Hi
I haven't posted in a while but have followed this thread (and others related to it) and can see both sides of the argument I am seeing my neurologist on 27th June and will ask to be prescribed PD medication as I've 'resisted' it since being diagnosed nearly 4 years ago but my symptoms are getting worse. At a previous meeting with the neuro I did ask her what medication she would put me on when required and she said 'da's.
Now - is there alternative medication for me at this stage or does it have to be da's? Any suggestions are most welcome
Renee
IMHO
theres only really DAs and Levadopa (LD) to help with your symptoms
your neuro doesnt want you on LD too soon as it can lead to dyskinesia
a mild degree of compulsive behaviour is thought worth putting off dyskinesia for 3 years or so
so it will be very difficult to get your neuro to go straight to LD.
theres only really DAs and Levadopa (LD) to help with your symptoms
your neuro doesnt want you on LD too soon as it can lead to dyskinesia
a mild degree of compulsive behaviour is thought worth putting off dyskinesia for 3 years or so
so it will be very difficult to get your neuro to go straight to LD.
Hi Turnip
thank you for your advice. I'm sure my neuro will talk me through everything and I feel confident enough to raise my concerns as this thread has helped immensely. I must confess I really fear getting dyskenesia so anything that delays it is fine with me.
Renee
thank you for your advice. I'm sure my neuro will talk me through everything and I feel confident enough to raise my concerns as this thread has helped immensely. I must confess I really fear getting dyskenesia so anything that delays it is fine with me.
Renee
Hi
This is my first contact on this site
I have had PD for over 10 years and have taken my time reading about disorders on this site
If you are not medicaly qualified you should only be refering to your own condition.
I feel that newly diagnosed sufferers could very easily become confused
Listing numerous side effects you do not have is wrong.
If you dont suffer from it dont talk about it.
This is now my last contact with this site But I will still read it.
This is my first contact on this site
I have had PD for over 10 years and have taken my time reading about disorders on this site
If you are not medicaly qualified you should only be refering to your own condition.
I feel that newly diagnosed sufferers could very easily become confused
Listing numerous side effects you do not have is wrong.
If you dont suffer from it dont talk about it.
This is now my last contact with this site But I will still read it.
i agree we shouldnt give medical advice which is why i gave my opinion on what neuros are likely to do not on what medication to take.
This post has been edited/removed by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx
This post has been edited/removed by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx
“I note that your supporters have left you to your own devices on this one.”
That’s like saying: “I notice that those who don’t fancy being mauled by lions have escaped the arena.”
That’s like saying: “I notice that those who don’t fancy being mauled by lions have escaped the arena.”
Along with Lily,
Ditto.
Ditto.
[::sad 
This has all turned really silly. It's madness.
This has all turned really silly. It's madness.
A pussy cat gingerley testing the water
It has often been said that if one finds a forum topic uncomfortable there is a simple solution - don't read it. I came back to this topic today because the subject affects me personally & I value the advice based on experience of members of this forum.
As a fence sitter, a genuine seeker of information and, I will admit, somebody who has not read back very far, would it be possible for those who have personal differences to conduct their discussion by other means of communication?
My inclination is to apologise in advance to anybody I may have offended by posting this timid opinion. But I won't.
It has often been said that if one finds a forum topic uncomfortable there is a simple solution - don't read it. I came back to this topic today because the subject affects me personally & I value the advice based on experience of members of this forum.
As a fence sitter, a genuine seeker of information and, I will admit, somebody who has not read back very far, would it be possible for those who have personal differences to conduct their discussion by other means of communication?
My inclination is to apologise in advance to anybody I may have offended by posting this timid opinion. But I won't.
Ray,
I believe that you like to control things,to have things your own way.
[content removed
Could this episode all be down to my view on the Multiple System Atrophy topic above,it makes me wonder.You are correct,i believe your poem comes across in the wrong light.That is my opinion.I have written a poem expressing my views,however it will be kept to myself and trusted friends.
This post has been edited/removed by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx
All the best
Titan.
I believe that you like to control things,to have things your own way.
[content removed
Could this episode all be down to my view on the Multiple System Atrophy topic above,it makes me wonder.You are correct,i believe your poem comes across in the wrong light.That is my opinion.I have written a poem expressing my views,however it will be kept to myself and trusted friends.
This post has been edited/removed by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx
All the best
Titan.
Hi
I have decided to withdraw my last contact
The reason for joining this forum was to find people with similar symptoms as myself. I have numerous side effects not dissimilar to ray of sunshine although my most serious was Punding. I also had a run in with the law.. But that's another story.... I was looking for advice from people who may have found ways of dealing with their side effects, as i have for some of mine.
I agree with annebernadette.
I found that the site had deteriorated into a sniping forum It had deteriorated into a personal slanging match.
I would love to discus my condition with others and vise versa But not with you ray of sunshine if i wish to have my say I will have my say as is my right.
I found you offensive. Not everyone agrees with you. I must say I agree With titan's comments. I do not find you a ray of sunshine.. By the way I did like your poem.
If I have offended anyone i am sorry.
It would appear i will have to look elsewhere for assistance.
k9jlk
I have decided to withdraw my last contact
The reason for joining this forum was to find people with similar symptoms as myself. I have numerous side effects not dissimilar to ray of sunshine although my most serious was Punding. I also had a run in with the law.. But that's another story.... I was looking for advice from people who may have found ways of dealing with their side effects, as i have for some of mine.
I agree with annebernadette.
I found that the site had deteriorated into a sniping forum It had deteriorated into a personal slanging match.
I would love to discus my condition with others and vise versa But not with you ray of sunshine if i wish to have my say I will have my say as is my right.
I found you offensive. Not everyone agrees with you. I must say I agree With titan's comments. I do not find you a ray of sunshine.. By the way I did like your poem.
If I have offended anyone i am sorry.
It would appear i will have to look elsewhere for assistance.
k9jlk
[content edited because it does not comply with guidelines]
Side effects include a lack of empathy and being obsessed.
Dont worry dear friend, I've got your back. Remember, everything in moderation. When you get the notion to be hurtful or judgemental or superior, don't.
We are here to help.
This post has been edited/removed by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx
Side effects include a lack of empathy and being obsessed.
Dont worry dear friend, I've got your back. Remember, everything in moderation. When you get the notion to be hurtful or judgemental or superior, don't.
We are here to help.
This post has been edited/removed by moderators because it does not comply with our forum guidelines. You can find the guidelines here: http://www.parkinsons.org.uk/forum-terms-and-conditions/forum-help/forum-user-guidelines.aspx
Hi K9jik,
I'm curious and would appreciate you sharing the way you deal with your side effects.
Cutiepie
I'm curious and would appreciate you sharing the way you deal with your side effects.
Cutiepie
Hi Cutiepie
Some of my side effects
Sleep Disorder Still ongoing
Frustration Change of medication
Depression Change of medication
Anxiety Change of medication
This in turn caused
Anger Change of medication
Quick Temper Change of medication
Aggression Change of medication
Tremors Still ongoing slight increase
Movement Freezes Physio therapy & game playing
Wii & X Box
Co-ordination Physio Therapy
Stiffness " "
Concentration " "
Memory Short term slight loss
Writing Name only Speach Speach Therapy
Swallowing Sugar free diluting Juice
Cranberry Juice (both good for Pills)
Night Cramps Bananas
Posture Physio Therapy, Wii
Bladder Cranberry Juice
constipation Porage Oats, Bran, Beans, Pulses
Back Pain Floor excersises, Ten machine
This is just some of my problems.
I can recommend the Wii This was great For my balance, movement and co-ordination
I was diagnosed with PD over 10 years ago but i have had it for about 15 - 16 years.
I was misdiagnosed as my symptoms at the time were very slight.
It was only this year I was refered to Physio, speach and Occupational Therapy
K9JLK
which has been a great asset
Some of my side effects
Sleep Disorder Still ongoing
Frustration Change of medication
Depression Change of medication
Anxiety Change of medication
This in turn caused
Anger Change of medication
Quick Temper Change of medication
Aggression Change of medication
Tremors Still ongoing slight increase
Movement Freezes Physio therapy & game playing
Wii & X Box
Co-ordination Physio Therapy
Stiffness " "
Concentration " "
Memory Short term slight loss
Writing Name only Speach Speach Therapy
Swallowing Sugar free diluting Juice
Cranberry Juice (both good for Pills)
Night Cramps Bananas
Posture Physio Therapy, Wii
Bladder Cranberry Juice
constipation Porage Oats, Bran, Beans, Pulses
Back Pain Floor excersises, Ten machine
This is just some of my problems.
I can recommend the Wii This was great For my balance, movement and co-ordination
I was diagnosed with PD over 10 years ago but i have had it for about 15 - 16 years.
I was misdiagnosed as my symptoms at the time were very slight.
It was only this year I was refered to Physio, speach and Occupational Therapy
K9JLK
which has been a great asset
Titan:
Before we get sidetracked, you'll see that I have changed my mind re MSA and we are now of the same opinion.
K9 et al:
I am not here to be liked, but to:
1. Keep an eye out for people who may be in the dark pit of DA/OCDs and need rescuing. Some of these may not WANT to be rescued - they THINK they're having a great time - but still need to be. Some may not even know they ARE in a pit at all. Some may know they're in some kind of pit but don't know what's causing it, or how to get out.
2. Look out for DA patients who are just starting to show signs of compulsions, often apparently minor, but who have not yet succumbed to an irretrievable level. Such folk need serious assistance, quickly.
3. Try to identify people who have been prescribed DAs without being warned of the possible OCD side effects. Or of their potential to completely destroy every aspect of a patient's whole life. Or that current stats show that at least 1 in 4 patients who are prescribed DAs will experience OCDs to some degree.
4. Identify people who are on DAs and having no problems at all (the lucky majority!), but who nonetheless haven't been warned of the possibility that as their DA dosages are increased over time, there is still the possibility that OCDs could kick in later.
5. Look out for those who are on DAs but who do not have a regular carer or close relative who can keep a careful eye out for any unusual or out-of-character changes in behaviour.
6. Provide further information, if required, to those who HAVE been warned, but would like to know more, including providing case studies, documented evidence and internet links (obviously without anyone's personal details) for those who wish to challenge the decisions of their doctors, etc.
7. Raise awareness of the whole issue to 100% amongst GPs, PD Nurses, Neurology Consultants, the Media, the Public and - of course - the whole of PUK.
8. Ensure any information I pass on is up-to-date, and agreed as accurate by leading neurological, research, academic and other sources.
In the past I (and other people here) have - without doubt - saved a significant number of PwP from disaster. Many marriages and careers have been saved and people's life savings retained. Sufferers have been stopped in their tracks when they may have already lost thousands of pounds, but we saved them from losing their houses (like I did), families and/or other assets. We have also stopped divorces in their tracks.
We are at the sharp end here, not a debating society. I have no problem if people don't like me or my methods. Many don't like the publicity - much of it tabloid rubbish - that I've attracted. I can't say I'm keen on it myself - I've been the target of much hate mail, etc - but anything which makes even a tiny fraction of the population more aware of the DA/OCD issue is worth doing as far as I'm concerned.
Take care,
Ray.
Before we get sidetracked, you'll see that I have changed my mind re MSA and we are now of the same opinion.
K9 et al:
I am not here to be liked, but to:
1. Keep an eye out for people who may be in the dark pit of DA/OCDs and need rescuing. Some of these may not WANT to be rescued - they THINK they're having a great time - but still need to be. Some may not even know they ARE in a pit at all. Some may know they're in some kind of pit but don't know what's causing it, or how to get out.
2. Look out for DA patients who are just starting to show signs of compulsions, often apparently minor, but who have not yet succumbed to an irretrievable level. Such folk need serious assistance, quickly.
3. Try to identify people who have been prescribed DAs without being warned of the possible OCD side effects. Or of their potential to completely destroy every aspect of a patient's whole life. Or that current stats show that at least 1 in 4 patients who are prescribed DAs will experience OCDs to some degree.
4. Identify people who are on DAs and having no problems at all (the lucky majority!), but who nonetheless haven't been warned of the possibility that as their DA dosages are increased over time, there is still the possibility that OCDs could kick in later.
5. Look out for those who are on DAs but who do not have a regular carer or close relative who can keep a careful eye out for any unusual or out-of-character changes in behaviour.
6. Provide further information, if required, to those who HAVE been warned, but would like to know more, including providing case studies, documented evidence and internet links (obviously without anyone's personal details) for those who wish to challenge the decisions of their doctors, etc.
7. Raise awareness of the whole issue to 100% amongst GPs, PD Nurses, Neurology Consultants, the Media, the Public and - of course - the whole of PUK.
8. Ensure any information I pass on is up-to-date, and agreed as accurate by leading neurological, research, academic and other sources.
In the past I (and other people here) have - without doubt - saved a significant number of PwP from disaster. Many marriages and careers have been saved and people's life savings retained. Sufferers have been stopped in their tracks when they may have already lost thousands of pounds, but we saved them from losing their houses (like I did), families and/or other assets. We have also stopped divorces in their tracks.
We are at the sharp end here, not a debating society. I have no problem if people don't like me or my methods. Many don't like the publicity - much of it tabloid rubbish - that I've attracted. I can't say I'm keen on it myself - I've been the target of much hate mail, etc - but anything which makes even a tiny fraction of the population more aware of the DA/OCD issue is worth doing as far as I'm concerned.
Take care,
Ray.
Hi all interested in DA's and their side effects.
Thanks for your input and I will be studying my husbands 'every breathing moment' for the CD etc. He did suffer whilst on Pramapexol but it took 9 months of slow increase before we realised ~ now he is currently increasing Bromocryptine ~ only time will tell.
Thanks for your input and I will be studying my husbands 'every breathing moment' for the CD etc. He did suffer whilst on Pramapexol but it took 9 months of slow increase before we realised ~ now he is currently increasing Bromocryptine ~ only time will tell.
Ray's statement of why he is involved in the forum and in this site is factual and helpful.
Could Titan and Kyloe post their "manifesto" and let us know precisely what they feel is their purpose in posting?
I feel this would clarify where the problem lies and help us all find a solution to the in-fighting.
My love and support to all those battling with the OCDs and those helping them.x
Could Titan and Kyloe post their "manifesto" and let us know precisely what they feel is their purpose in posting?
I feel this would clarify where the problem lies and help us all find a solution to the in-fighting.
My love and support to all those battling with the OCDs and those helping them.x
Why did I log in tonight after a long absence? Same old....... posts deleted by Admin.Makes a change from the bullying and cross examination that I was on the receiving end of previously, by a certain member.
I wish we had known the effects of DA's 13 years ago. Then we could have made an informed decision, just as are the options to those newly diagnosed when readung some threads on this forum. If they decide to go down that route then at least they are forwarned of what to look out for.
I wish we had known the effects of DA's 13 years ago. Then we could have made an informed decision, just as are the options to those newly diagnosed when readung some threads on this forum. If they decide to go down that route then at least they are forwarned of what to look out for.