


#12

Thank you.  O no you said  the P  word ! Prognosis is the biggest emotional challenge of PD.it drags you into an unknown future and leaves you there, literally reacting to nothing. it can send you crazy! The future is unwritten. you can`t rewrite what isn`t written! live in the now!

Take care Lily

dr jonny


#13

Hi Lily and Dr J

Just to say I really enjoyed this dialogue, conducted with politeness and respect, but also honesty and clarity. We should use it as a model for our discourses! (And yes, I agree with both of you.)

Regards

Semele


#14

Hi all, 

Thanks so much for your responses to my post. User insight is always so valuable in our resources. 

I trust it will be ok to use some quotes from your posts in the new information sheet, so readers can read some 'real-life experiences' alongside the advice provided.

Best wishes,

Karen 


#15

So long as they're not identifiable, fine by me. (I'd prefer to be able to OK any usage.)

Semele


#16

Hi Karen

Fine by me too, with the same caveat as Semele's.

Good luck and best wishes

Lily


#17

Good Morning Karen ,

First to know after diagnosis was my immediate family , I did not have to tell them all  - they spread the word quick without me .

The same day I did the worst thing I could have done and went for a pint in my local ,after a few drinks I broke down and again my friends all told each other later.

I was working  as a white van man driver at the time and a few months after one of my colleagues asked me if my shaking hands each morning was a result of my drinking  too much the night before .  I realised that work management were the  next who needed to be informed . I immediately got  stopped from driving until I convinced them that  had I clearance from the DLVA and was cleared on the company insurance .  

The only time I inform other people now is those who ask mre directly ,  or try to help me , and those that do not ask but stand watching open mouthed as I try to move somewhere . Eg , Getting on and off an airplane or clearing airport security . British Airways staff are a real mix , some understand and listen , some do not have a clue what I am telling them and some could not  care less .

I have family in Thailand and used to visit them regularly .   The Thai people are very inquisitive and ask me direct what the problem is when they see me struggling .  When the dsykinesia takes over and music is being played they smile and join in with me , assuming I am moving to the beat .

Probably the worse people to tell are the ones who see me doing ok one day with  the meds and then see  me struggling the next day , they assume the wrong thing .  I get comments such as '' He is putting it on '' and '' He was ok before .''

I do not bother to tell them but my wife takes offence if she hears people making  rude comments ,laughing at me , or  assuming I am drunk in the middle of the day . She tells  them basically to mind their own business ,.

In my situations I think some people have to be told , but most do not . I would never go out of my way to bore anyone who does not need to know .

I have more stories to tell about my parkies experiences later .

Cheers ,  Peter