Just thinking about ways we can help to cross the "I`ve got Parkinsons Disease...don`t speak to me" divide.
I `m not implying that this is the general scenario but it goes without saying that being given a diagnosis such as PD can,in many cases turn not only the patients world upside down,but that of everyone close to them.

The amount of adjusting.both on an individual level,and with a partner,can be gargantuan.Whilst the debates on research,causes,alternative cures etc are so very very important...when we close the pc down we have our daily needs to address,families,finances,"what`s for tea tonight luv?" the everyday little things,that in this scenario,all too often turn into massive hills to climb..and can so easily add to EVERYONES misery,despair and despondency.

I don`t know why I `m going here to tell you the truth.I have trouble getting inside my own mind let alone have any hopes of trying to understand anyone elses,but I feel there is a need to unlock or rather TRY to interpret those little phrases,looks,mannerisms,excuses,which we PD folk might have resorted to in an attempt to gloss over the truth,but which may have made life pretty difficult for our carers . And vice versa.
Our carers may have uttered something,or done something which might have
been well meaning,but which had us inwardly wanting to punch somebody`s lights out...all because neither party,wants to say it as it is,or because of gross misinterpretation.

It`s a bit like the Language of Love...Men are friom Venus etc etc only THIS is worse.You spend 10/15 years learning each others "speak" and then ..HEY HO..along comes Parkinsons and you have to start over again.

Let me give you an example. My husband and I are wandering down a narrow street in Ibiza,lazily browsing the shops,simply meandering through the crowds....and then ....MAJOR "PEE" ALERT. [Yes I know these are the things we don`t want to talk about but as any PD person will tell you..it is a BIG ISSUE..and one which dominates where we go,when we go,what we drink,when we drink...how much we drink..]

Well... I didn`t have time to say anything...I just needed to get my bum on a chair and FAST...so I did the only thing I could...I simply let go of his hand and shot off like a dart from a blow pipe.I knew where I was heading...but HE didn`t.I don`t know how many folk I took out along the way but all I could think about was a way to stop the inevitable.
I finally glued myself to a chair at a cafe I knew had a loo...and gathered myself in preparation to make the last few steps to the throne.
My husband meanwhile,bewildered and confused,turned up ,face like thunder, thinking I`d just thrown a wobbly over something he`d said or done.
I still couldn`t speak...such was the concentration needed to prevent a tidal wave.

Who was at fault? ME. I had tried to avoid telling it as it really was.
My husband just thought I was high on a game of NOW YOU SEE ME..NOW YOU DON`T... and quite rightly was NOT amused.

COMMUNICATION DIVIDE;
WHAT THE PD`er was saying.". Bloody hell..if I don`t go now he `s going to see another downside of this disease"
CARER THINKS; "What the blazes...? and is standing amongst bemused and amused onlookers who [ in his mind] are thinking.."You must have said the wrong thing there,mate for her to leg it like that!!!"

And then there are those tender moments,when some one growls

"What`s up with YOU then? You`ve got a face like a smacked ****!"
COMMUNICATION DIVIDE;
THEY THINK; Why is she looking so miserable when I`ve just spent a months wages on a Gucci watch?"
PD er thinks. " am longing to smile but nothing is working or moving right now.
And now I`ve been spoken to like that...I don`t feel like smiling anyway.,.even when my meds DO WORK!!!"

So...might it be useful to have some general "OMMUNICATION DIVIDES."

Not necessarily personal ...but examples of how each party might interpret a situation, Resolutions and Avoidance tips.