Hi,
Thanks for all the advice,i really appreciate your kindness.I have taken all on board and am milling it all round in preparation for my appointment on Friday.
Cutiepie,i will answer your list of questions shortly.
Annebernadette,you have not been lost in the mix.Your posting concerning the computer usage and on line shopping,and your concerns of OCD,even though not financially damaging,was one of the triggers for my posting out of the blue.If you were concerned with an upcoming appointment and worries concerning your meds over the issues you mentioned,then i should be also.Thanks you for that.I want to let you know you are not alone and i apologise for barging in mid topic in the midst of your own concerns.We shall have to compare notes on what our Neurologists say.
All the best
Titan
thank you again titan. You did not barge in It is I who should apologize, for my self absorption. Just because I don't see "AB" does not mean the words of advice do not apply to me and I also am most grateful to those who have felt able to describe their experiences. It makes it much more real to me than does a warning on a patient information leaflet.
I am beginning to feel unlike myself. I am irritable,easily upset, suspicious and fearful. I do not know whether this is down to PD, DA's, recent personal events, or the weather (little joke creeping in)
I will be thinking of you on Friday
I am beginning to feel unlike myself. I am irritable,easily upset, suspicious and fearful. I do not know whether this is down to PD, DA's, recent personal events, or the weather (little joke creeping in)
I will be thinking of you on Friday
Hi Cutiepie,
ANSWERS.
1.Yes,but did have spells before meds on e-bay etc.
2.The main sites i visit are Parkinsons UK,Sporting life,Racing post.To a lesser extent,E-bay,google,you tube.
3.Sleep,i prefer to go to bed late,about the time of this posting.On internet usually till then.Usually get up to take Wife to work at 5.20 a.m,then stay up after dropping her in work for six.If she isen,t in work the i get up at 6.45a.m.I take my youngest lad(16)to school.
4.I probably get about 5 hours average.
5.No,in fact the opposite,eating is a chore for me,i have to make myself.
6.Quite often,especially when being moaned at by my OH.
7.My day is unconstructive.I ferry people around,do the basic housework,i look around and sometimes think whats the point.I find enjoyment in my horse racing in the middle of a life which is becoming less and less of a life and more and more of a stagnant pool of an embarrassment.A man of 47 whos job is as a part time delivery of a local paper.It is a long story how my OH and my roles were reversed.
I try to be there for my family,some days are fuller than others,but i feel they are wasted.
8.No,i can pull myself away from the computer,i am not that bad.
Honest answers for you Cutiepie
All the best
Titan
ANSWERS.
1.Yes,but did have spells before meds on e-bay etc.
2.The main sites i visit are Parkinsons UK,Sporting life,Racing post.To a lesser extent,E-bay,google,you tube.
3.Sleep,i prefer to go to bed late,about the time of this posting.On internet usually till then.Usually get up to take Wife to work at 5.20 a.m,then stay up after dropping her in work for six.If she isen,t in work the i get up at 6.45a.m.I take my youngest lad(16)to school.
4.I probably get about 5 hours average.
5.No,in fact the opposite,eating is a chore for me,i have to make myself.
6.Quite often,especially when being moaned at by my OH.
7.My day is unconstructive.I ferry people around,do the basic housework,i look around and sometimes think whats the point.I find enjoyment in my horse racing in the middle of a life which is becoming less and less of a life and more and more of a stagnant pool of an embarrassment.A man of 47 whos job is as a part time delivery of a local paper.It is a long story how my OH and my roles were reversed.
I try to be there for my family,some days are fuller than others,but i feel they are wasted.
8.No,i can pull myself away from the computer,i am not that bad.
Honest answers for you Cutiepie
All the best
Titan
Hi.
When I came off DAs, and ceased to suffer from OCDs, I didn't really know what to do with myself. Luckily (??) I was soon under arrest and then on bail for nearly two years while the prosecution put their case together. Preparing my side of the story kept me occupied during that period, so once the case was over I was again at a loss.
Bearing in mind that my mobility was now useless, and that I'd surrendered my driving licence (I have a Motability lease car, but only my wife is insured to drive it) I was - and still am - totally disorganised. Obviously choices are limited due to the profound lack of cash, and the early retirement imposed on me by the DA saga coming much sooner than anticipated. This left me feeling prematurely old, especially with a second wife thirteen years younger!
I'm part-way through writing my autobiography, originally planned for the 2011 Christmas market (a great stocking-filler for compulsive shoppers....), but it's really difficult keeping on task - I much prefer browsing around the forum!
Ray.
When I came off DAs, and ceased to suffer from OCDs, I didn't really know what to do with myself. Luckily (??) I was soon under arrest and then on bail for nearly two years while the prosecution put their case together. Preparing my side of the story kept me occupied during that period, so once the case was over I was again at a loss.
Bearing in mind that my mobility was now useless, and that I'd surrendered my driving licence (I have a Motability lease car, but only my wife is insured to drive it) I was - and still am - totally disorganised. Obviously choices are limited due to the profound lack of cash, and the early retirement imposed on me by the DA saga coming much sooner than anticipated. This left me feeling prematurely old, especially with a second wife thirteen years younger!
I'm part-way through writing my autobiography, originally planned for the 2011 Christmas market (a great stocking-filler for compulsive shoppers....), but it's really difficult keeping on task - I much prefer browsing around the forum!
Ray.
Hi,
REALISATION AT THE START OF A NEW DAY
The importance of this forum to all of us.A lifeline to so many,in my view the biggest and most important source of knowledge for awareness of this condition we all share.
The considerate and helpful people who by a few words and just a bit of their time can make all the difference to a persons life without even knowing it.
The butterfly thread for example,the release of inhibitions as people revealed more about themselves,fun.A mental image of person which can be turned on its head by showing sometimes how wrong you can be.The importance of realising behind each name and posting is a person going through what we are all going through.It doesen,t matter what we look like or how we are incapacitated,what is important is the real person inside,that will always remain.
The Dopamine agonists threads,like this one.They continually attract the biggest number of postings and discussions,deletions.This shows how emotive and important this issue is.No smoke without fire.New pwp coming to the forum need to know the ups and downs,the pros and cons,the whole awareness package and the important warnings given by those who have suffered catastrophic problems in the past.People baring their soul on here hopefully helping those starting off on the medication roller coaster.People on the roller coaster giving insight of the current situation,with the help of those with experience,to see just how understanding and awareness has progressed.
Maybe there should be a thread,"My experience with my Neurologist".So all those who go for appointments now can pool together their views on just how things have progressed.Are things moving forward or are people still being let down.My honest summary,i will post here Friday following my appointment.
All the best
Titan.
REALISATION AT THE START OF A NEW DAY
The importance of this forum to all of us.A lifeline to so many,in my view the biggest and most important source of knowledge for awareness of this condition we all share.
The considerate and helpful people who by a few words and just a bit of their time can make all the difference to a persons life without even knowing it.
The butterfly thread for example,the release of inhibitions as people revealed more about themselves,fun.A mental image of person which can be turned on its head by showing sometimes how wrong you can be.The importance of realising behind each name and posting is a person going through what we are all going through.It doesen,t matter what we look like or how we are incapacitated,what is important is the real person inside,that will always remain.
The Dopamine agonists threads,like this one.They continually attract the biggest number of postings and discussions,deletions.This shows how emotive and important this issue is.No smoke without fire.New pwp coming to the forum need to know the ups and downs,the pros and cons,the whole awareness package and the important warnings given by those who have suffered catastrophic problems in the past.People baring their soul on here hopefully helping those starting off on the medication roller coaster.People on the roller coaster giving insight of the current situation,with the help of those with experience,to see just how understanding and awareness has progressed.
Maybe there should be a thread,"My experience with my Neurologist".So all those who go for appointments now can pool together their views on just how things have progressed.Are things moving forward or are people still being let down.My honest summary,i will post here Friday following my appointment.
All the best
Titan.
Hi titan,
I didn't mean for you to answer them on the forum, but to ask yourself and think about your behaviour and how it's changed since being on a dopamine agonist, however I admire your honesty!
On reading your answers I found myself feeling very emotional I could feel how hurt you are, resenting the way that PD's imposed on your life. It brought this particular topic to mind. It's a few year old but the posts on there are quite moving, in fact, heart wrenching.
http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=carers-friends-and-family&topic=resentment&&page=1
regards
Cutiepie
ps By the way, I sent you a private message but I don't think you received it, unless it's gone to your junk mail. Sometimes I find messages from the forum in my junk mail.
I didn't mean for you to answer them on the forum, but to ask yourself and think about your behaviour and how it's changed since being on a dopamine agonist, however I admire your honesty!
On reading your answers I found myself feeling very emotional I could feel how hurt you are, resenting the way that PD's imposed on your life. It brought this particular topic to mind. It's a few year old but the posts on there are quite moving, in fact, heart wrenching.
http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=carers-friends-and-family&topic=resentment&&page=1
regards
Cutiepie
ps By the way, I sent you a private message but I don't think you received it, unless it's gone to your junk mail. Sometimes I find messages from the forum in my junk mail.
hi titan
The statement in the last paragraph of your recent post opens my mind to another way of looking at this issue?
Sharing our own experiences on this forum and giving feedback from neuro appointments etc, is of course a vital component in raising awareness and moving forward. This forum has without doubt over the last few years provided more help, advise and information about the potential risks of OCD side effects, than any other point of reference i can think of? All of us to some degree or other have become more aware of the risks and how to best manage them, thanks to this forum. However i bet if we surveyed every neuro in the UK and asked if they ever use the PUK website or looked through the forum, i would be surprised if any had! Yet this forum through the numerous debates which have taken place on OCD side effects, could provide a lot of key information to better inform those neuro's who still don't understand or get it. What this forum represents is REAL debates about this and other subjects involving real PwP living with PD. Yet the only people who seem to take an interest in what we say are the moderators....!!!
So one of my objectives as part of the steering group is to see how we can better use this forum and its various excellent debates to inform neuro's and other PD healthcare workers. I have lots of ideas popping around in my mind however if anyone else has any thoughts please let me know.
regards
bluey
The statement in the last paragraph of your recent post opens my mind to another way of looking at this issue?
Sharing our own experiences on this forum and giving feedback from neuro appointments etc, is of course a vital component in raising awareness and moving forward. This forum has without doubt over the last few years provided more help, advise and information about the potential risks of OCD side effects, than any other point of reference i can think of? All of us to some degree or other have become more aware of the risks and how to best manage them, thanks to this forum. However i bet if we surveyed every neuro in the UK and asked if they ever use the PUK website or looked through the forum, i would be surprised if any had! Yet this forum through the numerous debates which have taken place on OCD side effects, could provide a lot of key information to better inform those neuro's who still don't understand or get it. What this forum represents is REAL debates about this and other subjects involving real PwP living with PD. Yet the only people who seem to take an interest in what we say are the moderators....!!!
So one of my objectives as part of the steering group is to see how we can better use this forum and its various excellent debates to inform neuro's and other PD healthcare workers. I have lots of ideas popping around in my mind however if anyone else has any thoughts please let me know.
regards
bluey
I agree on broadcasting this info, but I doubt if any neuro, PD nurse or GP has the time (or desire) to log onto forums in their spare time.
We really need to send out a thread like this to relevant medical personnel, either electronically (cheapest method) or in printed format. If it catches their interest, they would then access the forum via a link to these pages.
We really need to send out a thread like this to relevant medical personnel, either electronically (cheapest method) or in printed format. If it catches their interest, they would then access the forum via a link to these pages.
Hi Blueeyes,
I have emailed [email protected] several times but had no replies. How long did it take for them to reply to you?
Thanks
Cutiepie
I have emailed [email protected] several times but had no replies. How long did it take for them to reply to you?
Thanks
Cutiepie
hi krugen68,
Sorry if i did not explain it very well. Yes of course i agree neuro's are not going to spend their weekend trawling through this forum looking at stuff! However as you quite rightly suggest, there are ways we can bring the two of them closer to each other? When i recently asked my neuro if he had ever looked at the PUK website or forum, he said no, what website! He currently has 700 PwP under his care. Yet most of his awareness about OCD side effects and its impact upon lives has come from a few patients who told him everything.
The more ways of raising awareness the better, and finding a way of linking this forum into the minds of neuro's, is just another base covered!
all the best
bluey
Sorry if i did not explain it very well. Yes of course i agree neuro's are not going to spend their weekend trawling through this forum looking at stuff! However as you quite rightly suggest, there are ways we can bring the two of them closer to each other? When i recently asked my neuro if he had ever looked at the PUK website or forum, he said no, what website! He currently has 700 PwP under his care. Yet most of his awareness about OCD side effects and its impact upon lives has come from a few patients who told him everything.
The more ways of raising awareness the better, and finding a way of linking this forum into the minds of neuro's, is just another base covered!
all the best
bluey
emailed who cutie, the email link was deleted from your post?
Hi Blueeyes,
I sent several emails to ~
campaigns @parkinsons .org.uk
I sent several emails to ~
campaigns @parkinsons .org.uk
Blueeyes, I tried to contact you but you're not accepting private messages
Hi Bluey
Do PUK send articles/pd blurb to the leading Neurology magazines ?
If so, they could surely send this thread in its entirety to them all, under a heading such as ' Medications - the reality of life at the sharp end' . It would only take one magazine to print it, then the rest might pick it up ..........
Peter
Do PUK send articles/pd blurb to the leading Neurology magazines ?
If so, they could surely send this thread in its entirety to them all, under a heading such as ' Medications - the reality of life at the sharp end' . It would only take one magazine to print it, then the rest might pick it up ..........
Peter
cutie, i sent you email, have to go out now but will give you a full update later today.
This topic is getting more depressing with every post. DAs have side effects that cannot be avoided. Benefits of Levadopa wear off . So what are we left with?
polly
none of the existing meds halt, let alone cure PD, that's a given. they paper over the cracks.
...but some of the new meds currently undergoing clinical trials look promising
none of the existing meds halt, let alone cure PD, that's a given. they paper over the cracks.
...but some of the new meds currently undergoing clinical trials look promising
Hi Cutiepie,
Just letting you know that i received your message.I sent a reply,maybe it has gone in your dodgy E-mails.If you haven,t received it,then i will post again.
All the best Titan.
Just letting you know that i received your message.I sent a reply,maybe it has gone in your dodgy E-mails.If you haven,t received it,then i will post again.
All the best Titan.
I give my permission for any and all posts which I have made on this forum to be read and used in any way thought to be useful by those involved in the treatment of patients with Parkinson's disease on the understanding that my real name will not be revealed.
Use this in any way you wish Blueeyes.
Anyone else want to offer their permission so that Blueeyes can send forum info to the campaign managers?
Use this in any way you wish Blueeyes.
Anyone else want to offer their permission so that Blueeyes can send forum info to the campaign managers?
The Campaign Manager already has my story, and permission.
All subject to no real names/addresses and not for profit.
Also not to breach forum rules.
All subject to no real names/addresses and not for profit.
Also not to breach forum rules.