15-04-2013, 09:33 AM
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Parkinson's Awareness Week 2013
People with Parkinson's have told us their top 5 things that people can do to help.Please be patient
It takes me longer to do things. Give me time - I'll get there.
Understand communicating can be difficult
If I don't smile, I'm not being unfriendly - I just can't move my face. Talking isn't always easy, but if you listen carefully you'll hear me.
If Parkinson's makes me unsteady, please don't assume I'm drunk.
A little understanding would make life a lot easier.
Please don't stare or make assumptions
It's upsetting if you stare or think the worst. If Parkinson's makes me unsteady, please don't assume I'm drunk.
If I'm not working it's because I can't. There is currently no cure and my symptoms will get worse.
Ask if you can help
I can tell you if I need your help. It might take me a while to speak, so please be patient. Don't try and move me if I freeze - I could fall over.
Take a little time to understand Parkinson's
copied from PDS site
15-04-2013, 09:35 AM
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Re: Parkinson's Awareness Week 2013
As a Parkinsons sufferer I welcome the awareness week. I have been mistaken for drunk, insolent , unfeeling and a few other things,. Before I used a stick or frame or wheelchair ,people crossed the road to avoid me. However, the vast majority of folks are very helpful & understanding. PD affects different people differently . PD is actually a group of related neurological disorders & each individual is prescribed a different cocktail of treatments..
15-04-2013, 09:43 AM
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Re: Parkinson's Awareness Week 2013
I knew a man who had PD and he was one of the nicest people anyone could wish to meet; it didn't take long to stop noticing his tremors. He was my next door neighbour at that time and he's one of the people I really missed when we moved. I think a lot of ailments are misunderstood simply because people haven't encountered them before on a regular basis. Thankfully, our society is making attempts to raise awareness of various conditions and that can only be a good thing.15-04-2013, 10:00 AM
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Re: Parkinson's Awareness Week 2013
You have raised an important point & one which I sometimes forget. That is to say that I am probably more self conscious of my symptoms than most people I meet. MY family totally ignore my shaking & watery speech and the fact that I can change from "normal" to "struggling" in quite a short time.THis makes it difficult to plan journeys & suchlike. It's very tempting to give up some days & tell nurse Gilian to leave me at home while she goes of shopping or whatever,without me.
15-04-2013, 10:04 AM
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Re: Parkinson's Awareness Week 2013
No, don't do that Robert. I holed up in the house for 2 years and it's not a good frame of mind to be in. I have another friend who has MS and Crohn's and she still does all her own shopping and housework (going on holiday with them posed a few problems though!). I remember once chatting with the chap next door about some noises I'd heard the night before and I was telling him how frightened I'd been and I said to him 'I'm not kidding Wally, I was like this' and shook my hands to show terror - then realised what I'd done; he laughed his head off at the look of horror on my face! I guess it proved to him that I'd stopped noticing his ailment and, ergo, accepted his friendship from him as a person. So don't give up - I know coming to terms with things can be very hard and seem so unfair but you are lucky to have people who love and care about you.
15-04-2013, 02:33 PM
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Re: Parkinson's Awareness Week 2013
Originally Posted by Alan Cooke
->
A very good friend of mine suffers from it but he forces himself to carry on as normal, he even comes on 6 mile walks with the rest of us once a month.
As I say, it affects every one in a different way.
A positive attitude works wonders.
16-04-2013, 01:10 AM
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Re: Parkinson's Awareness Week 2013
My closest woman friend was diagnosed with it two years ago at age 63 and she is battling it as cheerfully as she can. She alo changes from normal to not so normal, depending too on the time she has taken the medication. She was one of the prettiest, attractive women you could imagine and I think that part of it has hit her hard too but she is positive and battles on.
16-04-2013, 03:22 AM
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Re: Parkinson's Awareness Week 2013
Good thread Robert, especially the points about being patient and not making assumptions. I have MS and walk with a cane to keep me steady. People do look at you more kindly if you are using one, that's for sure. I'm also cognitively delayed which means it takes me a bit longer to catch on to new information and process it, or to remember something.
16-04-2013, 09:08 AM
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Re: Parkinson's Awareness Week 2013
When we moved here in 68 my neighbour had it, he shook. in 2001 and a friend was diagnosed but he never shook but walked very oddly, he also had Louie Body so don't know if that's what caused odd walk. I saw him and his wife running in the park and thought Tim must be feeling good today then realized something was wrong. He couldn't stop himself from running and even our combined weight couldn't, in the end he managed to throw himself on the ground.he also hallucinated but don't know if it was the medication caused it. Keep your chin up Bobby Boy you're doing OK.
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