Having received 18 months of support from a psychiatrist and neuro-psychologist after my husbands relationship- destroying behaviour on DAs, we have eventually reached a place where we can continue our life together.
Without the help we would, I am sure, no longer be here.
I am therefore saddened to hear from our wonderful Parkinson's nurse that she is unable to access this help for any other similarly affected patients.
As a consultant's referral is needed, they invariably refuse on the grounds that the drugs have been withdrawn and the problem is therefore resolved.
The aftermath of the lies, deceit, financial loss, criminal behaviour etc proves too awful for some to survive.
Any thoughts on how we persuade those in chage of the neuro- psychological services that those who prescribe the DAs and fail to warn of or detect the OCDs developing are not likely to refer the damaged people and let the professionals learn of the horrors inflicted?
I want to know that others can be helped as we were. Any ideas on how to achieve this?
GG
X
just want to say i am very very glad you have been helped. so many relationships have been destroyed.
best wishes t
best wishes t
I would go to the consultant and as when they became a psychologist. Its there job to diagnose and whether to treat or discharge. I got access to a clinical psychologist through my GP.
Some people should stick to what they are good at.
Some people should stick to what they are good at.
I am not sure quite what help you found Eck.
I feel the neuropsychologists should be the mainstay of the support for those in dire straits after DAs as they specialise in the psychological problems caused by neurological illnesses and the medication used to treat them.
In our area a GP cannot refer to them, only a consultant.
The neuro consultant who prescribed the massive overdose of DAs for many years refused to refer, our GP was turned down and only when my husband was admitted to hospital for a month in a dreadful physical and mental state did his hospital consultant geriatrician succeed in referring him.
The therapy was offered to us both in individual and joint sessions and literally saved our lives.
I need to know the system will change to make this available to all who need it, but how??
GG
I feel the neuropsychologists should be the mainstay of the support for those in dire straits after DAs as they specialise in the psychological problems caused by neurological illnesses and the medication used to treat them.
In our area a GP cannot refer to them, only a consultant.
The neuro consultant who prescribed the massive overdose of DAs for many years refused to refer, our GP was turned down and only when my husband was admitted to hospital for a month in a dreadful physical and mental state did his hospital consultant geriatrician succeed in referring him.
The therapy was offered to us both in individual and joint sessions and literally saved our lives.
I need to know the system will change to make this available to all who need it, but how??
GG
Hello Goldengirl,
If only all area's could have a neuropsychologist for people to see.
I think this is a good subject to take to National Office, I was speaking to John Bains Educational Dept just yesterday about the desperate need to get health bodies both general a mental to understand PD and the ongoing problems caused by the drugs and condition and put more into training. May I suggest to you to get in touch with him as the more people who highlight these issues the better, they need to hear it from the horses mouth so to speak.
Over the years we have spoken to many different groups of health workers and they always say they learn more from listening to us than any book, If any of the people on the forum let it be known to their doctors that they are willing to talk to students doctors or nurses then that will be a few more people with some knowledge and interest.
The last two that came to see me, one was very talkative and asked lots of questions and the other sat quietly by, but when I saw my doctor she said they were amazed at what I had told them and the quiet one had written a very good paper about pd and how it affects the lives of families.
Go for it girl
best wishes
vivian
If only all area's could have a neuropsychologist for people to see.
I think this is a good subject to take to National Office, I was speaking to John Bains Educational Dept just yesterday about the desperate need to get health bodies both general a mental to understand PD and the ongoing problems caused by the drugs and condition and put more into training. May I suggest to you to get in touch with him as the more people who highlight these issues the better, they need to hear it from the horses mouth so to speak.
Over the years we have spoken to many different groups of health workers and they always say they learn more from listening to us than any book, If any of the people on the forum let it be known to their doctors that they are willing to talk to students doctors or nurses then that will be a few more people with some knowledge and interest.
The last two that came to see me, one was very talkative and asked lots of questions and the other sat quietly by, but when I saw my doctor she said they were amazed at what I had told them and the quiet one had written a very good paper about pd and how it affects the lives of families.
Go for it girl
best wishes
vivian
Psychological support,what a joke,if I could laugh
--------------------------------------------------
Typically me and why I hate myself
-------------------------------------------------
Right,yeah!self pity,cry cry,good,I don,t care
I hate everything,I hope everybody hates me,I want you to hate me
Despise me,tell me I am scum,I want you to
I probably won,t sleep tonight
Does anybody take Mirtazapine
Well I am on the maximum 45mg
Not tonight though,cold Turkey
They can come and scrape me of the ******* floor
Then drain the alcohol from my soul
How can people play with others feelings
Backwards and forwards between doctor and psychologist
Why?,because they forwarded the wrong dose
Nothing we can do says surgery
See the psychologist in the morning says the shrinks secretary
My head has flipped,i'm gone
Okay,you coulden,t remember seeing me and what was said last week mr Psycho dude
Too many people,will have to check notes again
Well i'll tell you what happpenned at my 3 monthly
You ****** sat there with your stupid fat pan face and complained about a sore throat
I sat there sympathising
Then you talked about golf abroad
Whilst I can,t even afford a golf Tee
I said nothing,just said things are going bad again
Here,have a strepsil Mr coulden,t give a flying fuck
I am a fucking number
The last in line
So you can stuff your meds
Come swallow me,take me,I don,t care
Has anybody got to the heart of me,no!!give up
Oh,you already have,forgot
Tomorrow I am a big cross on your file
Would you like me to come and bleed all over your golfing shoes
I'm fast,I cut deep
Ive had enough
I walked 40 minutes to pick my Wife up from work
Dragging my stupid arsed leg around like a siamese appendage
The cars were going fast enough,the wheels appealed
The urge pulled and enticed
Okay,there's the railway line overhead
Parallel lines are so easy,but I hate waiting
Walking along the expressway,waist height,fast cars,bridge
Why?Why coulden,t I do it
I was half way,when you stand and look
One mocking drivers face would be enough
I pull myself on
So many options,the river is just over there
Everyone would be better off,nobody is mourned forever
I was in a mood
This was long before today
My grandson was born,I was the last to hear his name
It was all over facebook
Don,t want to know,I said to my 17 year ols Son
Want to hear it from my other Son(the Father),or my Wife
Yet again,I am unimportant
Am I selfish,if so,then that justifies the end more
A phone call from my Wife, 24 hours after going into hospital
We are coming home now,do you know what I forgot to tell you?
I slammed the phone down"Tell me when you get here"
The Mother in law had told her I was miffed.
You forgot to tell me one of the most important fucking things
Miffed,I was livid,jealous,upset to the pit of my stomach
You bet I was moody,seems trivial now,but at the time,well
I am extremely insecure
I was sullen,made my point felt
I am always taken for granted,cast aside,an oddity
Nothing unusual,just par for the course
Then my Grandson had a set back
Guilt!!,it's because of me,he's going to die
I wanted to die,what have I done?,What's wrong with me?
Drink helps,I like drink,I like to feel numb
Want to feel numb,gas and air me forever
Luckily my Grandson is a lot better,I held him tonight
Inside I am fuming over my meds mess up
Also amazed at the little bundle in my arms
But I am not normal am I
I start thinking about why I was given away as a baby
How can someone possibly do that
What was wrong with me What is wrong with me
I am dead inside,nothing,empty
I have tried everything
Now I give up anti depressants,I give up everything
Slip into oblivion
Throw your scorn at me
Say nothing
Hate me
Urge me to end it all
Everything is over,there is no more to give
Can you see the horrible person I am
I crawl under a rock
I scratch the surface
Tit on
Stick that in your positive pipe!!
--------------------------------------------------
Typically me and why I hate myself
-------------------------------------------------
Right,yeah!self pity,cry cry,good,I don,t care
I hate everything,I hope everybody hates me,I want you to hate me
Despise me,tell me I am scum,I want you to
I probably won,t sleep tonight
Does anybody take Mirtazapine
Well I am on the maximum 45mg
Not tonight though,cold Turkey
They can come and scrape me of the ******* floor
Then drain the alcohol from my soul
How can people play with others feelings
Backwards and forwards between doctor and psychologist
Why?,because they forwarded the wrong dose
Nothing we can do says surgery
See the psychologist in the morning says the shrinks secretary
My head has flipped,i'm gone
Okay,you coulden,t remember seeing me and what was said last week mr Psycho dude
Too many people,will have to check notes again
Well i'll tell you what happpenned at my 3 monthly
You ****** sat there with your stupid fat pan face and complained about a sore throat
I sat there sympathising
Then you talked about golf abroad
Whilst I can,t even afford a golf Tee
I said nothing,just said things are going bad again
Here,have a strepsil Mr coulden,t give a flying fuck
I am a fucking number
The last in line
So you can stuff your meds
Come swallow me,take me,I don,t care
Has anybody got to the heart of me,no!!give up
Oh,you already have,forgot
Tomorrow I am a big cross on your file
Would you like me to come and bleed all over your golfing shoes
I'm fast,I cut deep
Ive had enough
I walked 40 minutes to pick my Wife up from work
Dragging my stupid arsed leg around like a siamese appendage
The cars were going fast enough,the wheels appealed
The urge pulled and enticed
Okay,there's the railway line overhead
Parallel lines are so easy,but I hate waiting
Walking along the expressway,waist height,fast cars,bridge
Why?Why coulden,t I do it
I was half way,when you stand and look
One mocking drivers face would be enough
I pull myself on
So many options,the river is just over there
Everyone would be better off,nobody is mourned forever
I was in a mood
This was long before today
My grandson was born,I was the last to hear his name
It was all over facebook
Don,t want to know,I said to my 17 year ols Son
Want to hear it from my other Son(the Father),or my Wife
Yet again,I am unimportant
Am I selfish,if so,then that justifies the end more
A phone call from my Wife, 24 hours after going into hospital
We are coming home now,do you know what I forgot to tell you?
I slammed the phone down"Tell me when you get here"
The Mother in law had told her I was miffed.
You forgot to tell me one of the most important fucking things
Miffed,I was livid,jealous,upset to the pit of my stomach
You bet I was moody,seems trivial now,but at the time,well
I am extremely insecure
I was sullen,made my point felt
I am always taken for granted,cast aside,an oddity
Nothing unusual,just par for the course
Then my Grandson had a set back
Guilt!!,it's because of me,he's going to die
I wanted to die,what have I done?,What's wrong with me?
Drink helps,I like drink,I like to feel numb
Want to feel numb,gas and air me forever
Luckily my Grandson is a lot better,I held him tonight
Inside I am fuming over my meds mess up
Also amazed at the little bundle in my arms
But I am not normal am I
I start thinking about why I was given away as a baby
How can someone possibly do that
What was wrong with me What is wrong with me
I am dead inside,nothing,empty
I have tried everything
Now I give up anti depressants,I give up everything
Slip into oblivion
Throw your scorn at me
Say nothing
Hate me
Urge me to end it all
Everything is over,there is no more to give
Can you see the horrible person I am
I crawl under a rock
I scratch the surface
Tit on
Stick that in your positive pipe!!
Titan,
Although it may not seem like it to you, there are many here who care very much about you and what you're going through.
Words are inadequate, I won't try.
I repeat, We care.
Although it may not seem like it to you, there are many here who care very much about you and what you're going through.
Words are inadequate, I won't try.
I repeat, We care.
Hello Again Titan,
As Lorna say's there are many people who care about you and how you are feeling, it is such a shame that you have not found or been offered the help you need and so deserve.
Just reading your post is the very reason why you need the help of someone like a neuropsychologist but it needs to be the right one who really understands pd and the role drugs have affected you, please do reconsider and insist on seeing someone with that experience you and your family deserve that chance.
thinking of you vivian
As Lorna say's there are many people who care about you and how you are feeling, it is such a shame that you have not found or been offered the help you need and so deserve.
Just reading your post is the very reason why you need the help of someone like a neuropsychologist but it needs to be the right one who really understands pd and the role drugs have affected you, please do reconsider and insist on seeing someone with that experience you and your family deserve that chance.
thinking of you vivian
I agree...
... with Lorna - people here care about Titan and others in his situation
... with GG & Vivian - in Parkinson's generally and in DA side effects in particular I think there is not enough emphasis on psychological help. I think this is apparent in the enthusiasm to prescribe DA's despite the risk of catastrophic side effects in some people and in the lack of support generally to people dealing with the aftermath of DAs or even just the Dx itself.
EF
... with Lorna - people here care about Titan and others in his situation
... with GG & Vivian - in Parkinson's generally and in DA side effects in particular I think there is not enough emphasis on psychological help. I think this is apparent in the enthusiasm to prescribe DA's despite the risk of catastrophic side effects in some people and in the lack of support generally to people dealing with the aftermath of DAs or even just the Dx itself.
EF
Thank you Vivian and Elegant Fowl for your helpful suggestions in getting health professionals to make available the right type of support.
My heart aches for you Titan, in so much pain.
I only wish I could get you the help we received in the terrible aftermath of the DA/OCD nightmare.
I will ring the PDUK helpline next week and try to explain what support is needed. We know it is out there but is only available to a very few.
Be strong Titan and try to explain to your consultant that a neuro-psychologist is necessary to understand what has happened to your brain and help you to find peace.
Love GG
X
My heart aches for you Titan, in so much pain.
I only wish I could get you the help we received in the terrible aftermath of the DA/OCD nightmare.
I will ring the PDUK helpline next week and try to explain what support is needed. We know it is out there but is only available to a very few.
Be strong Titan and try to explain to your consultant that a neuro-psychologist is necessary to understand what has happened to your brain and help you to find peace.
Love GG
X
Hi Goldengirl and everybody,
I am a shipwreck of a man.You have me all wrong.Da's had an effect on me.But my problems started long before PD diagnosis and meds.I was on a psychological,psychiatrical,councelling,waiting list long before meds ever touched my lips.
PD is just an addition.My summary,recently revived has been lost again,but I will post it again,because,it is all encompassing.As yet,nobody has pulled it apart.So here it is again.
I could spill my blood along with 100,000 pages of why's,how's and evaluations.But here is my account a number of months ago,as yet dismantled or denied.Because IT IS!!,nothing more,nothing less.
Hi,
My Feelings and thoughts on Parkinsons,journey up to,into,views on,compulsive behaviour,and conlusion.As short as I could possibly make.Apologies.Whether you read or don,t is irrelevant,it is what it is,nothing more,nothing less.
--------------------------------------------------------------------------------------------------------------------------------
To describe how I was a child,well,every emotion in the book I suppose.Moods would swing,reclusive,yet a thrill seeker.Lacking confidence,extremely sporty,extremely fit.Any self worth was gained through my physical ability.I would not be beaten.Even though regularly beaten in another sense.Mental beatings are just as bad,no!!,even worse.
Doing the most" on the edge,risky things "followed into adolescense.I would climb the highest,shearest rockface,the tallest tree.Explore abandoned mines,even though DANGER!!!,signs were outside the entrance.Play chicken with traffic.Criminal things,like theft of peoples property,throwing stones at greenhouses and the thrill of being chased,running across railway lines,shoplifting,even though I diden,t require the items stolen.
I remember once being chased by the police.I was on a push bike and they cornered me in a field after ditching their police car at the roadside.With my heart in my mouth,and with them right on my tail,I managed to haul my bike over a six foot fence,get back on and escape.The excitement,the thrill,the buzz,I must have been about 15 years of age.Any dare was a challenge.Maybe I just diden,t care.Light and Dark that would be a good description.Always amiable,deep thinker,good concentration,patient,caring,thoughtful,sad,reflective and energetic,but always not belonging.After that incident I probably holed myself up in my room,cut out the world,always reading,until the next naughty escapade.I would also write poems/stories back then.
Leaving school,I drifted from one job to another,never worked in one place for more than 3 years.Always remained sporty throughout,discovered I had a low resting pulse when I was about 16-17,have had a long battle all my life with issues surrounding my Adoption and my upbringing that followed.These plus other emotional factors have had a destructive influence throughout my life and each relationship i have ever formed.I have no close friends,never have had.Seems like a distrust issue makes me keep everyone who attempts to get close at arms length.
So many people know me in passing,but that is the outer shell they see.Most would be shocked to know the true depth of my issues or the fact even that I have Parkinsons.I tend to blow my top and express myself across the forums,a release I suppose,mostly through poetry.Wanting people to both like me,like my poems,hate me and hate my poems is quite a weird one,even to me.Sometimes things we do cannot be fully quantified.
I have been married now for 26 years.Looking back,most of my life has been a waste,any potential has been washed away with time.There really is no hope.My poems reflect this.My Wife would echo my sentiments,there is no getting away from the fact that I am a complete failure.Why do I bother to come on here to air my thoughts and feelings,there are no answers I can give which are positive.Being trapped in the negative is the long deep furrow of my own ploughing.Nothing and nobody,drugs or devine intervention will ever change that.
Being many things and nothing leads to a constant state of flux,an inbetween battle which forever rages and spirals outwards,sucking in and then spitting out all and everything which makes unfortunate contact,caught in the maelstrom of misery that is me.
Things have now come to a head,a conclusion.When that happens,soul searching to the extremes reveals things known,unknown,unrealised,realised,surprising,depressing,but ultimately conclusive.To be honest my Wife does not understand or want to know the complexities of Parkinsons,a kind of bury her head in the sand sort of thing.I know partners suffer in their own right,so I should not be to judgemental.However,Parkinsons,medication,the whole package has brought what I and everybody that knows us thought what was once a strong marriage,to its knees.Many heart to hearts have uncovered problems much deeper,to say I,and indeed my Wife are in complete meltdown,is the understatement of a lifetime.Of course everything is my fault,well I agree,I really don,t care anymore.My Wife has made it clear she doesen,t either.
In relation to Parkinsons and the past nearly 3 years now since diagnosis,life coulden,t be any worse and my thoughts and feelings are forever dark and negative,even suicidal.Every avenue in every area of my life is blocked,terminated,a dead end.The exact details are too complicated and not necessary now.Things could not be any worse however.I need no sympathy or ask for none.I don,t deserve any,but at the same time feel that I am not deserving of the inadequate resourses,help,care,or lack of liason between so called functioning units within the health service and also the governmental bodies.
When things stall and no jump leads are applied,then everything grinds to a halt,just as the low resting pulse which is highlighted again.This phenomema being linked to a number of conditions and is being looked into deeply in other problematic areas,especially in the field of juvenile delinquency,and criminality.
Many theories,thoughts,ideas,and experiences rush around in my head concerning all areas of life in general.The sort of deep thinking done when considering the end.Concerning Parkinsons,specifically how it changes your life,alters your perception,makes you feel.Especially challenging is the medication side of things.I have thought a hole in the floor,have many ideas set aside which come from alternative angles/tangents to the one way motorway which is the M6 DA of destructive woe.
We are all individuals,chemical make up,DNA,brain patterns,childhood experiences,physical and mental capacities,going right back to the womb even.As such,to view as a collective,categorize or compartmentalize,is just a convenient way of explaining and justifying a problem,which has so many tributaries.I feel that to vilify a source(DA's)is the most obvious and deemed the easiest thing to do.Especially when it quenches the thirst of those blaming medication solely,without considering their own personal contribution to the equation,or seeking financial recompense.It is a huge/immense cauldren of possibilities.It is the mind set,the person who you are,the personal things,all that past,the emotional baggage and physical link to that emotional make up which dictate how each of us copes,or does not cope with Parkinsons.Or manages or does not manage with the various medications and combined interaction of these medications.Add to this the side effects,both wanted and unwanted.These side effects,including compulsive behavior,are probably the biggest,most important,and most frequently discussed topics within Parkinsons communities and indeed within Neurological circles themselves.
I believe that a predisposition or a tendency,whether physically or through upbringing,childhood,or life experiences to that point of medicational intervention, already dictates our reaction or adverse reaction to Parkinsons drugs,especially the Dopamine Agonists,which are the focal point of much derision and negative feedback.
I believe Dopamine Agonists are in themselves,not solely responsible for problems experienced by people who have had serious negative effects whilst taking them.In the same way as each child on a swing or similar ride has their limits,that line between fun and feeling ill/uneasy,wanting to get off.Parkinsons medications have that similar effect,indeed all medications are the same.We all have our different tolerance levels.
Tolerance could be based on body mass,physical make up,psychological make up,other drugs taken,predisposition to certain acknowledged side effects,including increased gambling,overeating,hyper sexuality,over spending etc etc.
I feel that other things to consider are the actual acceptance of pd,the life you lead at that moment,whether content,unhappy,working,unemployed,financially comfortable,psychologically stable,suffering from other mental illness,already highly sexed,already a regular gambler,already over eating, already have high credit card bill.The list is endless.All these areas need to be considered before introduction of most drugs/medications.What can't be considered are a persons acceptance and personal ability to deal/cope with the Parkinsons diagnosis itself,there are so many complex issues in this area.It is a life changing,personality changing,mood changing diagnosis,which some take better than others.We all have our own unique coping mechanisms.As such,I feel that these must be considered of extreme importance when viewing and evaluating the major influences and factors in any problems occurring when taking any Parkinson medication.
In my case,although deemed as being under the negative influence of Dopamine Agonists(Mirapexin),there are reasons and explainations that are understandable to myself,understandable to others,and in a way could be similar to those experienced by others going through similar.A feeling of loss,whilst at the same time relief by actually being given an explanation for problems we are experiencing on diagnosis is a heady mixture to take.It's not finality,as with terminal cancer for example,but in a way it is,in a lingering,uncertain sort of way.
Acceptance of Parkinsons varies from person to person,I suppose it depends were you are in life at that time,age also is a factor.Sixty plus,I suppose you could expect a decline in Neurological function,but when diagnosed at 45 years of age(as in my case),it is a little harder to take.Thoughts like,is it worth thinking about a pension,especially with the increase in pensionable age.Should I use up savings and enjoy certain things I want to do whilst still physically capable.Other things,like being more open and honest with your feelings I believe to be one of my problems.It is as if a giant egg timer has been turned upside down and the parkinsons sands of time visibly and uncontrollably slip through your fingers.
Things that perhaps you woulden,t have bought,woulden,t have done,woulden,t have said,are now viewed from a different perspective.I think Parkinsons in itself makes us more compulsive,it can certainly make us more depressed,that's for sure.What do you do if you are more depressed?What do you do if you feel your time on this earth has been cut short?You compensate,try to cheer yourself up,become more compulsive.Participate more in those things you enjoy the most,buy that expensive gift you always wanted,go on that dream holiday.The things you find pleasurable become a crutch,something to get you through each day.The extent of these emotions will vary from person to person.I can catagorically state with certainty though,that Parkinsons diagnosis is a life altering event and we all have our own personal coping mechanisms,which in most instances cannot be controlled,as every single event can be magnified,when before parkinsons there was less of an issue present.
Bearing the previous paragraph in mind,my crutch,and still is,is gambling.Not on line,not slot machines,not Bingo or casino,just horse racing and Greyhounds at the book makers.Having bet on horse racing for at least 28 years and being in a financial trap,without going into details,leaves my personal contribution to our household £82.00 approx DLA per month.That is the only monetary contribution I make.My Wife works full time shifts.I am not entitled to benefits,a National insurance issue to do with contributions because I worked part time for a number of years.So money is extremely tight.Getting a job and actually functioning in a job is a joke.
I had a couple of really good bets in.The brain thinks,keep doing that and its a way of keeping our heads above water.Alas,it is not that easy,soon the hour or Two at the bookies turns to several or more.Then other things come into play,become more stressed,don,t sleep,stay on the computer into the early hours,a downward spiral.We are not thousands in debt,I suppose if I would have had access to that sort of money,We could be Thousands in debt.Being mortage free,house paid for,that being one saving grace I suppose.
What I am trying to say is,how much is compulsive behaviour down to our own disposition,current situation,whether financial or otherwise.Then how much is down to the parkinsons itself,altering our overall perspective on life,how much is the medication,be it Dopamine agonists or otherwise.Maybe it's a combination of them all.It has to be.A domino effect,but how do you place a rogue domono in the falling sequence.It is hard and a matter of trial and error.At present I am cutting back on the Dopamine Agonist,but a large part of me is slightly aggrieved,because I feel it has become a scapegoat for what is really a much greater picture.
Personally,I feel that if I was financially secure,I would not have gone to the extremes of gambling I reached.Maybe I may have lost more,it shall remain unanswered.The fact that it was the thing/hobby I most enjoyed and the need for extra money,made it an issue,not necessarily a side effect caused by the drugs.
Many may disagree with this,most won,t care,but I just feel like voicing my own opinion on something that is having a dramatic impact on our family life right now.Of course,the betting has stopped,cards,cash handed over,but I can,t help but think that the meds situation is a large bowl of vegetable soup and the Medication is just the meat that,s blamed at the centre.
I have a lot more to say on the issue,but will have to end there for now,
All the best
Titan
Footnote
I have not said a lot more since,because nobody will discuss the TRUE complexities of PD.The control element,the pacification,the blame culture.The really,really deeper issues.So everybody carries on playing DA marbles whilst being Mind ******.Well I'm not one of you.I walk my own wavy line.But it's MINE.
Titan
I am a shipwreck of a man.You have me all wrong.Da's had an effect on me.But my problems started long before PD diagnosis and meds.I was on a psychological,psychiatrical,councelling,waiting list long before meds ever touched my lips.
PD is just an addition.My summary,recently revived has been lost again,but I will post it again,because,it is all encompassing.As yet,nobody has pulled it apart.So here it is again.
I could spill my blood along with 100,000 pages of why's,how's and evaluations.But here is my account a number of months ago,as yet dismantled or denied.Because IT IS!!,nothing more,nothing less.
Hi,
My Feelings and thoughts on Parkinsons,journey up to,into,views on,compulsive behaviour,and conlusion.As short as I could possibly make.Apologies.Whether you read or don,t is irrelevant,it is what it is,nothing more,nothing less.
--------------------------------------------------------------------------------------------------------------------------------
To describe how I was a child,well,every emotion in the book I suppose.Moods would swing,reclusive,yet a thrill seeker.Lacking confidence,extremely sporty,extremely fit.Any self worth was gained through my physical ability.I would not be beaten.Even though regularly beaten in another sense.Mental beatings are just as bad,no!!,even worse.
Doing the most" on the edge,risky things "followed into adolescense.I would climb the highest,shearest rockface,the tallest tree.Explore abandoned mines,even though DANGER!!!,signs were outside the entrance.Play chicken with traffic.Criminal things,like theft of peoples property,throwing stones at greenhouses and the thrill of being chased,running across railway lines,shoplifting,even though I diden,t require the items stolen.
I remember once being chased by the police.I was on a push bike and they cornered me in a field after ditching their police car at the roadside.With my heart in my mouth,and with them right on my tail,I managed to haul my bike over a six foot fence,get back on and escape.The excitement,the thrill,the buzz,I must have been about 15 years of age.Any dare was a challenge.Maybe I just diden,t care.Light and Dark that would be a good description.Always amiable,deep thinker,good concentration,patient,caring,thoughtful,sad,reflective and energetic,but always not belonging.After that incident I probably holed myself up in my room,cut out the world,always reading,until the next naughty escapade.I would also write poems/stories back then.
Leaving school,I drifted from one job to another,never worked in one place for more than 3 years.Always remained sporty throughout,discovered I had a low resting pulse when I was about 16-17,have had a long battle all my life with issues surrounding my Adoption and my upbringing that followed.These plus other emotional factors have had a destructive influence throughout my life and each relationship i have ever formed.I have no close friends,never have had.Seems like a distrust issue makes me keep everyone who attempts to get close at arms length.
So many people know me in passing,but that is the outer shell they see.Most would be shocked to know the true depth of my issues or the fact even that I have Parkinsons.I tend to blow my top and express myself across the forums,a release I suppose,mostly through poetry.Wanting people to both like me,like my poems,hate me and hate my poems is quite a weird one,even to me.Sometimes things we do cannot be fully quantified.
I have been married now for 26 years.Looking back,most of my life has been a waste,any potential has been washed away with time.There really is no hope.My poems reflect this.My Wife would echo my sentiments,there is no getting away from the fact that I am a complete failure.Why do I bother to come on here to air my thoughts and feelings,there are no answers I can give which are positive.Being trapped in the negative is the long deep furrow of my own ploughing.Nothing and nobody,drugs or devine intervention will ever change that.
Being many things and nothing leads to a constant state of flux,an inbetween battle which forever rages and spirals outwards,sucking in and then spitting out all and everything which makes unfortunate contact,caught in the maelstrom of misery that is me.
Things have now come to a head,a conclusion.When that happens,soul searching to the extremes reveals things known,unknown,unrealised,realised,surprising,depressing,but ultimately conclusive.To be honest my Wife does not understand or want to know the complexities of Parkinsons,a kind of bury her head in the sand sort of thing.I know partners suffer in their own right,so I should not be to judgemental.However,Parkinsons,medication,the whole package has brought what I and everybody that knows us thought what was once a strong marriage,to its knees.Many heart to hearts have uncovered problems much deeper,to say I,and indeed my Wife are in complete meltdown,is the understatement of a lifetime.Of course everything is my fault,well I agree,I really don,t care anymore.My Wife has made it clear she doesen,t either.
In relation to Parkinsons and the past nearly 3 years now since diagnosis,life coulden,t be any worse and my thoughts and feelings are forever dark and negative,even suicidal.Every avenue in every area of my life is blocked,terminated,a dead end.The exact details are too complicated and not necessary now.Things could not be any worse however.I need no sympathy or ask for none.I don,t deserve any,but at the same time feel that I am not deserving of the inadequate resourses,help,care,or lack of liason between so called functioning units within the health service and also the governmental bodies.
When things stall and no jump leads are applied,then everything grinds to a halt,just as the low resting pulse which is highlighted again.This phenomema being linked to a number of conditions and is being looked into deeply in other problematic areas,especially in the field of juvenile delinquency,and criminality.
Many theories,thoughts,ideas,and experiences rush around in my head concerning all areas of life in general.The sort of deep thinking done when considering the end.Concerning Parkinsons,specifically how it changes your life,alters your perception,makes you feel.Especially challenging is the medication side of things.I have thought a hole in the floor,have many ideas set aside which come from alternative angles/tangents to the one way motorway which is the M6 DA of destructive woe.
We are all individuals,chemical make up,DNA,brain patterns,childhood experiences,physical and mental capacities,going right back to the womb even.As such,to view as a collective,categorize or compartmentalize,is just a convenient way of explaining and justifying a problem,which has so many tributaries.I feel that to vilify a source(DA's)is the most obvious and deemed the easiest thing to do.Especially when it quenches the thirst of those blaming medication solely,without considering their own personal contribution to the equation,or seeking financial recompense.It is a huge/immense cauldren of possibilities.It is the mind set,the person who you are,the personal things,all that past,the emotional baggage and physical link to that emotional make up which dictate how each of us copes,or does not cope with Parkinsons.Or manages or does not manage with the various medications and combined interaction of these medications.Add to this the side effects,both wanted and unwanted.These side effects,including compulsive behavior,are probably the biggest,most important,and most frequently discussed topics within Parkinsons communities and indeed within Neurological circles themselves.
I believe that a predisposition or a tendency,whether physically or through upbringing,childhood,or life experiences to that point of medicational intervention, already dictates our reaction or adverse reaction to Parkinsons drugs,especially the Dopamine Agonists,which are the focal point of much derision and negative feedback.
I believe Dopamine Agonists are in themselves,not solely responsible for problems experienced by people who have had serious negative effects whilst taking them.In the same way as each child on a swing or similar ride has their limits,that line between fun and feeling ill/uneasy,wanting to get off.Parkinsons medications have that similar effect,indeed all medications are the same.We all have our different tolerance levels.
Tolerance could be based on body mass,physical make up,psychological make up,other drugs taken,predisposition to certain acknowledged side effects,including increased gambling,overeating,hyper sexuality,over spending etc etc.
I feel that other things to consider are the actual acceptance of pd,the life you lead at that moment,whether content,unhappy,working,unemployed,financially comfortable,psychologically stable,suffering from other mental illness,already highly sexed,already a regular gambler,already over eating, already have high credit card bill.The list is endless.All these areas need to be considered before introduction of most drugs/medications.What can't be considered are a persons acceptance and personal ability to deal/cope with the Parkinsons diagnosis itself,there are so many complex issues in this area.It is a life changing,personality changing,mood changing diagnosis,which some take better than others.We all have our own unique coping mechanisms.As such,I feel that these must be considered of extreme importance when viewing and evaluating the major influences and factors in any problems occurring when taking any Parkinson medication.
In my case,although deemed as being under the negative influence of Dopamine Agonists(Mirapexin),there are reasons and explainations that are understandable to myself,understandable to others,and in a way could be similar to those experienced by others going through similar.A feeling of loss,whilst at the same time relief by actually being given an explanation for problems we are experiencing on diagnosis is a heady mixture to take.It's not finality,as with terminal cancer for example,but in a way it is,in a lingering,uncertain sort of way.
Acceptance of Parkinsons varies from person to person,I suppose it depends were you are in life at that time,age also is a factor.Sixty plus,I suppose you could expect a decline in Neurological function,but when diagnosed at 45 years of age(as in my case),it is a little harder to take.Thoughts like,is it worth thinking about a pension,especially with the increase in pensionable age.Should I use up savings and enjoy certain things I want to do whilst still physically capable.Other things,like being more open and honest with your feelings I believe to be one of my problems.It is as if a giant egg timer has been turned upside down and the parkinsons sands of time visibly and uncontrollably slip through your fingers.
Things that perhaps you woulden,t have bought,woulden,t have done,woulden,t have said,are now viewed from a different perspective.I think Parkinsons in itself makes us more compulsive,it can certainly make us more depressed,that's for sure.What do you do if you are more depressed?What do you do if you feel your time on this earth has been cut short?You compensate,try to cheer yourself up,become more compulsive.Participate more in those things you enjoy the most,buy that expensive gift you always wanted,go on that dream holiday.The things you find pleasurable become a crutch,something to get you through each day.The extent of these emotions will vary from person to person.I can catagorically state with certainty though,that Parkinsons diagnosis is a life altering event and we all have our own personal coping mechanisms,which in most instances cannot be controlled,as every single event can be magnified,when before parkinsons there was less of an issue present.
Bearing the previous paragraph in mind,my crutch,and still is,is gambling.Not on line,not slot machines,not Bingo or casino,just horse racing and Greyhounds at the book makers.Having bet on horse racing for at least 28 years and being in a financial trap,without going into details,leaves my personal contribution to our household £82.00 approx DLA per month.That is the only monetary contribution I make.My Wife works full time shifts.I am not entitled to benefits,a National insurance issue to do with contributions because I worked part time for a number of years.So money is extremely tight.Getting a job and actually functioning in a job is a joke.
I had a couple of really good bets in.The brain thinks,keep doing that and its a way of keeping our heads above water.Alas,it is not that easy,soon the hour or Two at the bookies turns to several or more.Then other things come into play,become more stressed,don,t sleep,stay on the computer into the early hours,a downward spiral.We are not thousands in debt,I suppose if I would have had access to that sort of money,We could be Thousands in debt.Being mortage free,house paid for,that being one saving grace I suppose.
What I am trying to say is,how much is compulsive behaviour down to our own disposition,current situation,whether financial or otherwise.Then how much is down to the parkinsons itself,altering our overall perspective on life,how much is the medication,be it Dopamine agonists or otherwise.Maybe it's a combination of them all.It has to be.A domino effect,but how do you place a rogue domono in the falling sequence.It is hard and a matter of trial and error.At present I am cutting back on the Dopamine Agonist,but a large part of me is slightly aggrieved,because I feel it has become a scapegoat for what is really a much greater picture.
Personally,I feel that if I was financially secure,I would not have gone to the extremes of gambling I reached.Maybe I may have lost more,it shall remain unanswered.The fact that it was the thing/hobby I most enjoyed and the need for extra money,made it an issue,not necessarily a side effect caused by the drugs.
Many may disagree with this,most won,t care,but I just feel like voicing my own opinion on something that is having a dramatic impact on our family life right now.Of course,the betting has stopped,cards,cash handed over,but I can,t help but think that the meds situation is a large bowl of vegetable soup and the Medication is just the meat that,s blamed at the centre.
I have a lot more to say on the issue,but will have to end there for now,
All the best
Titan
Footnote
I have not said a lot more since,because nobody will discuss the TRUE complexities of PD.The control element,the pacification,the blame culture.The really,really deeper issues.So everybody carries on playing DA marbles whilst being Mind ******.Well I'm not one of you.I walk my own wavy line.But it's MINE.
Titan
hello titan,
i am not a neurologist , i am not a doctor, i am not qualified in any relevant way, but if there was ever anyone lying in the middle of the road with their leg at an impossible angle, one might guess at a broken leg. likewise, in neon lights 12 feet high the words 'bi-polar' seem to flash on and off when i read your posts. it screams out bi-polar.
as i say, i speak from utter ignorance, but i felt i had to ask - has this been a diagnosis?
t
i am not a neurologist , i am not a doctor, i am not qualified in any relevant way, but if there was ever anyone lying in the middle of the road with their leg at an impossible angle, one might guess at a broken leg. likewise, in neon lights 12 feet high the words 'bi-polar' seem to flash on and off when i read your posts. it screams out bi-polar.
as i say, i speak from utter ignorance, but i felt i had to ask - has this been a diagnosis?
t
Hi Turnip,
Seeing as you are the only person to acknowledge logic.I t is only fair to answer your straight forward question.
My mood is in the constellations,it rakes up the barren earth untouchable in a graveyard.It is at present elevated to Alcohol fuelled proportions which makes my mind think,my voice talk to unbelievable and insatiable stellar proportions.Waiting for the dragging undercurrent.The all time consuming ultimate nosedive.
Am I bi-polar,am I Border personality disorder.Well I have had councelling,psychologist for months.CBT was a no go with him,can you hypnotise the unhypnisable.Is that a new word(spell check)who cares?
I am a wavey line,an uncontrollable force of bad tidings.I am meant to be having (top person)CBT.Waiting list.I see idiots in between,who frustrate the **** out of me.They have no idea.I know what I am ,without being able to control what I am.
I have ditched the psychologist and stopped dead 45mg evening meds of mirtazapine.They phoned me,it is dangerous.I said I don,t care.So I have drunk my way through it and spaced myself through it.Do you like valium?,and other helpful concoctions.I await serious help,it never arrives.Nobody really wants to know.Have you watched "Little miss Sunshine",enjoyed that last night.
They said they will check list on CBT ,dIden,t even know I was back on it,what A joke.Not seeing another psychologist though in meantime.Hissy fit,I,m not a number,Thinking Iron Maiden now.Must put you tube on.Oops,listening to it.Got favesong of moment,play it constant.Avenged Sevenfold- Gunslinger,you may like.
I reissued my last piece hear,do you hear,MEan here, because,if you read it properly.It explains everything about everyone,pd or otherwise.There is no feedback,because there is no argument.Nothing more needs to be said here,It is a precis,a summary that explains the heart of pd,meds and complications.Does that make me manic.
I am a wavy line meandering my own disjointed path through life in an up and down,sad happy clown sort of unhappy,happy,flip flop floppy,falling over my feet sort of way.
And I don,t care any more
but take care
cos I know you care Turnip
As I do you
Titan
Seeing as you are the only person to acknowledge logic.I t is only fair to answer your straight forward question.
My mood is in the constellations,it rakes up the barren earth untouchable in a graveyard.It is at present elevated to Alcohol fuelled proportions which makes my mind think,my voice talk to unbelievable and insatiable stellar proportions.Waiting for the dragging undercurrent.The all time consuming ultimate nosedive.
Am I bi-polar,am I Border personality disorder.Well I have had councelling,psychologist for months.CBT was a no go with him,can you hypnotise the unhypnisable.Is that a new word(spell check)who cares?
I am a wavey line,an uncontrollable force of bad tidings.I am meant to be having (top person)CBT.Waiting list.I see idiots in between,who frustrate the **** out of me.They have no idea.I know what I am ,without being able to control what I am.
I have ditched the psychologist and stopped dead 45mg evening meds of mirtazapine.They phoned me,it is dangerous.I said I don,t care.So I have drunk my way through it and spaced myself through it.Do you like valium?,and other helpful concoctions.I await serious help,it never arrives.Nobody really wants to know.Have you watched "Little miss Sunshine",enjoyed that last night.
They said they will check list on CBT ,dIden,t even know I was back on it,what A joke.Not seeing another psychologist though in meantime.Hissy fit,I,m not a number,Thinking Iron Maiden now.Must put you tube on.Oops,listening to it.Got favesong of moment,play it constant.Avenged Sevenfold- Gunslinger,you may like.
I reissued my last piece hear,do you hear,MEan here, because,if you read it properly.It explains everything about everyone,pd or otherwise.There is no feedback,because there is no argument.Nothing more needs to be said here,It is a precis,a summary that explains the heart of pd,meds and complications.Does that make me manic.
I am a wavy line meandering my own disjointed path through life in an up and down,sad happy clown sort of unhappy,happy,flip flop floppy,falling over my feet sort of way.
And I don,t care any more
but take care
cos I know you care Turnip
As I do you
Titan
Hi, Titan,
I don't really know you, but I care,
You've suffered badly, unimaginably, in your past, and are still suffering now, and no one but you can know just how much. And I care.
You feel you've no family or friends who understand.I care.
I don't know how to help, but I care. And I'm sure lots of others on the forum care too.
I know it's only a drop in the ocean in your presently desperate world, but hold on to it for now. Things can at least improve.We do care.
I don't really know you, but I care,
You've suffered badly, unimaginably, in your past, and are still suffering now, and no one but you can know just how much. And I care.
You feel you've no family or friends who understand.I care.
I don't know how to help, but I care. And I'm sure lots of others on the forum care too.
I know it's only a drop in the ocean in your presently desperate world, but hold on to it for now. Things can at least improve.We do care.
Hi Titan,
Sorry not to reply to your post before but I have been trying to sort out various problems with my husband's care over the last few days. I have just read your last couple of posts and of course what you say is true for most people in life, none of us has a problem free life even before pd that's just the nature of the beast.
You have to cope with things your way just as other's do, but most of us care so I still say I hope you manage to get some peace in your life.
best wishes
vivian
Sorry not to reply to your post before but I have been trying to sort out various problems with my husband's care over the last few days. I have just read your last couple of posts and of course what you say is true for most people in life, none of us has a problem free life even before pd that's just the nature of the beast.
You have to cope with things your way just as other's do, but most of us care so I still say I hope you manage to get some peace in your life.
best wishes
vivian
As suggested in an earlier post, I rang the Helpline today and asked to speak to a member of the Education dept.
I explained that I had received wonderful help ,with my husband and separately, in the aftermath of his horrific DA/OCD behaviour and that this help was not being made available to other patients because of lack of knowlwdge within Neuropsychology depts of the side effects of DAS.
I was most disappointed by the response.
I was informed that the Ed. Dept only speaks to Health professionals and I would be contacted by a local worker although she wouldn't be available for the next few days.
I explained that from discussions with my neuropsychologist it was not a local but a national issue and this was passed on to the Ed Dept who still refused to speak to me.
The kind operator on the helpline suggested I write with full details of our experience to the national office.
I had found it difficult to ring and prepare myself to talk about the kind of expert support we had received as I knew it would bring back very upsetting memories.
I did however want to do something to improve the system to allow others access to such professional and effective help by trying to explain why it is virtually impossible to be referred to this service and the need for education for these professionals.
I am not sure I can summon up the courage to put it all down on paper.
I have posted details on the forum recently and over the last 2 years .Cannot the Ed Dept access that or are they not interested in the experiences of DA victims?
GG
I explained that I had received wonderful help ,with my husband and separately, in the aftermath of his horrific DA/OCD behaviour and that this help was not being made available to other patients because of lack of knowlwdge within Neuropsychology depts of the side effects of DAS.
I was most disappointed by the response.
I was informed that the Ed. Dept only speaks to Health professionals and I would be contacted by a local worker although she wouldn't be available for the next few days.
I explained that from discussions with my neuropsychologist it was not a local but a national issue and this was passed on to the Ed Dept who still refused to speak to me.
The kind operator on the helpline suggested I write with full details of our experience to the national office.
I had found it difficult to ring and prepare myself to talk about the kind of expert support we had received as I knew it would bring back very upsetting memories.
I did however want to do something to improve the system to allow others access to such professional and effective help by trying to explain why it is virtually impossible to be referred to this service and the need for education for these professionals.
I am not sure I can summon up the courage to put it all down on paper.
I have posted details on the forum recently and over the last 2 years .Cannot the Ed Dept access that or are they not interested in the experiences of DA victims?
GG
Hi goldengirl,
Sorry to hear you feel you've been having trouble passing along your message.
Your enquiry was passed to my colleague Suma. She mentioned to me yesterday that she would be giving you a ring to see how she can help. I sent her a link for this thread to that team which they are reviewing. Unfortunately, on this current forum, we don't really have the capacity to pull up all of the last two years of your posts to show to her.
I can understand that it might be very painful to have to repeat your experiences if these dredge up a lot for you. Still, it may not be necessary to do this.
I will check in with her today and update you on the situation.
I hope it helps,
Ezinda
Sorry to hear you feel you've been having trouble passing along your message.
Your enquiry was passed to my colleague Suma. She mentioned to me yesterday that she would be giving you a ring to see how she can help. I sent her a link for this thread to that team which they are reviewing. Unfortunately, on this current forum, we don't really have the capacity to pull up all of the last two years of your posts to show to her.
I can understand that it might be very painful to have to repeat your experiences if these dredge up a lot for you. Still, it may not be necessary to do this.
I will check in with her today and update you on the situation.
I hope it helps,
Ezinda
Thanks Ezinda.
Suma phoned today and I had a long conversation with her.
She is going to look at ways of targetting Neuropsychologists and giving them info on the DA/OCD problem and the barriers to referral.
She is going to stress that they have the expertise and skills to help those in turmoil in the aftermath of withdrawal.
I feel this is a first step in identifying the best sources of help and ensuring referral is possible.Hopefully others will benefit as we have done.
I look forward to following the progress of the Impulsive Disorder group.
GG
Suma phoned today and I had a long conversation with her.
She is going to look at ways of targetting Neuropsychologists and giving them info on the DA/OCD problem and the barriers to referral.
She is going to stress that they have the expertise and skills to help those in turmoil in the aftermath of withdrawal.
I feel this is a first step in identifying the best sources of help and ensuring referral is possible.Hopefully others will benefit as we have done.
I look forward to following the progress of the Impulsive Disorder group.
GG
GG & ezinda
Thanks for keeping us up to date on this.
I count myself as a DA/OCD near miss so its good to see things happening to raise awareness among professionals.
EF
Thanks for keeping us up to date on this.
I count myself as a DA/OCD near miss so its good to see things happening to raise awareness among professionals.
EF
Hi
Not posted for ages as not had the energy as still feel at the end of my tether !!!
Titan your posts resonate so much with our situation but I am replying as the o/h of someone with PD and the effects of DA/OCD's .
I cried on the day that we were told that o/h had got funding for Duadopa pump as unrealistically thought it would resolve all the DA aftermath but alas not really !!!
We have been very lucky that we have had access to excellent Psycho/therapist certainly expert in CBT etc but alas sadly my husband still continues to live in his mediacation fuelled PD world and still in deniale
I do feel unless the person is willing to engage in therapy it will not help and if they are that person who has been brought up to think its 'piffle' as his parents do it is a waste of resource and money.
It is heartwarming to hear that this has worked for you and hubbie GG and certainly do not feel that this service is not needed to help more people.
Dear Titan do agreee with Turnip reading your posts I would agree with the Bi-polar ? sadly have had experience in our family with a loved one having BP with a worst outcome ever so beg you if you even think this may be you please tell someone .
xxxx
Not posted for ages as not had the energy as still feel at the end of my tether !!!
Titan your posts resonate so much with our situation but I am replying as the o/h of someone with PD and the effects of DA/OCD's .
I cried on the day that we were told that o/h had got funding for Duadopa pump as unrealistically thought it would resolve all the DA aftermath but alas not really !!!
We have been very lucky that we have had access to excellent Psycho/therapist certainly expert in CBT etc but alas sadly my husband still continues to live in his mediacation fuelled PD world and still in deniale
I do feel unless the person is willing to engage in therapy it will not help and if they are that person who has been brought up to think its 'piffle' as his parents do it is a waste of resource and money.
It is heartwarming to hear that this has worked for you and hubbie GG and certainly do not feel that this service is not needed to help more people.
Dear Titan do agreee with Turnip reading your posts I would agree with the Bi-polar ? sadly have had experience in our family with a loved one having BP with a worst outcome ever so beg you if you even think this may be you please tell someone .
xxxx