Hey Jupiter. Fancy meeting you here. If I knew how I'd give you a smiley face but I don't know how to. Let us into the secret please,
and I'm not being patronising, I really want to know how.
Keep taking the tablets. Cheers Christopher
and I'm not being patronising, I really want to know how.
Keep taking the tablets. Cheers Christopher
Hello All,
Jupiter, I just love the story about the patches.
I am Panda and I am married to Pat, who was Diagnosed with PD in June 2006. He is also a tablet controlled Diabetic.
It is difficult at times to cope with strangers' reactions. PD is a very misunderstood condition. The tremor is the thing most associated with PD and it can be very embarrassing. Pat finds that it is made worse by stress and he also has head tremor I, for one, was not so very aware of the non- motor symptoms which as you know are insomnia, swallowing difficulties, fear in crowds or strange places, depression etc etc.
I am a retired Physio and should have known more really, but it was not my particular area of practice. I had not had any experience of PD since the bad old days in the 60's, when the treatment of the condition was lacking, to say the least.
One of Pat's main problems is balance and his walk looks as though he is drunk at times. This does get some funny looks, but we try not to take any notice, because we just know that it is not really intentional and only a very natural knee jerk reaction on the part of others.
The other thing to say is that I go with him and support him in stressful situations, but it must be much worse if you are on your own. Let's hope the continuing increase in media coverage of PD will raise awareness and more understanding in others.
Kind regards,
Panda.
Jupiter, I just love the story about the patches.
I am Panda and I am married to Pat, who was Diagnosed with PD in June 2006. He is also a tablet controlled Diabetic.
It is difficult at times to cope with strangers' reactions. PD is a very misunderstood condition. The tremor is the thing most associated with PD and it can be very embarrassing. Pat finds that it is made worse by stress and he also has head tremor I, for one, was not so very aware of the non- motor symptoms which as you know are insomnia, swallowing difficulties, fear in crowds or strange places, depression etc etc.
I am a retired Physio and should have known more really, but it was not my particular area of practice. I had not had any experience of PD since the bad old days in the 60's, when the treatment of the condition was lacking, to say the least.
One of Pat's main problems is balance and his walk looks as though he is drunk at times. This does get some funny looks, but we try not to take any notice, because we just know that it is not really intentional and only a very natural knee jerk reaction on the part of others.
The other thing to say is that I go with him and support him in stressful situations, but it must be much worse if you are on your own. Let's hope the continuing increase in media coverage of PD will raise awareness and more understanding in others.
Kind regards,
Panda.
Hi Panda
I agree with you and think that knee-jerk reaction is often the case. My husband Les has very bad dyskenesia and people who don't know him pass remark that he must be drunk. The one that really bothers me is when so many people tell me that there have been so many advances in the treatment of PD therefore he shouldn't be moving like that (almost as if I have neglected to obtain the wonder drugs evidently available). So many people seem to be an authority on PD and meds available 'cos they read it in the paper or watched something on telly about it.
Sorry - heading for a real grumble - guess that in the early days I really wanted to believe it too.
Cheers
Heather
I agree with you and think that knee-jerk reaction is often the case. My husband Les has very bad dyskenesia and people who don't know him pass remark that he must be drunk. The one that really bothers me is when so many people tell me that there have been so many advances in the treatment of PD therefore he shouldn't be moving like that (almost as if I have neglected to obtain the wonder drugs evidently available). So many people seem to be an authority on PD and meds available 'cos they read it in the paper or watched something on telly about it.
Sorry - heading for a real grumble - guess that in the early days I really wanted to believe it too.
Cheers
Heather
Highlander,
I couldn't agree more if one more person tells me that they can do wonders these days how well I look and how much more their mum, granddad, etc had to suffer with PD I will thump them. I always try to tell them its not a bloody competition to see who can have the worst symptoms!
I had a guy tell me that I should get one of them boxes in my brain instead of taking tablets all the time.It seems that the wife had seen something about it on telly and they thought they would tell me about it I kept my cool and explained to him that it wasn't quite as simple as that but I know he didn't believe me.I know knowledge is power but a little learning is a dangerous thing.
I couldn't agree more if one more person tells me that they can do wonders these days how well I look and how much more their mum, granddad, etc had to suffer with PD I will thump them. I always try to tell them its not a bloody competition to see who can have the worst symptoms!
I had a guy tell me that I should get one of them boxes in my brain instead of taking tablets all the time.It seems that the wife had seen something about it on telly and they thought they would tell me about it I kept my cool and explained to him that it wasn't quite as simple as that but I know he didn't believe me.I know knowledge is power but a little learning is a dangerous thing.
I agree people can be patronising and often dont realise they're doing it, I suppose it can be difficult for people who know someone with PD to get the right balance between saying how are you or not mentioning it all. My line manager can be quite patronising, when I told her and two of my close colleagues, she said yes I had noticed you had a tremor in your arm. I was a bit too stunned to say anything but after thought you bloody haven;t, sometimes you dont notice if I;ve had my hair done (cut and coloured) or if I've been on holiday. Anyway I say very little to her now as she always has an opinion/expert on every subject. all well that's my moan over but one thing PD has taught me is to have more empathy for people who aren't well.
I think most people mean well (and I say this as one not given to kind thoughts about people). One of my oldest friends saying doubtfully 'Well you seem OK' didn't inspire confidence but somehow reinforced the idea that I was somehow making it up. Even hubby made one or two iffy remarks early on. It's difficult for everyone.
But one has to be touched by the thoughtfulness rather than critical when one of my husband's friends turned up to meet him with Tom Isaacs book 'Shake before Use' which he bought for me (hard back version) in the hope that it would encourage and inspire me. Sadly it won't. I have almost finished reading it now. I have never been one for walking or for good works. Tom Isaacs is admirable and I am grateful for people such as he but I was a useless lazy toad before PD and PD isn't likely to change that. I am still the person i was. That's what people need to know.
But one has to be touched by the thoughtfulness rather than critical when one of my husband's friends turned up to meet him with Tom Isaacs book 'Shake before Use' which he bought for me (hard back version) in the hope that it would encourage and inspire me. Sadly it won't. I have almost finished reading it now. I have never been one for walking or for good works. Tom Isaacs is admirable and I am grateful for people such as he but I was a useless lazy toad before PD and PD isn't likely to change that. I am still the person i was. That's what people need to know.
...and reading about someone who is coping better than I am is somehow depressing.
I've just finished reading this thread from the beginning.I'm amazed!
English Country Dancer(1)(probably have this modded out...)-I'dhave told them to 'F*** o**.'
I don't usually use such language, by the way....
English Country Dancer(1)(probably have this modded out...)-I'dhave told them to 'F*** o**.'
I don't usually use such language, by the way....
Good morning all.
When people say things like "poor you" or "how awful" and give you that pitiful woe is you kind of expression makes me a little angry on bad days. Good days I take them on. "Why? It's not the worst thing to have" "It doesn't kill you!! It just F**** up your life".
"you don't die of PD you die with it"
I must say though I use it when I have to
"I have PD it sure as hell does not have me"
Tina x
When people say things like "poor you" or "how awful" and give you that pitiful woe is you kind of expression makes me a little angry on bad days. Good days I take them on. "Why? It's not the worst thing to have" "It doesn't kill you!! It just F**** up your life".
"you don't die of PD you die with it"
I must say though I use it when I have to
"I have PD it sure as hell does not have me"
Tina x
Hi Tina
"I have PD it sure as hell does not have me" is a great quote, thank you.
You sound like you have been upset, you ok?
Jacks
"I have PD it sure as hell does not have me" is a great quote, thank you.
You sound like you have been upset, you ok?
Jacks
Hi there
I've been wondering why certain friends have been very quiet recently - have now discovered that relative has been telling them to give me some space 'cos hubbies pd really bad - this made me furious, although I understand the intention was well meant I do not need or want people to organise my life and decide when I need company or not.
Am I over-reacting?????
I've been wondering why certain friends have been very quiet recently - have now discovered that relative has been telling them to give me some space 'cos hubbies pd really bad - this made me furious, although I understand the intention was well meant I do not need or want people to organise my life and decide when I need company or not.
Am I over-reacting?????
No
no
Same as when I wet to a place with two friends and i said to one 'where has x gone?' she said ' to get you a wheel chair.' X returned with the chair and feeling i must be a slow nuisance i used it. But i had never used one before and no-one asked me if i wanted one! Unbelievable.
Hi Jacks
Sorry haven't replied but have been very busy.
My best friend is an alcoholic and a homosexual with a compulsive nature. I kidnapped him two weeks ago so we could start detox but unfortunately he had 2 fits and ended up in hospital. so while he was in hospital I tried to arrange everything, so that when we got back to London all appointments had been made for relative people.
I am so tired I can't sleep.
Take care
Tina x
Sorry haven't replied but have been very busy.
My best friend is an alcoholic and a homosexual with a compulsive nature. I kidnapped him two weeks ago so we could start detox but unfortunately he had 2 fits and ended up in hospital. so while he was in hospital I tried to arrange everything, so that when we got back to London all appointments had been made for relative people.
I am so tired I can't sleep.
Take care
Tina x
Hi all.
I've just come across this thread from over three years ago, and I believe it still raises valid issues about how strangers react to us PwP, and how we PwP in return respond to those reactions.
We PwP can often feel uncomfortably patronised, and at times excruciatingly embarrassed, by the comments or actions of those so amazingly ill-informed about PD. And it is oh so easy to dismiss such folk as ignorant buffoons without saying a word until after they’ve departed, at which point we can safely mutter about their thoughtlessness in absentia.
But we will only make genuine progress if we can find the strength to set aside ignorance (on BOTH sides) and start real, constructive dialogue. By just keeping silent when we encounter such comments or actions by strangers we miss a golden opportunity to put the layman on the right track, and leave them with real understanding of a condition of which they previously knew nothing. And why should they have known anything? From their viewpoint (one of having no specific interest in PD more than any other condition which they’ve never encountered) PD is one of a hundred mystery ailments, sicknesses and disorders which nobody has ever bothered to explain to them. They can then enthusiastically disseminate their new PD knowledge across their own circle of friends and family, to all of our benefits.
A stranger who embarrassingly kisses the hand of a PwP when departing as though he were a leper is not doing so maliciously or mockingly. That stranger MEANS well, and we should accept that for what it is – a caring, loving gesture, however out-of-place. Surely it is not outside mankind’s capability to explain the situation to a stranger in such a way that they are not offended, but will know better next time?
If one says nothing at all about the hand kissing one is giving it the green light as a socially acceptable mode of departure when saying goodbye to people "in that condition", and the stranger will go on doing it forever. Spend some time with the uninformed explaining this condition we so enjoy – cheerfully and non-aggressively. We deserve it. Go on, grasp the nettle, it doesn’t really sting at all! You may even make some new friends along the way.
I've just come across this thread from over three years ago, and I believe it still raises valid issues about how strangers react to us PwP, and how we PwP in return respond to those reactions.
We PwP can often feel uncomfortably patronised, and at times excruciatingly embarrassed, by the comments or actions of those so amazingly ill-informed about PD. And it is oh so easy to dismiss such folk as ignorant buffoons without saying a word until after they’ve departed, at which point we can safely mutter about their thoughtlessness in absentia.
But we will only make genuine progress if we can find the strength to set aside ignorance (on BOTH sides) and start real, constructive dialogue. By just keeping silent when we encounter such comments or actions by strangers we miss a golden opportunity to put the layman on the right track, and leave them with real understanding of a condition of which they previously knew nothing. And why should they have known anything? From their viewpoint (one of having no specific interest in PD more than any other condition which they’ve never encountered) PD is one of a hundred mystery ailments, sicknesses and disorders which nobody has ever bothered to explain to them. They can then enthusiastically disseminate their new PD knowledge across their own circle of friends and family, to all of our benefits.
A stranger who embarrassingly kisses the hand of a PwP when departing as though he were a leper is not doing so maliciously or mockingly. That stranger MEANS well, and we should accept that for what it is – a caring, loving gesture, however out-of-place. Surely it is not outside mankind’s capability to explain the situation to a stranger in such a way that they are not offended, but will know better next time?
If one says nothing at all about the hand kissing one is giving it the green light as a socially acceptable mode of departure when saying goodbye to people "in that condition", and the stranger will go on doing it forever. Spend some time with the uninformed explaining this condition we so enjoy – cheerfully and non-aggressively. We deserve it. Go on, grasp the nettle, it doesn’t really sting at all! You may even make some new friends along the way.
What you need is some phrases ready in your arsenal of witty repartee.
when asked "What's the worst part of parkies?"
Something along the lines of
"Having to tell nosy nipsies to **** off as they tend to find it offensive."
Especially the ones who say " It could be worse " and the ones that don't hand over any cash, make my blood boil.
when asked "What's the worst part of parkies?"
Something along the lines of
"Having to tell nosy nipsies to **** off as they tend to find it offensive."
Especially the ones who say " It could be worse " and the ones that don't hand over any cash, make my blood boil.
the newsagent has noticed that I tend to go to his shop at about 6am. When others are not about We chat in broken English (he is from Sri Lanka) This morning I tended to his small son whilst he slept with his his head in his hands
Same here I just picked this thread . I make a point of telling people that my husband has Parkinsons because they generally know as much about it as we did when we had the diagnosis which was absolutely nothing .
I wish we had been given more information advice in the first place . It was only because I picked up the leaflets when we visited the consultant and read as much as I could . I don't know how my husband would have managed without me because he was feeling so confused and unable to read for himself .. ( because of the Parkinsons).
Unfortunately he does get embarrassed stressed which doesn't help him at all ,cannot cope with indepth conversations , every case is different as you all know
I think most people get it mixed up or assume it is something to do with dementia because they don't usually know any younger sufferers . I tell them that my husband is just the same and you dont judge a book by its cover . I ask them to take their time with him and give him space , he is much better if he is leading the conversationand and knowing that they would like to help I thank them and say I will always ask if he needs any assistance .
You will always get uncaring self centred people and I fully understand how it can make you feel . In fact even my sister when she asks how he is and if he is any worse she say's well it could always be worse . We are not looking forward to the day if it does happen . She always says keep your chin up , then bends down and looks into his face saying very slowly HOW ARE YOu <
She isnt an uncaring person . He needs lots of assistance but we don't go telling evryone else I try to keep his dignity ..
I wish we had been given more information advice in the first place . It was only because I picked up the leaflets when we visited the consultant and read as much as I could . I don't know how my husband would have managed without me because he was feeling so confused and unable to read for himself .. ( because of the Parkinsons).
Unfortunately he does get embarrassed stressed which doesn't help him at all ,cannot cope with indepth conversations , every case is different as you all know
I think most people get it mixed up or assume it is something to do with dementia because they don't usually know any younger sufferers . I tell them that my husband is just the same and you dont judge a book by its cover . I ask them to take their time with him and give him space , he is much better if he is leading the conversationand and knowing that they would like to help I thank them and say I will always ask if he needs any assistance .
You will always get uncaring self centred people and I fully understand how it can make you feel . In fact even my sister when she asks how he is and if he is any worse she say's well it could always be worse . We are not looking forward to the day if it does happen . She always says keep your chin up , then bends down and looks into his face saying very slowly HOW ARE YOu <
She isnt an uncaring person . He needs lots of assistance but we don't go telling evryone else I try to keep his dignity ..