A compulsion can easily be broken simply by gaing impulse control.Impulses are carried out by the muscles.one has to strngthen his nervous constitution to curb impulses.Doing the things we ear and hate will give us the muscle control to do away with unwanted impulses.But the brain knows all to wel what gives pleasure and that is truely what we are up against.
I don't feel you understand the nature of ICDs caused by DAs.
The only real way to overcome them is to stop taking the drug that creates them.
The medical,profession then needs to offer help and support to cope with the inevitable withdrawal horrors.
Prevention is better than a cure and that needs education and monitoring.
GG
Doctors today continue using lobotomy and now DBS for a condition that has no merit,ocd.Nice catch in words but to look at it in a objective mine one has to laugh with such nonsenses..
Everybody know there is a social penality people often avoid certain behaviors.One could be a boar at home and a angel on the street.True people who are plagued by compulsions and obsessions seem helpless.Thoses afflicted need only a small about of information and alot of practice to overcome it.
I take requip and have had no increase in comulsive behavior simply because I know most compulsive behavior is sovereign and hurts my emotional peace.I seek peace in my life where ever I might find it and when approached with temper or antisociial tends i bend all my enegy to avoid them.
ALL people and PD patients can nourish a healthy mind .If a drug might alter that goal I would eliminate it from my use.Awhile ago i became ill with a parainfluenza .the doc ordered a oral ateroid along with a antibioltic which made me sic physical and nervously most of the summer.So now I know never to take steroids or antibiotics only when a illness culture deems them necessary.I have myoclonus probaly due to a spinal steroid shot.At times it can be much worse than PD.The myoclonus has many drugs that can make it much worse gabepentin,some BP drugs ,etc.Im just back home from a stint with myoclonus which put me in a walker for now.
I would cross check all your drugs to see if there are conflicts.Colaids seem to interfere with sinemet so its best to take sinemet alone.
Agonists can cause problems but so do many more drugs we take.
Living with PD sure is fight ,for me healthcare has not been up to my expectations
"Thoses afflicted need only a small about of information and alot of practice to overcome it."
ICDs caused by DAs are not a lifestyle choice.
No amount of practice will overcome them.
You admit you do not suffer this side effect from taking Requip but feel it is acceptable to tell those who do that they can cure themselves , and that you choose not to allow them to develop.
You are entitled to your opinion but I and the published research don't share it.
GG
Hi goldengirl,
Just to say that I did put something about us looking into what we can do about what's included in patient information leaflets at the end of my previous response - sorry if that wasn't clear in the first instance.
Kind regards,
Suma
Thank you for responding, Suma.
it is the wooliness of the strategy that bothers me.
You say you will explore the situation and information will be a key part of the strategy.
The timescale is unclear.
The research findings have been out there for at least 5 years and the leaflet warnings are still grossly inaccurate.
Even the Weintrub figures are "at least 14%" and the harshest warning in a leaflet is " up to 1 in 100".
I am hoping that PDUK makes a clear statement that it will begin putting pressure on the drug companies and any body that oversees them to print clear and accurate warnings immediately.
5 years is long enough.
GG
Hi goldengirl,
If the information within my response seemed vague, it's because with the onset of the new strategy, we are currently experiencing some changes which means that getting clear timescales on activities is somewhat more challenging at the moment.
Having said that, I've spoken to a few of my colleagues in the Policy and Service Improvement team and our feeling is that rather than lobbying individual drug companies about their information leaflets, we are more likely to get change if we work at a more strategic level, for example, by approaching the MHRA (the Medicines and Healthcare Regulatory Agency who approve all the information held in these leaflets) and ask what they are doing to ensure the most accurate information about side effects is used. We can also look at our parliamentary activity and use mechanisms such as parliamentary questions to ask what is happening with this within a very public forum (this approach has been quite useful in opening doors with our medicines management work). We obviously wouldn't be able to do anything with the latter approach until a new parliament is formed but we can investigate how to approach MHRA with a very clear focus on what needs to be changed and feedback on any progress.
Kind regards,
Suma
Thank you Suma.
That sounds a clear cut plan to get accurate information out there.
If I had read the real statistics when my husband first started on these drugs, our life would be very different now.
I look forward to reading how things go.
Best wishes,
GG
selfhelpsystems.org
is this site endorsed by puk?
1 in 10 100 1000 dont be fooled by probability studies or by research saying 14%
In my experience its 100
:Be aware. Get informed.
Drug cos will publish guides in relation to legislation and what effect on their profits.
Researching side effects that cause people to become secretive and addicted is bound to be flawed. add embarrassment and fear of being found out or having to stop something they may be enjoying and its impossible.
What we do know is you have a significant chance of getting them and they MAY affect your life significantly so you need to take them seriously.
Neuros need to drive the information to patients and carers and they have to take responsibility to monitor themselves which is not easy.
It is easier with newbies but a lot harder with those on them already.
The current reaction to anyone revealing they have a problem is a rapid removal of the drug.
In my opinion, judging from how it has affected others I know cold turkey is a disaster causing distress to the patient and leaving them depressed with muscular pain and a condition similar to restless leg syndrome except it affects the
No easy answers but I do know I have success by taking a very low maintenance dose of Mirapexin.
Hi GG
Been looking back on past posts, and now I understand why you are so passionate about getting through to everyone about the dangers of DA's. You have been to hell and back and hope the future has a lot more joy to hold for you both. My regards for you in what you are helping to do and hope something comes to fruition.
I myself am still on a DA - Ropinirole 14mg, and have not experienced any of these problems as yet and hope I never will. Thankyou for bringing the information to the forfront, and my best wishes for you to have the strenght to continue your fight. Life can be cruel at times.
Regards Sheila xx
Hi Leyther,
We don't endorse the website you refer to, but we do have information about anxiety on our website.
Best,
Alethea
Thank you Shiela and Leyther for supporting action to give PWP real info about these dangerous drugs.
I am pleased to hear you benefit from them, Shiela, and that you are aware of the possible side effects.
Thank you also for the kind words and good wishes. We have much to be grateful for.
You are right , Leyther, that the problem is exacerbated by the secrecy and thrill in getting away with the destructive secret lives and sometimes illegal activities.
The withdrawal of the drugs is indeed horrific and I would like PDUK to research the handling of this very difficult period. There seemed too be little information and advice to draw on.
Doctors treating my husband seemed at a loss to know how to proceed but trial and error over a month in hospital and a variety of psychiatric involvement eventually got us on to a Sinemet regime and the cessation of the OCDs.
After 2 years of medical and psychiatric care we were back to a kind of bearable life.
A publication of good practice to manage this would enable other PWPs to be spared some of the pain and suffering.
Publicising the accurate statistics will be a start but some will slip through the net and need help in salvaging sanity and relationships and managing their Parkinsons in a different way.
My long-term hope is that new treatments mean that no patient needs to take part in the lottery of finding out if they will be the 1 in 3 whose life is destroyed by DAs.
Love
GG
Thank you, Gus.
And I am lucky to have good friends on the forum!
Love
GG
you deserve some praise for your determination to get people to look out for others who may have misfortunes down to these drugs .take care gg
Xx
gg,
One thing that is so important today is keep a open mind.
When i started having the jerks my nurse(couldn't be seen for two months)called it dyskinsia.So right away i was mad about the sinemet causing me these embarrassing movements.Later I learned it was myoclonus.Then my doctor labeled it psychogenic,Need a psychaitrist,lol
I now know through a EEG it's not psychgenic.
Myoclonus can be caused by sinemet,agonists and about 100 other conditions and drugs.
One spot from Dr.Abraham Low that has been very helpful .To Know is to know what we don't know.
many here have helped me and I'm enternly greatful.They do get the jerks but make no big deal of it.
I now someday Ill figure it out but intil then I'm going fishing.Springs here and we had a long winter
Thanks again my good friends
GG, thanks for your post of 10/4. It was much appreciated. I'm not on the forum much just because of the home situation now.
john947- if only it were so simple, I wish it was just a case of mind over matter.
Hi Benji
I am sorry that your situation is not improving.
I have said in an earlier post that much needs to be done to educate neuros on the best ways to help PWP to withdraw from DAs.
There is so little info out there.
Have you thought about approaching the neuro or Parkinsons Nurse about withdrawing in hospital under supervision?
It is very stressful but worth it in the end, in my opinion.
Counselling afterwards is essential.
What made it so hard for me was that I had to educate the doctors and psychiatrists....I had to explain the DA/OCD situation and give them packs of printed stuff such as Forum posts, The Mayo Clinic research etc and they were all horrified that they did not know about the problem.
They had even less to go on in working out how to get through a withdrawal programme but stumbled along until they got there, coping with each setback as it occurred...incontinence, extreme falls in blood pressure, acute anxiety, ....
Eventually we got there and I hope things have changed over the last 5 years but your plight suggests not.
Keep trying and keep in touch.
I will be thinking of you and hoping you find a way through this.
Love
GG
