I find it hard to believe that a neurologist increases the medication willy-nilly. Surely, only if you, the patient, find life difficult on the present dosis will he/she suggest more of the same drug or adding another.You do not have to swallow everything they throw at you ! What is important, is, that you make it very clear what you want, (eg. better walking, mood, bladder control, etc), do your homework before the visit and write down what you expect to get out of this visit, so they can suggest treatment,but do realize you do not have to accept it, but can think about it and decide later. You are the customer .....
I would try and change neurologist if I felt we were not on the same wave length and not working towards the same goal.
Thank you Kate for your comments. I did not mean to imply that the neurologist took a cavalier attitude toward prescribing. It was the first time I had ever met with him, he qute obviously had concerns about my very coarse LS tremor. I am afraid that my carefully prepared list of questions went by the board when he suggested the possibility of neurological causes other than PD. So I quite accept responsibility for my somewhat uneasy state of mind. I will do better next time!
Hi.
Many patients feel very much out of their comfort zones at clinics, hospitals and GP surgeries, and feel they're surrounded by experts in a field about which they themselves know very little. This applies even if the patient is normally very assertive, and even if they've done lots of research themselves before the appointment, and brought a detailed list of concerns and notes with them.
Over the years a lot of consultants develop a superior attitude which conveys to the patient - within the first 5 seconds of entering the consulting room, and without a word being said - the following messages:
- "I need to deal with you quickly, I've got something important to do next."
- "You'd better not have brought a list with you."
- "Stop pretending to do your own research, and leave the clever stuff to me."
- "Whatever you say I'll ignore it because I've already decided what you need anyway."
- "Why is my appointment book full of peasants who think they know it all?"
I think you get my drift....
Ray.
.
Many patients feel very much out of their comfort zones at clinics, hospitals and GP surgeries, and feel they're surrounded by experts in a field about which they themselves know very little. This applies even if the patient is normally very assertive, and even if they've done lots of research themselves before the appointment, and brought a detailed list of concerns and notes with them.
Over the years a lot of consultants develop a superior attitude which conveys to the patient - within the first 5 seconds of entering the consulting room, and without a word being said - the following messages:
- "I need to deal with you quickly, I've got something important to do next."
- "You'd better not have brought a list with you."
- "Stop pretending to do your own research, and leave the clever stuff to me."
- "Whatever you say I'll ignore it because I've already decided what you need anyway."
- "Why is my appointment book full of peasants who think they know it all?"
I think you get my drift....
Ray.
.
Whilst I sympathise with your post Ray ,
I have never had that feeling when visiting my neuologist or GP let alone the PD Nurse.
Perhaps I'm just one of the lucky ones.
I just cannot bring myself to speak badly about them or the NHS which has me under their cure.
I have never had that feeling when visiting my neuologist or GP let alone the PD Nurse.
Perhaps I'm just one of the lucky ones.
I just cannot bring myself to speak badly about them or the NHS which has me under their cure.
Hi ncn.
I chose the words "a lot of" consultants deliberately, because this doesn't imply a majority or any particular percentage. I think many patients feel intimidated by their doctors, and respond to them meekly, as a result of their own upbringing as much as the aloofness of the practitioner.
When I was a kid in the 50s the only time a car appeared on the estate it would be the doctor's Bentley. And if mum knew he was coming round she'd spring-clean the whole house!
Given that the NHS had only been established a few years at that point, this awe was probably understandable, and ordinary working people felt privileged to be in the company of such pillars of the community. Nowadays they need to earn their respect.
Ray.
.
I chose the words "a lot of" consultants deliberately, because this doesn't imply a majority or any particular percentage. I think many patients feel intimidated by their doctors, and respond to them meekly, as a result of their own upbringing as much as the aloofness of the practitioner.
When I was a kid in the 50s the only time a car appeared on the estate it would be the doctor's Bentley. And if mum knew he was coming round she'd spring-clean the whole house!
Given that the NHS had only been established a few years at that point, this awe was probably understandable, and ordinary working people felt privileged to be in the company of such pillars of the community. Nowadays they need to earn their respect.
Ray.
.
.
Hi.
Everyone's opinion of the medical professionals around them is, of course, the product of their experiences. Over my 60 years I've encountered:
(1) My mum's death from brain tumours after the GP insisted for years that her massive headaches were down to "the change of life";
(2) My dad's death from inadequate monitoring in a nursing home;
(3) My own 7 years of hell on DAs, which cost me family, home, career and all assets. Total losses including lost future income/pension around £2m. All down to the Neuro failing to tell me about DAs & OCDs nad ignoring my wild behaviour;
(4) My current wife's first husband died because the hospital told him (when he complained of chest pains) there was nothing wrong with him, and sent him home. He died the next day, and it turned out his body was riddled with cancer;
(5) Her father died of a heart attack on the hospital corridor floor after he got no response when he rang the emergency bell and tried to crawl to the nursing station.
Hull Royal Infirmary is the worst hospital in the UK for death rates too, so no doubt that affects our scepticism.
Ray.
.
Hi.
Everyone's opinion of the medical professionals around them is, of course, the product of their experiences. Over my 60 years I've encountered:
(1) My mum's death from brain tumours after the GP insisted for years that her massive headaches were down to "the change of life";
(2) My dad's death from inadequate monitoring in a nursing home;
(3) My own 7 years of hell on DAs, which cost me family, home, career and all assets. Total losses including lost future income/pension around £2m. All down to the Neuro failing to tell me about DAs & OCDs nad ignoring my wild behaviour;
(4) My current wife's first husband died because the hospital told him (when he complained of chest pains) there was nothing wrong with him, and sent him home. He died the next day, and it turned out his body was riddled with cancer;
(5) Her father died of a heart attack on the hospital corridor floor after he got no response when he rang the emergency bell and tried to crawl to the nursing station.
Hull Royal Infirmary is the worst hospital in the UK for death rates too, so no doubt that affects our scepticism.
Ray.
.
Hi Ray,I fully understand your views about some of today's medical. I too have had similar experiences of the mishmash tactics of some so called doctors. It has left me very suspect of any medical intervention. I thought that we had come so far in medical advancement...so how is it that we see so many mis diagnosies and downright incompetance?
Glenchass
Glenchass
When you go to see the medics every six months. I would expect them to listen to me and treat me to their best ability. If they prescribe a drug and i take that drug then I am putting my faith and health in their hands,They're the experts .So if that drug doesn't suit me,or i experience really bad side affects then I should be able to be seen asp. This doesn't happen.
From my own experiences, the vast majority of medical situations I've witnessed - either my own or family/friends - have either ended up with totally negative outcomes (see above) or have at least included some cracking example of human incompetence.
At the less disastrous end of these are examples like consultants saying they'll write to my GP to alter my medication and forgetting to do so, GPs and clinics getting appointments wrong or miscalculating prescriptions, or my GP being totally unaware of the Sinemet shortage until I told him.
At the more serious end examples include my wife being taken down to theatre for a knee replacement and noticing just in time that her body had been marked up for a HIP replacement, the "loss" of medical records relating to my OCDs just before my court case (records were similarly "lost" when both my mum and my current wife's first husband died due to misdiagnoses) to the authorities "losing" me on the way from Hull to the psychiatric observation ward at Bridlington.
The last item was classic. It was during the worst stages of my 7-year DA/OCD experience, and followed a particularly nasty "domestic" caused by me which resulted in yet another 999 police call. The police concluded I was suicidal so took me to Hull Royal Infirmary at around 5pm. Unfortunately both of the PD Nurses refused to attend to me, so via Reception the police called the on-call psychiatrist and on-call social worker. They arrived around 7pm, examined me, and then found me a bed at Brid, and booked an ambulance to take me there.
The psychiatrist left at 8pm and the policeman 10 minutes later, leaving just the social worker to wait with me for the ambulance. At 8.45pm he asked me if I'd be ok waiting for it on my own, because he wanted to finish his dinner. I said "fine", so off he went, leaving a high-suicide-risk patient all alone by the door! Still no ambulance by 11pm, so I walked out unnoticed, got a taxi home, picked up my own car and drove to Brid myself, much to everyone's amazement, as I apparently wasn't expected! Since I was nuts at the time I could have just as easily have driven to the Humber Bridge (only a mile away) and jumped off.
There seems to be no limit to human incompetence!
.
At the less disastrous end of these are examples like consultants saying they'll write to my GP to alter my medication and forgetting to do so, GPs and clinics getting appointments wrong or miscalculating prescriptions, or my GP being totally unaware of the Sinemet shortage until I told him.
At the more serious end examples include my wife being taken down to theatre for a knee replacement and noticing just in time that her body had been marked up for a HIP replacement, the "loss" of medical records relating to my OCDs just before my court case (records were similarly "lost" when both my mum and my current wife's first husband died due to misdiagnoses) to the authorities "losing" me on the way from Hull to the psychiatric observation ward at Bridlington.
The last item was classic. It was during the worst stages of my 7-year DA/OCD experience, and followed a particularly nasty "domestic" caused by me which resulted in yet another 999 police call. The police concluded I was suicidal so took me to Hull Royal Infirmary at around 5pm. Unfortunately both of the PD Nurses refused to attend to me, so via Reception the police called the on-call psychiatrist and on-call social worker. They arrived around 7pm, examined me, and then found me a bed at Brid, and booked an ambulance to take me there.
The psychiatrist left at 8pm and the policeman 10 minutes later, leaving just the social worker to wait with me for the ambulance. At 8.45pm he asked me if I'd be ok waiting for it on my own, because he wanted to finish his dinner. I said "fine", so off he went, leaving a high-suicide-risk patient all alone by the door! Still no ambulance by 11pm, so I walked out unnoticed, got a taxi home, picked up my own car and drove to Brid myself, much to everyone's amazement, as I apparently wasn't expected! Since I was nuts at the time I could have just as easily have driven to the Humber Bridge (only a mile away) and jumped off.
There seems to be no limit to human incompetence!
.
Ray of Sunshine,
I am really sorry to read of your family's medical experiences. Your family has been very unlucky. I send you my best wishes for the future.
I am really sorry to read of your family's medical experiences. Your family has been very unlucky. I send you my best wishes for the future.
Really glad to have found this thread on the day I collected my 1st Mirapexin prescription. My neurologist acknowledged there were possible OCD side-effects but played it down and took the view that they could be controlled by simply reducing the dosage.
I am now going to need to think hard about when I start taking it and have the family on alert for any strange behaviours.
With no personal experience of OCD I am going to need to learn what to look for. The medical sites also list a wide range of other side-effects that may emerge from taking this treatment. From the high focus given here to OCD I am guessing that other side-effects are significantly less concerning?
I really applaud the formation of the action group. It might be possible to use the PUK website to conduct a survey to get more robust data about DA side-effects the clarify of information provided by consultants and the severity of the side-effects.
This could help the case for taking action.
I am now going to need to think hard about when I start taking it and have the family on alert for any strange behaviours.
With no personal experience of OCD I am going to need to learn what to look for. The medical sites also list a wide range of other side-effects that may emerge from taking this treatment. From the high focus given here to OCD I am guessing that other side-effects are significantly less concerning?
I really applaud the formation of the action group. It might be possible to use the PUK website to conduct a survey to get more robust data about DA side-effects the clarify of information provided by consultants and the severity of the side-effects.
This could help the case for taking action.
.
Jem: Many thanks, appreciated.
May you never: How's this list of DA OCDs for starters -
Hypersexuality
Crossdressing
Reorientation
Bondage
Masochism
Sadism
Zoophilia
Exhibitionism
Prostitution use
Internet pornography
Internet child pornography
Paedophilia
Paraphilia
Visual illusions
Visual hallucinations
Delusions
Massive artwork change
Massive poetic change
Violence
GBH and ABH
Murder
Disfigutement
Obsessive risk taking
Shopping
Gambling
Singing
Eating
Suicide attempts
Punding
Reckless generosity
This list was compiled by a top Professor of Neurology.
Ray.
.
Jem: Many thanks, appreciated.
May you never: How's this list of DA OCDs for starters -
Hypersexuality
Crossdressing
Reorientation
Bondage
Masochism
Sadism
Zoophilia
Exhibitionism
Prostitution use
Internet pornography
Internet child pornography
Paedophilia
Paraphilia
Visual illusions
Visual hallucinations
Delusions
Massive artwork change
Massive poetic change
Violence
GBH and ABH
Murder
Disfigutement
Obsessive risk taking
Shopping
Gambling
Singing
Eating
Suicide attempts
Punding
Reckless generosity
This list was compiled by a top Professor of Neurology.
Ray.
.
.
From the professor's observations (and my own experiences and informal research) the most common serious problem areas seem to be:
Hypersexuality
Gambling
Excessive shopping/spending
Reckless generosity
Pornography
Crossdressing
Delusions of grandeur
Paranoia
Violence
Excessive risk-taking
Eating
Suicidal thoughts
Punding
Any patient can be affected by any number of compulsions: it normally starts with one, and others appear over time.
Deviousness, lying, secretiveness and hidden financial transactions usually accompany many of the compulsions.
.
From the professor's observations (and my own experiences and informal research) the most common serious problem areas seem to be:
Hypersexuality
Gambling
Excessive shopping/spending
Reckless generosity
Pornography
Crossdressing
Delusions of grandeur
Paranoia
Violence
Excessive risk-taking
Eating
Suicidal thoughts
Punding
Any patient can be affected by any number of compulsions: it normally starts with one, and others appear over time.
Deviousness, lying, secretiveness and hidden financial transactions usually accompany many of the compulsions.
.
Hello May You Never (MUN)
As you have only just been prescibed the DA's from your neuro, I would suggest that you have a long discussion wqith him before you take them. Furthermore, if possible, do have somebody with you when you see the neuro. DA's do have remarkabley good effects on some people and can eleviate their symptoms, for those of us who have been or are still effected by OCD when taking them, they can cause devastating effect on lives.
One thing you might want to do if you decide to give them a try, is to insist on a 3 monthly appiontment with the neuro and always have somebody who knows you well enough to know if there are any changes in your behaviour, with you.
Good luck and do keep us informed, it's always nice to hear that people are doing well on their individual medicines.
regards
Glenchass
As you have only just been prescibed the DA's from your neuro, I would suggest that you have a long discussion wqith him before you take them. Furthermore, if possible, do have somebody with you when you see the neuro. DA's do have remarkabley good effects on some people and can eleviate their symptoms, for those of us who have been or are still effected by OCD when taking them, they can cause devastating effect on lives.
One thing you might want to do if you decide to give them a try, is to insist on a 3 monthly appiontment with the neuro and always have somebody who knows you well enough to know if there are any changes in your behaviour, with you.
Good luck and do keep us informed, it's always nice to hear that people are doing well on their individual medicines.
regards
Glenchass
Deviousness, lying, secretiveness and hidden financial transactions usually accompany many of the compulsions
yeah did that before going on da`s
whats punding?
yeah did that before going on da`s
whats punding?
i know now,i know now,i know now,i know now and so on
Punding is the pointless constant repetition of unnecessary tasks.
Examples include putting pebbles into little piles by size, then mixing them up and doing it all over again. Or dismantling thngs and rebuilding them again and again. Emptying a sock drawer into a heap then putting them all back in colour order, then emptying and starting again.
See:
http://forum.parkinson.org/index.php?/topic/9954-post-of-the-week-management-of-punding-and-icds-in-parkinsons-disease/
Ray.
.
Examples include putting pebbles into little piles by size, then mixing them up and doing it all over again. Or dismantling thngs and rebuilding them again and again. Emptying a sock drawer into a heap then putting them all back in colour order, then emptying and starting again.
See:
http://forum.parkinson.org/index.php?/topic/9954-post-of-the-week-management-of-punding-and-icds-in-parkinsons-disease/
Ray.
.
I hope everyone had a good Xmas!
We have now been referred to a neuropshchologist to try and cope with the damage caused by the DAs. Has anyone any experience of this?
We are wondering what it might entail and if it offers any real help.
My husband took his last dose 2 days ago and the nurse tells us there will be a 12 week "washout" period before he returns fully to his old self but at least we are on the way.
This is all thanks to those great people on the forum,Ray in particular, who have supported us through the last 3 months.
Yet again, I give you all my love and thanks,
x
We have now been referred to a neuropshchologist to try and cope with the damage caused by the DAs. Has anyone any experience of this?
We are wondering what it might entail and if it offers any real help.
My husband took his last dose 2 days ago and the nurse tells us there will be a 12 week "washout" period before he returns fully to his old self but at least we are on the way.
This is all thanks to those great people on the forum,Ray in particular, who have supported us through the last 3 months.
Yet again, I give you all my love and thanks,
x
.
That's great news GG; New Year, new start.
I myself spent a few days in a voluntary psychiatric observation ward, but I didn't think it was achieving anything so I discharged myself.
Don't forget - any problem at all, we're always here.
Love, Ray.
.
That's great news GG; New Year, new start.
I myself spent a few days in a voluntary psychiatric observation ward, but I didn't think it was achieving anything so I discharged myself.
Don't forget - any problem at all, we're always here.
Love, Ray.
.
I was seen by yet another medical professional today who hadn't ever heard about PD patients being prescribed drugs which sometimes cause OCDs.
We still have a long way to go.....
We still have a long way to go.....