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telling others.

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daffy

Hi

I'm sure Divine R is right in that many people don't notice what seems so obvious to PD people living with it  24hours a day. That's quite handy to remember. I remember years ago my Mom telling me off for worrying about what others thought with the remark "What make you think anyone's looking at you anyway!"

Festivals sound like fun enjoy them Frances and Jackson.

I like the idea of a badge, nothing too serious though or it embarrasses people maybe"Parkinson's onboard" ?

Talking of grandchildren. My six year old grandson  was showing me his toy dinosaurs and naming them "Brontosaurus, Stegosaurus, TRex, Fastasaurus...." I raised an eyebrow at the last one, quick as a flash he added "That one runs really quickly". Brilliant, that lad will go far.

daffy

Hi All,

Following on from all this I have hardly mentioned PD to anyone else around here. I have only actually told a few people - but word gets around doesn't it?

Anyway while walking my dog a few weeks ago I noticed another dog walker eyeing me strangely. We were on "Good morning " terms but that was all.

"I hope you don't think I'm being rude but...." he began and I quickly thought back as to what I could have done wrong recently - like you do.

"But some one told me you have PD."

I admitted was diagnosed last year.

"So have I. I was diagnosed 2 months ago"

And he was so relieved to talk to me, it was like opening the flood gates. He had been bombarded with tales of PD people in care homes, unable to get out and even advised to get a mobility scooter even though he can walk perfectly well enough!

With the result he seemed to be shutting himself down. Going out less, walking less out of plain anxiety, imposed on him by others. We had a little chat, I told him about parkinsons uk. 

Over the next few weeks I noticed he was extending his dog walking route to it's previous length, standing straighter and often walking  more briskly.

So all in all I am glad word did get around a bit and I was able to talk to him. And rather sad there are so many doom mongers about. We all know PD is not good news but that's no reason for people to go around scaring the living daylights out of folk.

DivineR

Hi Daffy, 

I've had the usual 'but you look so well!' line. Or 'that's the most miserable disease!' Great, thanks for that, I'll continue with my day happily shall I? 

People try to be kind but sometimes don't know the right thing to say. 

babesbrown

Hi everyone...As some of you know its  my husband with PD.

Diagnoised a year ago nearly. Very few people know and the ones who do either ignore it or make flippant remarks like "its only a bit of shaking" someone said because I work in care that "you will be ok cos your a carer already!"

It definately is the elephant in room....

My Husbands PD is very noticable now and he struggles with lots of things.

He has a very heavy manual job. He work colleagues are all younger and spend half their days on the phones on facebook etc. My Husband is old school and works hard therefore he gets lots of work put on him because the younger ones are lazy.

HR know about his PD due to his job involving driving,as does his direct manager.

In all the time he has had PD not ONCE has HR risk assessed him or asked how he is!

So he has decided on 18th August its a year since diagnosis,he is going to "come out" to everyone because of work. He is also going to ask to cut his hours at work.We are in the process of trying to get some help from the local PD nurse as he has not seen her since last November! Despite voice mails being left! If that fails we are off to see our GP for a supporting letter for him to take to work....

So I will let you know what the reaction is from people....

DivineR

Good Luck Babesbrown, 

It's the right thing to do, telling everyone can be hard but hiding symptoms is even harder and stressful. It's a pity your PD nurse isn't more on the ball. 

Cutting his hours can only help his symptoms. You said his PD is more noticeable and that may or may not be because he's overdoing it. I find if I'm stressed or tired I can hardly function but when I've done a  class or given myself some time out, I feel so much better. 

Wishing you both well. 

daffy

Hi Babesbrown,

Sorry to hear how your husband is struggling just now. I think a lot of people think PD is just a bit of shaking. Tiredness and stress definitely does exacerbate the symptoms. As you say being a hard worker people do expect you to keep going whatever.

But it's not something you can "work through" like a cold. You just get more tired and start making mistakes, which adds to the stress - (and bad temper in my case, which was not fair on my poor husband as we worked together)

I had to learn when to stop for a break; it's not a sign of weakness. Sometimes a short break is sufficient, other times you just have to pack it in for the day. It hard to accept at first but it does help - and there's always tomorrow, when with luck you'll feel rested and ready for another go.

cruisecontroller

When you have PD you can pretty much recognise the symptoms in other people but before I had DBS done I would make light of it and take the mickey out of myself to put people at ease.  In fact although I still have the Dystonic tremor I still poke fun at myself.  Yes, I have side issues, everyone does and everyone is different but we take things one day at a time, some are good, some are bad but we strive on.

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