I had just written a reply and the computer closed down to do up dates. Just got on again.
I have heard your voice and the voice of others affected by OCD after taking medication many times and their have been a number of threads on the subject.I do not want to make this thread tro be one of them, because that was not what I was talking about.I was talking about rejoicing in the fact that the gentleman on the Jeremy Vine show was leading a fruitful life and his talk was met by bitterness and sarcasm.I also intimated that in the past there used to be people who posted positive, uplifting accounts of their life,which is probably helpful to those newly diagnosed.I just wondered if similar replies to the responses met by this broadcast were what prevented them posting now.Indeed,when my husband (Morrisman) posted a while ago saying how after seven years he was still enjoying life it was met with a similar reaction. OK, life has dealt some people a very hard knock and people should be made aware of what can happen, but please do not try to drown out the experiences of many who despite Parkinson's lead rich and fulfilling lives.Rejoice for them rather than be bitter.
Here we go again............
Surely everybody's experiences and opinions are of value on a forum such as this. We are all free to read the posts and take out of them what we wish. So called "debate" is all very well but surely people should feel that this is a safe and welcoming place to post, especially those of us who are perhaps not used to expressing themselves in this way.
These days it seems if you voice an opinion you risk being put down or subjected to ridicule or ignored,if anyone posts to agree with an opinion the situation of "them and us" quickly develops.
Which presumably is the reason why people stop posting and become onlookers.
Which is a pity because this forum is a lifeline to more than one person.
As for me? I'm going to crawl back under my rock.
Toots
Surely everybody's experiences and opinions are of value on a forum such as this. We are all free to read the posts and take out of them what we wish. So called "debate" is all very well but surely people should feel that this is a safe and welcoming place to post, especially those of us who are perhaps not used to expressing themselves in this way.
These days it seems if you voice an opinion you risk being put down or subjected to ridicule or ignored,if anyone posts to agree with an opinion the situation of "them and us" quickly develops.
Which presumably is the reason why people stop posting and become onlookers.
Which is a pity because this forum is a lifeline to more than one person.
As for me? I'm going to crawl back under my rock.
Toots
Hi All
I didn't hear the discussion on the JV show so I can only comment on the postings regarding this. Its great that a PWP is doing so well and would like to share it with the world but IMHO I think the show should also have mentioned the negative effects of PD and it would possibly have balanced the subject.
I didn't hear the discussion on the JV show so I can only comment on the postings regarding this. Its great that a PWP is doing so well and would like to share it with the world but IMHO I think the show should also have mentioned the negative effects of PD and it would possibly have balanced the subject.
Just click Cutiepie's link and drag the pointer along towards the end as it is the last interview on the programme.
Anyone,whatever their situation, can dwell on the negative aspects of their condition.It takes a brave and wise person who can liberate themselves by concentrating on the here and now and rejoices in what they can do and what they do have.
One can be positive as an ideal but when one has time to say what exactly the problems are one should try and do so. I was pleased when I saw there was to be any broadcast about PD whatever it said but on reflection I agree that it probably had a negative affect on donations. I mean there are plenty of other disablements to donate to that won't let people even paddle let alone swim. I don't even see real understanding from people I know let alone the general public as to why sometimes I can stride out to the post box and other times i shuffle or have difficulty with balance, which even if only a slight symptom is quite incapacitating if one wants to sweep the front path. Be positive when talking to each other I say. I have been inspired by how people cope with travel, walking, cycling etc, but be negative when trying to get across why people should part with their money and give to Parkinson's UK.
.
ECD:
"Anyone,whatever their situation, can dwell on the negative aspects of their condition. It takes a brave and wise person who can liberate themselves by concentrating on the here and now and rejoice in what they can do and what they do have."
Ok, it's 4 years since I came off DAs. Two since the Crown dropped all the criminal charges against me. But as you suggest, let's concentrate on the here and now. Let's rejoice in what I can do, and what I do have:
1. I can wait 5 more days till payday, when I can have a decent meal again. Last night's dinner was a couple of Weetabix;
2. I can again try to persuade my landlord to fill in all the gaps where the rats get in. Our cost-effective cats have caught 10 in the last fortnight. The kitchen smells of rats' pee;
3. I can ask said landlord (ha ha) to put some insulation in the roof, fix the broken window or fit double glazing;
4. I can dream about having a holiday, the last was in 2007, and since then we haven't had a single night away from this hovel;
5. I can get a railcard and get a third off fares - well I could, if only I could raise the £20 up front;
6. I do have scores of relatives, none of whom will talk to me (since the DA fiasco, when I lost everything) because they simply don't believe my silly tale about "dopamine agonists". (This is where the BBC could have done some real good);
7. I do have a disabled wife, who battles on like an angel;
8. I do have the physical strength to get to my front door before collapsing from exhaustion;
9. I do have a good enough memory to remember my life a decade ago, with a successful career, big detached house by the sea in Sussex and plenty of creature comforts, and a sound enough mind to wonder what the hell I did to deserve this;
10. I have little else, apart from scores of friends on here in exactly the same boat.
Sorry, didn't mean to dwell on the negatives. As you say, REJOICE!
Ray.
.
ECD:
"Anyone,whatever their situation, can dwell on the negative aspects of their condition. It takes a brave and wise person who can liberate themselves by concentrating on the here and now and rejoice in what they can do and what they do have."
Ok, it's 4 years since I came off DAs. Two since the Crown dropped all the criminal charges against me. But as you suggest, let's concentrate on the here and now. Let's rejoice in what I can do, and what I do have:
1. I can wait 5 more days till payday, when I can have a decent meal again. Last night's dinner was a couple of Weetabix;
2. I can again try to persuade my landlord to fill in all the gaps where the rats get in. Our cost-effective cats have caught 10 in the last fortnight. The kitchen smells of rats' pee;
3. I can ask said landlord (ha ha) to put some insulation in the roof, fix the broken window or fit double glazing;
4. I can dream about having a holiday, the last was in 2007, and since then we haven't had a single night away from this hovel;
5. I can get a railcard and get a third off fares - well I could, if only I could raise the £20 up front;
6. I do have scores of relatives, none of whom will talk to me (since the DA fiasco, when I lost everything) because they simply don't believe my silly tale about "dopamine agonists". (This is where the BBC could have done some real good);
7. I do have a disabled wife, who battles on like an angel;
8. I do have the physical strength to get to my front door before collapsing from exhaustion;
9. I do have a good enough memory to remember my life a decade ago, with a successful career, big detached house by the sea in Sussex and plenty of creature comforts, and a sound enough mind to wonder what the hell I did to deserve this;
10. I have little else, apart from scores of friends on here in exactly the same boat.
Sorry, didn't mean to dwell on the negatives. As you say, REJOICE!
Ray.
.
I too believe in a positive approach to life and have got on with my life over the past 9 years. It has been a very different life to what I had pre diagnosis. Parkinson’s wrecks lives.
I am pleased that some PwP can swim or run or cycle but they do not represent the majority of PwP who struggle with some of the basics in life. Their high profile suggests that Parkinson’s is not a major issue, a minor inconvenience, and 10 years will see life little changed. It implies that a cure is not urgent as its no big deal to live with-a positive attitude and a few pills and you are fine.
They say all publicity is good publicity but I disagree, this interview gave out a very unbalanced picture of Parkinson’s and indeed some incorrect information. It should have made clear that this was one man’s story and not typical of how Parkinson’s affects others-it’s a designer disease
I wish him well but suspect that along the way he may find that 10 years post diagnosis may not be quite how he sees it now. He has barely started.
I am pleased that some PwP can swim or run or cycle but they do not represent the majority of PwP who struggle with some of the basics in life. Their high profile suggests that Parkinson’s is not a major issue, a minor inconvenience, and 10 years will see life little changed. It implies that a cure is not urgent as its no big deal to live with-a positive attitude and a few pills and you are fine.
They say all publicity is good publicity but I disagree, this interview gave out a very unbalanced picture of Parkinson’s and indeed some incorrect information. It should have made clear that this was one man’s story and not typical of how Parkinson’s affects others-it’s a designer disease
I wish him well but suspect that along the way he may find that 10 years post diagnosis may not be quite how he sees it now. He has barely started.
"Anyone,whatever their situation, can dwell on the negative aspects of their condition.It takes a brave and wise person who can liberate themselves by concentrating on the here and now and rejoices in what they can do and what they do have."
I do concentrate on what I can do now! I agree negative thoughts don't help but that doesn't mean that we should hide away or ignore the serious problems this illness causes.
Positive thinking can only go so far
I do concentrate on what I can do now! I agree negative thoughts don't help but that doesn't mean that we should hide away or ignore the serious problems this illness causes.
Positive thinking can only go so far
i have said all I want to say on the matter.I will let each person's words speak for themselves.
For those people who do not want bitterness to destroy their lives perhaps they would like to listen to the words of Jon Kabat Zinn especially his talk "As Good As It Gets" which can be found on You tube
"I have said all I want to say on the matter. I will let each person's words speak for themselves."
Quite right, enough said.
But then, 3 minutes later, off you went again! Make up your mind!
.
"Necessity accelerates innovation."
There was no necessity message in that interview to in any way help stimulate the massive investment needed to fund research for a cure. Quite the opposite.
There wasn't much reality either.
Interviews like this do nothing to help the search for a PD cure.
And on a minor point a brain scan cannot diagnose PD!!
There was no necessity message in that interview to in any way help stimulate the massive investment needed to fund research for a cure. Quite the opposite.
There wasn't much reality either.
Interviews like this do nothing to help the search for a PD cure.
And on a minor point a brain scan cannot diagnose PD!!
I agree with what you have said Jazz.
Ray - you CAN take heart in the knowledge that you have helped a lot of people on this forum and that you DO so even though you are struggling day to day with your own battles.
I am all for positive thinking but I agree that making out that Parkinson's is just a little hiccup will do little for fundraising and public awareness. I have friends and family who, having seen the nightmare that we have gone through, cannot believe that there is no publicity about it.
We all love to hear positive stories and know that people are coping well despite their health problems but there should certainly be a balance.
Ray - you CAN take heart in the knowledge that you have helped a lot of people on this forum and that you DO so even though you are struggling day to day with your own battles.
I am all for positive thinking but I agree that making out that Parkinson's is just a little hiccup will do little for fundraising and public awareness. I have friends and family who, having seen the nightmare that we have gone through, cannot believe that there is no publicity about it.
We all love to hear positive stories and know that people are coping well despite their health problems but there should certainly be a balance.
Hopefully there will be some redressing achieved when my autobiography hits he bookshops, folks. Aiming for the Christmas market to make everyone miserable!
Ray.
Ray.
Will you be doing an interview on the Jeremy Vine show? Hope so.
That's a good idea.............
ECD, i don't take kindly to labelled by you, as being negative and sarcastic...!!!
My comments were in relation to those who's lives are seriously impacted by OCD! More often than not these individuals see a marked worsening in their PD symptoms, due to stress and relationship breakdowns caused from the fallout of OCD problems. The point i was attempting to get across was, there is little understanding or support, or indeed empathy towards this significant group of PwP from the general public. Furthermore while its great we put a really positive spin (via the media) on living with Parkinson's Disease, it makes those who's lives have been affected feel even more isolated and alone.
Being a realist i understand it is going to take a long time for the public to even begin to get the message about OCD and links to medication, let alone show any understanding or empathy? However what I'm becoming increasingly disappointed by, is the complete lack of support, understanding or empathy being showed by certain fractions of the "I'm alright jack" brigade on this forum.
I wonder if your life had been completely ruined by OCD issues, would you be so quick to judge and label others............
all the best
bluey
My comments were in relation to those who's lives are seriously impacted by OCD! More often than not these individuals see a marked worsening in their PD symptoms, due to stress and relationship breakdowns caused from the fallout of OCD problems. The point i was attempting to get across was, there is little understanding or support, or indeed empathy towards this significant group of PwP from the general public. Furthermore while its great we put a really positive spin (via the media) on living with Parkinson's Disease, it makes those who's lives have been affected feel even more isolated and alone.
Being a realist i understand it is going to take a long time for the public to even begin to get the message about OCD and links to medication, let alone show any understanding or empathy? However what I'm becoming increasingly disappointed by, is the complete lack of support, understanding or empathy being showed by certain fractions of the "I'm alright jack" brigade on this forum.
I wonder if your life had been completely ruined by OCD issues, would you be so quick to judge and label others............
all the best
bluey
Hello forum
I am David Greaves from Pedal for Parkinson's the guy you've been talking about. I've just spent a month cycling 2000 miles to raise funds to find a cure for you (and me) Four of us have Parkinson's and I have cried in a morning watching all of us struggle to get dressed. We all drool, fart, pee ourselves, get constipation, can't swallow, smell or taste, fall asleep in our dinner etc etc etc just like you. This ride has put a big strain on our relationships. We've been through a battle and we all bare the scars, but we'll win the war. I have talked on radio stations all around UK and Ireland and I have been given time to paint the full picture of living with Mr P, but on Jeremy vine you get one sentence and you say what you can squeeze in. I was waiting on hold to be included but didn't get called. They control the agenda. You do your best.
It isn't alright for me, I am no different to you. I hate Parkinson's but I am doing something about it. We are all at different stages with this problem. but EVERYONE CAN HELP. Yes you in the wheelchair. Were you at the end of the path when we cycled past. waving your flag?
I am David Greaves from Pedal for Parkinson's the guy you've been talking about. I've just spent a month cycling 2000 miles to raise funds to find a cure for you (and me) Four of us have Parkinson's and I have cried in a morning watching all of us struggle to get dressed. We all drool, fart, pee ourselves, get constipation, can't swallow, smell or taste, fall asleep in our dinner etc etc etc just like you. This ride has put a big strain on our relationships. We've been through a battle and we all bare the scars, but we'll win the war. I have talked on radio stations all around UK and Ireland and I have been given time to paint the full picture of living with Mr P, but on Jeremy vine you get one sentence and you say what you can squeeze in. I was waiting on hold to be included but didn't get called. They control the agenda. You do your best.
It isn't alright for me, I am no different to you. I hate Parkinson's but I am doing something about it. We are all at different stages with this problem. but EVERYONE CAN HELP. Yes you in the wheelchair. Were you at the end of the path when we cycled past. waving your flag?