In the media team we are planning our annual campaign Parkinson’s Awareness Week, which will run 20-26 April. We are looking for real life stories of people with Parkinson’s and their carers to help us highlight some of the negative reactions people with Parkinson’s can face when out in public.
Have you ever experienced negative reactions or people being rude to you in public because of your Parkinson's symptoms? Or, have you even avoided going out?
If so, we want to know how this made you feel.
You would need to be available on the week beginning 20 April and willing to talk to journalists about your experiences. Someone from Parkinson’s UK would always be available to support you with any media work you agree to undertake.
Case study work would involve:
• A chat with a member of the media team over the phone.
• Providing a photograph taken on a digital camera for us to give out to media.
• Being briefed with information and key messages on Parkinson’s Awareness Week by the Parkinson’s UK media team.
• Being willing to talk to journalists over the phone, face-to-face or even in a television studio – whatever you feel comfortable with.
You can speak to our PR team about your experience on 020 7963 9370 or email [email protected]
Does PUK not realise that many PWP, wIth a great deal to contibute in this area ,cannot even speak to their nearest and dearest on a daily basis, let alone speak to the media.
I guess then that this is only for those recently diagnosed who can still express themselves and not for those diagnosed many years ago.
Chatting with a member of the media team over the phone.................. a no no. OH cannot even speak to our daughters on the phone sometimes.
Chattting to a journalist over the phone or face to face in a TV studio................impossible. Stress makes P far worse and this would be a stressful situation.
OH could do neither of these situations and PUK should be aware that many PWP cannot do so.
Seems that PUK only want those who can express themselves eloquently to be the face of Parkinsons Awareness Week. How about letting the public see the real result of long term Parkinsons? MY OH sitting there on the phone or in a TV studio unable to get a word out, that's the reality. But hey, that would not be good publicity would it?
Why don't you express how your husband feels by acting as his intermediary.
It would be good to have his thoughts conveyed to us.
This is something I have begun to worry about. I can still chat on the phone, although I have noticed recently that strangers often get my name slightly wrong, or my address not quite accurate. I find it impossible to explain why, but there are things I can say on here as Mosie, that I would not feel comfortable talking about face to face, certainly not for public consumption.
Really it is about dignity isn't it?
I was at the dentist on Friday, only to have a crown fitted, the nasties had already been done with no problems. The dentist raised the chair for me to rinse, and the world rocked crazily. I transformed in an instant from someone who had arrived unaided on public transport into someone who could not stand straight let alone walk. My dentist is wonderful, his sister has Parkinsons, they got me a taxi, made sure the driver was OK he helped me into the house. There I have told you, I haven't yet phoned any of my children.
I don`t have PD and so it might be easier for me than for you to take to task anyone being negative or unpleasant about some-one with PD but perhaps when others post their experiences we might get together to suggest polite but firm responses to the situations. If we could feel confident enough to speak up eg to the impatient person tutting behind us in the queue, we could increase Parkinson`s awareness albeit one person at a time.
I once got stuck in ALDI
I imagine thats a phrase that causes a fair proportion of the readership to recoil in horror at the thought of entering the place let alone with the possibility they may not be able to get out.
Anyway there I was leaning on the packing shelf with my tins of puffin hearts and a four pack of Nosferatu lager trying to catch the eye of a member of staff. Unfortunately I MUST have picked the buSIEst time to sHOP. Apologies For the state of my writing as IM not fully practiced in the art of the forum trend for random words in caPItals.
Eventually I did get help and gave a pound coin to the manager with a request to bring a trolley as a makeship zimmer. tip never enter any supermarket without a ttrolley.
So I get to the car and realise I HVE TO TAKE THE TROLLLEY BSCK
this wass solved by an elderly lady who took itbackk for me an even brought the pound back
and get this when I Explained re the PD her brother had just been diagnosed too so what a coincidence
Generally that's how I find people - they arent sure how to approach you but as soon as you explain theyre helpful.
So best thing to do is explain and try not too panic.
Did you really venture out on your own to shop!! That WAS brave!! That is something I haven't done in a long while. I have to go with someone else cos I'd be gone ages, after struggling to get coin out of purse then struggling to get coin in trolley before I could even contemplate starting to shop! I won't bore you with the rest of the attempt to do this there would be too long a crowd at the checkout at the end of it!
It would be embarrassing
Well there you go, I can't even copy and paste your post so that I can reply, the basics of any forum, not on this one, unless anyone knows better?
Very happy to be his intermediary but disillusioned again with no response to my post to the OP by Admin .just by you.
A change of browser might help you to copy and paste. I changed to another browser as recommended by the IT person for the Forum and use Mozilla Firefox for this Forum whilst sticking to my Internet Explorer for everything else. \On Mozila it involves using keyboard shortcuts but you are clearly shown what to do every time you click on copy or paste paste. I was also given alternative instructions how to change settings my Internet Explorer but this seemed a step too far.
Generally I agree the new forum was like replacing a ford anglia with another ford anglia.
Except all the controls have been moved around and the one modern feature the heated rear windscreen has been removed.
Actually I was fibbing; I bought bread and sweetcorn, bait for the fish.
I stopped on the way to a lake 20 milles from where I LIVE. I could feel myself wearing off but I decided to risk taking my pill after shopping and off course got stuck.
I always have a plan for such situations eg mild peril "excuse me but i have pd etc.." real danger "HELP!!!!!!!!!!!!!!! "
i Usually wear off aat some point during the day mainly out of stupidity, body's screaming, PILL NOW!!!!!!!!!! and Im to engrossed in trying to cast a crust out without ducks spotting it or getting the line in a tree.
I find the physical symptoms relatively easy to deal with; an embarassedoctmy helps
The mental symptoms are just........well. MENTAL
I was diagnosed with PD fifteen years ago when I was 42. At the age of 52, I decided to buy a walking stick because my medication was up and down like a yo-yo and I needed something to keep me steady and that allowed me to walk, albeit haphazardly.
A remarkable thing happened.
People started to make allowances for my affliction without me needing to tell them. I used a walking stick, so I had a problem, so people changed their reactions to me in a constructive way.
If I am staggering along a street, people may jump to the conclusion I am a piss-head. But it I am using a walking stick, they are more likely to think I have a problem and that allowances should be made.
I can relate to so many comments made on this post. For me they are soooooo true. I especially connected with Leyther about carrying on with what I'm doing at the time I need meds. Very stupid because I go right 'off' and it takes ages to feel better again.
I feel really bad when I'm out and can't stand still. There will be a crowd of people looking at me and sniggering.
It's not fun for anyone but it's nice to know that there are people going through similar things and understand how you are feeling.
All the best
I found the best walking stick is the one from pduk shop with the words parkinsons on it people even stop andhave aa talk about pd.bestbuy
I would be delighted to contribute and have many tales of inconsiderate individuals behaving , well inconsiderately, two of these incidents involving heated confrontation,however its not all bad, I would say 70,30 the inconsiderate being the 70,it is sometimes so frightening, but I wont go into things yet or I will bore people, I already do talks at N T G H for the incoming young Docs and Nurses,and my only limitation is my voice fades,but as this is from home, a quick single malt usually does the trick, so just point me in the right direction Amy.
Kindest regards FED