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.

your mate/caregiver knows whats going on in our twisted brains. Even now I find myself explaining to my wife and kids, whats up with my latest problem. Our PD is a dynamic, ever-changing disease, and we all mistakenly assume our caregivers some how know all about us. I know I can be down-right scary at times.
everyones level of understanding is different. My wife waits for me to ask for help, my 16 year old daughter knows instinctively when I need it.
All my kids and wife, instinctively grab for me when I am about to take a tumble.
Neither way is wrong, just unique to the person involved.
SO my advice, is to prewarn your care-giver about your problems, or failing that, tell them what was going on as soon after the fact as possible.

Charlie

It would all be so much easier if our caregivers were strong and wise and real grown ups, and if PD did not work on our emotions the way it does, so we could be strong and wise and grown up.
Your 'emergency' and the response it got is awfully familiar, Steffi. It's not easy to live with a mimosa that wilts at any hint of blame in the most innocent and hintless situation.
What can we do? Laugh, I guess......when it's over and all is forgiven...again. Thank goodness for ample, overflowing humor.

birte

GREAT to see you back.Have missed you.
Thanks to both you and Chasmo for your responses. By the way,my 2nd example was fictitional..my hujbby didn`t say that to me.[Just had to make that clear...doh]

Another confusing scenario can arise in the change from spontaneity ..to we PD ers having to plan a little more.This may not always be the situation but personally,I know that somedays I don`t stand a hope in hell of just "springing into acton" at a request to "go shopping" or "going out for an evening"
This one is tough on our partners because yes...to a degree the drudge of planning might negate the fun of the outing.
So...if the response to a suggestion like the above exacts a response from your PD `er such as;
" Can`t we go another day"
or
"How long will we be?"
or even silence
then it probably means;

"I would love to but I need to know if there are loos there..."
"I have to think about my next medication time"
"I don`t want to be "off" in the middle of town"

and the silence could just be us silently planning if we have the stamina
to cope.

I know that I have made excuses galore in the past when asked if I want to go to a concert,or see a film.
My first thought is "how long will it last" as I know for certain I couldn`t sit or stand through a 3 hour concert with ease.

I now politely refuse and explain that my condition would not be conducive to such an event if the length of the entertainment is going to be a problem.
It is kinder to our carers to be upfront...not saying that many of you aren`t but I know that for years I invented excuses which didn`t ever ring true.

It is also confusing when we are suddenly "off" and "on".
One minute capable,the next comatose.
What is THAT all about?
Well...quite simply it`s about Parkinsons disease. Period .
I have been in a situation where one minute I am swinging hedgecutters as if they are made of air..the next minute I can`t lift a knife to butter bread.

So so frustrating .But sadly so true of this illness.

Steff
x

I've not been dealing with the overt symptoms of this monster disease for as long as you, but your description of the "PEE ALERT" reminded me of what happened in the Dallas airport a year ago in February as my love and I were changing flights on the way to the Parkinson's Congress in Washington.

We were standing in the concourse trying to decide whether we should go to another level in order to catch a tram to the gate for our connecting flight. The "great urgency" struck me as I was standing waiting for her to return from a few steps away as she was asking directions from airport personnel. This was my first such emergency in such a public place. My reaction to the bearly controllable bladder contractions was to make a bee line for the nearby "loo" without letting her know what was happening. Unfortunately, she was some distance away and did not see my dash to the restroom. When I had taken care of "business" and returned to the crowded concourse, she was almost beside herself with fright and anger over my sudden disappearance. I felt really guilty and thoughtless that I had put her through that .

This painful experience caused us to be more mindful of the need for each of us to communicate, even in such sudden emergencies.

Robert

I am new to the neurotalk board. I have read a few of your postings and am blown away by the depth and understanding . I feel as if you had read my mind. I had never really thought about the communication aspect of me vs my family. Shouldn't they just know how I feel? Boy have I got a lot of soul searching to do. Thanks
paulie

I am new to the neurotalk board. I have read a few of your postings and am blown away by the depth and understanding . I feel as if you had read my mind. I had never really thought about the communication aspect of me vs my family. Shouldn't they just know how I feel? Boy have I got a lot of soul searching to do. Thanks
paulie