To all of my friends.
Back on the day when I was "nicked" for crimes carried out whilst on DAs (four-and-a-half years ago now), I was awoken early one morning by a very loud "crack, crack, crack!" on the front door. I opened it, and was pushed aside by two large vanloads of incoming large coppers (about 20 of them) and an arresting officer, who read me my rights. This mob duly ripped the house apart and found nothing. They took various pieces of computer equipment away, which they kept for 2 years until after the trial, even though they revealed nothing.
As I had only recently come off the DAs and switched to L-Dopa, my mobility was much, much worse than it had been for 7 years, and I was having trouble getting about; I was certainly deathly slow. To be invaded like this, and mocked by the gleeful officer as he told me to expect 4 years inside, was terrifying, as was being taken down to the station for 8 hours of interrogation.
The reason for dragging this all up now is that a few days ago I had what I can only describe as a flashback to that day. It was like a living nightmare: VERY real and scary and lasting around 20 minutes, leaving me petrified. I'm still quite shaky now.
{Just to compound things a day or two later thieves broke into our back garden overnight and stole my stepson's motorbike. (I think that's 6 or 7 break-ins we've had in 3 years here.) This resulted in a genuine police "rat-a-tat-tat" the following day. I've also recently changed my dosages of Azilect and Citalopram, which may have affected me.}
My main concern, though, is the flashback. I've never heard of this before in any DA/OCD cases, has anyone else? I haven't taken so much as half a pill of DA for four years, so I've no idea what triggered it. I hope it doesn't return.
I've decided to take a rest for a while to get over these 2 events. I'll still be around for emailers, but may be a bit slow in responding. Don't worry, I'm OK, I just need a breather.
Take care.
Ray.
Have a good rest Ray
Rest well Ray and bounce back stronger. You will be missed.
Radz x
Radz x
Take care Ray and God Bless.
Val
Val
Ray take care and have time out for a rest. But don't be gone to long
PB x
PB x
miss you ray and take care
Ever get that feeling of déjà vu?
Sorry, Lily, this was addressed to my FRIENDS.
Blimey Ray
That was a short break!
That was a short break!
im so sorry ray i did not see the threa,me head bin in the clouds latley ,but i wish u well,and when or if u have now returned ,keep me smilin thas all i require x
Hi Ray,
Why is it that i feel compelled to comment.We have a strange up and down kind of thing on this forum you and I.I don,t know what it is but i visualise you as a person in need of something.How you behave tends to either endear or repulse,depending on the feelings of those who you are in conversation with.I myself have not been getting involved in deep discussions on the forum of late,sometimes they go on Ad Infinitum.
I believe that everyone acts and does things for reasons which at times do not betray the real person inside,maybe that person that was once a boy,loses their way and the never ending snowball of life engulfs them.There is good inside everyone and i try to focus on that,the true person,the person who perplexed is left underneath, confused,struggling for acceptance.There is good inside all of us.Ray,there are issues going on which have turned many against you.This is a hard thing to accept,and the usual reaction is to retaliate with confrontation,which only escalates the bitterness.
Taking a step back is good,leave all bitterness behind and lets get this forum back on track.Everybody should be respected,forgiven and supported on this forum.You take a lot of medication Ray,there is no telling how it alters us ,both mind and body.The flashback is a warning and is possibly the basis for your continuous time consuming fight on the OCD issue and DA,s.Parkinsons affects us all differently and we should all stand together hand in hand in a circle of strength,unity and hope.I have hope Ray that you can get over the problems which mount upon you,coming back with the support i know you can offer,leaving behind the controversy.
This is not a character assassination Ray,i fight my own demons from an entirely different perspective.Hoping that it may help in some way.
All the best
Titan
Why is it that i feel compelled to comment.We have a strange up and down kind of thing on this forum you and I.I don,t know what it is but i visualise you as a person in need of something.How you behave tends to either endear or repulse,depending on the feelings of those who you are in conversation with.I myself have not been getting involved in deep discussions on the forum of late,sometimes they go on Ad Infinitum.
I believe that everyone acts and does things for reasons which at times do not betray the real person inside,maybe that person that was once a boy,loses their way and the never ending snowball of life engulfs them.There is good inside everyone and i try to focus on that,the true person,the person who perplexed is left underneath, confused,struggling for acceptance.There is good inside all of us.Ray,there are issues going on which have turned many against you.This is a hard thing to accept,and the usual reaction is to retaliate with confrontation,which only escalates the bitterness.
Taking a step back is good,leave all bitterness behind and lets get this forum back on track.Everybody should be respected,forgiven and supported on this forum.You take a lot of medication Ray,there is no telling how it alters us ,both mind and body.The flashback is a warning and is possibly the basis for your continuous time consuming fight on the OCD issue and DA,s.Parkinsons affects us all differently and we should all stand together hand in hand in a circle of strength,unity and hope.I have hope Ray that you can get over the problems which mount upon you,coming back with the support i know you can offer,leaving behind the controversy.
This is not a character assassination Ray,i fight my own demons from an entirely different perspective.Hoping that it may help in some way.
All the best
Titan
hi ray
just an update on azilect, i have found that the madopar does not last as long without it. so it does have a use!
it seems to be quite a considerable effect.
good luck
just an update on azilect, i have found that the madopar does not last as long without it. so it does have a use!
it seems to be quite a considerable effect.
good luck
sounds absolutely terrifying. you will be scared of another one.... take time and be kind to yourself.
mrs.t.
mrs.t.
hi Ray, the truth is i don't think you ever fully recover from the DA/OCD experience. From my own prospective and from the contact i had with many other pwp affected over the last several years, just about everyone still gets flashbacks or nightmares. I think your right to take some time out and maybe even consider reducing the amount of time you spend on this forum day to day. Whilst i know you said the forum is a life line for you, it can however in many ways act as a reminder, thus setting off those flashback/nightmares? I try and limit my forum viewing or posting to one or two days a week, so that i keep my mind focused on other things in my life.
titan, bravo i applaud your posting, i thought your comments were very balanced and thoughtful. Pity Lily the same cannot be said of your contribution to this thread!
all the best Ray, hope you feel better soon.
bluey
titan, bravo i applaud your posting, i thought your comments were very balanced and thoughtful. Pity Lily the same cannot be said of your contribution to this thread!
all the best Ray, hope you feel better soon.
bluey
I have thought long and hard about everything I have read about DA/OCD's. I am not using this mind altering drug my brother was on it, hard to believe that a gentle soul could be changed so much....His life and the life of his wife and children are in tatters, his wife suffered a total nervous breakdown 5 weeks ago and is still under treatment in hospital, his children are so confused by it all and luckily were not taken into care but are with family friends. He was never told the affects the drug would have on him nor was his wife. He is not the brother I know nor the father the children know, they are terrified to see him. He has done some terrible things like try to take his own life, and gambling, heightened sexual activities whilst on DA's and now is being taken to court next month.
I know some have written about the effects and to some the drug works.
I feel it should be banned so no poor beggar would go through the awful side that he is going through.....It has torn families apart on both sides I am just glad our Mother is not here to see the dreadful changes in her beloved son.
Thanks for reading, I don't know what to do for him anymore.
Radz
I know some have written about the effects and to some the drug works.
I feel it should be banned so no poor beggar would go through the awful side that he is going through.....It has torn families apart on both sides I am just glad our Mother is not here to see the dreadful changes in her beloved son.
Thanks for reading, I don't know what to do for him anymore.
Radz
Radz,
I have been on the dark side of these drugs and committed some acts of total and complete idiocy.
Gambled away all my money, even took mortgage money from my disabled mother-in-law. Got found out when the bank sent someone to discuss the problem. I was totally unrepentant.
Almost drove my wife into a mental hospital. She was supporting me and helping me, all I did was be mentally abusive.
I won't drone on I've said it all elsewhere.
My point is he needs his meds changed. He needs someone to be on his side. To
help him make sense of what, in the name of hell, he has done.
The drugs have a role to play in therapy. But the person needs monitored. With all the knowledge about there side effects , surely this still cant be happening. I was allowed to ramp up the drugs to the max. unchallenged. Week by week I was increasing my dose to the next level. He needs proper legal advice, if he is still taking these drugs, his legal representative will need to know about the side effects.
Cocaine is a dopamine agonist. It works on the instant gratification part of the brain and doesn't let go. You are compulsive/impulsive to the point where your brain doesn't offer any barrier. Like a person with turrets.
Unlike other junkies who are shunned by society, your brother did not choose to dope himself up, these drugs were prescribed. They did what they were supposed to do, his only mistake was to trust his consultant and not look into the side effects of his drugs.
Your mother, God rest her soul, I'm sure knows what he is going through and knows he needs help. Coming off his current meds is paramount. He will return to his old self quite quickly. Getting himself back on track will take loads of support.
I'm still seeking legal advice and abuse from debt collectors 6 years on, finding someone who understands and knows help is a nightmare.
Good luck to you all. If you want to pm me any questions I'd be happy to help.
Eck
I have been on the dark side of these drugs and committed some acts of total and complete idiocy.
Gambled away all my money, even took mortgage money from my disabled mother-in-law. Got found out when the bank sent someone to discuss the problem. I was totally unrepentant.
Almost drove my wife into a mental hospital. She was supporting me and helping me, all I did was be mentally abusive.
I won't drone on I've said it all elsewhere.
My point is he needs his meds changed. He needs someone to be on his side. To
help him make sense of what, in the name of hell, he has done.
The drugs have a role to play in therapy. But the person needs monitored. With all the knowledge about there side effects , surely this still cant be happening. I was allowed to ramp up the drugs to the max. unchallenged. Week by week I was increasing my dose to the next level. He needs proper legal advice, if he is still taking these drugs, his legal representative will need to know about the side effects.
Cocaine is a dopamine agonist. It works on the instant gratification part of the brain and doesn't let go. You are compulsive/impulsive to the point where your brain doesn't offer any barrier. Like a person with turrets.
Unlike other junkies who are shunned by society, your brother did not choose to dope himself up, these drugs were prescribed. They did what they were supposed to do, his only mistake was to trust his consultant and not look into the side effects of his drugs.
Your mother, God rest her soul, I'm sure knows what he is going through and knows he needs help. Coming off his current meds is paramount. He will return to his old self quite quickly. Getting himself back on track will take loads of support.
I'm still seeking legal advice and abuse from debt collectors 6 years on, finding someone who understands and knows help is a nightmare.
Good luck to you all. If you want to pm me any questions I'd be happy to help.
Eck
ECK.......many many thanks for what you have written, I think I have posted in the wrong thread with this but feel where ever I write it, it needs to be said, It is such a nasty drug IMHO from what I have read and how I have seen it change my brother. As I have said didn't know where to turn for help, afew nice kind members here have PM'ed me stating what you also have said. I am glad to hear you are back to your old self pre DA days and I wish you all the very best for taking the step to help me .......many would not have. Seems to me this drug is a double edged sword some it does not touch with the horrible side effects but the shall we say choosen few who do get caught up in the mind changing horrible cruel side effects are just left, not even knowing that this could happen to them and their loved ones to suffer so badly.
Radz
Radz
oh my heart goes out to you poor people who are suffering the bad effects of da's,
my o/h is of ropinerol a few weeks and sooooo much better,
he is on azilect one daily and entacapone three daily, still has thoughts of a man in our room at night but not as strong, life is much better, but still not 100% maybe never will get my o/h back to what he was, but can cope most of the time. i suppose life will never be the same, but hanging in there, good luck to you all, and if suffering from bad side effects get off the da's asap.
xx
my o/h is of ropinerol a few weeks and sooooo much better,
he is on azilect one daily and entacapone three daily, still has thoughts of a man in our room at night but not as strong, life is much better, but still not 100% maybe never will get my o/h back to what he was, but can cope most of the time. i suppose life will never be the same, but hanging in there, good luck to you all, and if suffering from bad side effects get off the da's asap.
xx
Hello, I've been dx for almost 11 years and for the first 4 I was treated with Ropinerole. Way back then pwp were not informed about the possible side effects in respect of OCD. I shopped till I dropped, literally by the time it was mentioned to my consultant I was in debt for £60000 and almost loosing my home. When taken off the offending drugs my behavior reverted back to normal and I haven't used DA's since. I have been suffering from really bad dyskinesias for some time and have now been told that the only way left to address the problems is to try an apomorphine pen, which is a da. My pd nurse has told me that I the drug only remains in the system for an hour, therefore I may be able to tolerate it better than the da's that remain in the system. Hopefully our past experiences of da's will give us insight into any behavior changes very quickly.
I'm just waiting for the approval of a panel because the drug is expensive, so won't start it for another week or so....if the Panel agree it!!! I will keep you all informed of my progress... I'm sooooo worried about taking it.
Glenchass
I'm just waiting for the approval of a panel because the drug is expensive, so won't start it for another week or so....if the Panel agree it!!! I will keep you all informed of my progress... I'm sooooo worried about taking it.
Glenchass
hi glengrass,
As you may recall i too suffered at the hands of a DA called cabergoline, to the tune of £350,000 bankruptcy order caused by gambling. Iike you i have been on non DA treatment since coming off cabergoline a few years ago. However due to worsening Dyskinesia and on/off periods, i was put on the APO- pump thanks to my neuro. All i can say is, its wonderful. Now i can get through the whole day without on/off periods and with pretty good mobility. As for OCD side effects, well so far so good! I think the key for me is what you said about the drug only being in your system for a very short period eg, around 1 hour! Also i only use the APO-pump during the day not 24/7. I still take sinemet in the evening and at night time.
regards
bluey
As you may recall i too suffered at the hands of a DA called cabergoline, to the tune of £350,000 bankruptcy order caused by gambling. Iike you i have been on non DA treatment since coming off cabergoline a few years ago. However due to worsening Dyskinesia and on/off periods, i was put on the APO- pump thanks to my neuro. All i can say is, its wonderful. Now i can get through the whole day without on/off periods and with pretty good mobility. As for OCD side effects, well so far so good! I think the key for me is what you said about the drug only being in your system for a very short period eg, around 1 hour! Also i only use the APO-pump during the day not 24/7. I still take sinemet in the evening and at night time.
regards
bluey