Opinion


#1
Hi,
Spent 9 hours in the bookmakers the other day.Constant bets,virtually every race.Diden,t drink,diden,t eat,diden,t pee,felt elation,felt terrible,felt nothing,felt skint,am skint,am nothing.
Do I have a problem,this is no joke!!!
Of course I know the answer.As ever thus.Nobody can help.
Titan

#2
Hi Titan
Your right, No one can help, people can give good advice, but only you yourself can make those changes and decisions.
If your in the bookies for 9 hours I hate to say it my friend but YES you do have a big problem.
There is also some anger inside you or be it frustration I am not sure. Titan I have always known you to be a caring person on this forum with wise words given to others and it saddens me to see you this way on a self destruct route.

Thinking of you love PB x

#3
Posted - 16 May 2012 11:30
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I posted this on the driving thread but now have found your post here. You know Titan from many previous posts, that you are in the grip of terrible DA OCDs and are terrified of coming off them.
Please seek expert help. My husband has suffered agonies in withdrawing but now life is becoming good again and it is all worth it.
Don't let the drug companies ruin your life.Here's my post again,

Dearest Titan
It is not all gone.
We are still here on the forum, the PDUK helpline is still there with trained counsillors and nurses, the parkinson's nurse is still there and the GP and neurologist.
PLEASE contact someone and tell them how hopeless you are feeling.
The Parkinsons can't be taken away but so many people care about you and help is out there to feel more positive and find enjoyment in the altered life you have., but you have to tell someone that you need it...
Take care of yourself and keep in touch.
Love gg

#4
Titan
there are two parts to your brain
one is loving every minute of this, one is hating every second
one wants to carry on regardless destroying everything, one wants to save what's left
one wants to stay on the drugs because they leave it in charge, one wants to come off them to regain self-control
one wants to phone for help the other makes sure its when the helplines are shut
one justifies anything that provides stimulation, one regrets them.
you, the conscious self need to bring your other half back in line by wrestling the drugs from its grip. As long as the beast has the DA whip you will be slave instead of master. you are right no-one can help - you have to do it by overcoming your other self long enough to ask to be on different drugs.

thats my opinion

#5
You've made a massive step in recognising you may have a problem, for a lot of people spending 9 hours in the bookies is a normal day but they don't have PD !
To be able to stand back and look at yourself in detail and think is this what i should be doing or am i a slave to PD and its meds. Just try and get some clarity on what you are doing and where you are going. Before you do anything count to 10 and let the urge subside a little then you can decide whos making the decisions you or PD. It works for me !!

#6
sorry for posting this again but thought might get an answer on this thread.....
Hi Titania and any one else who may be able to help x

Titania ...Welcome .... hope you find using the forum supportive and helpful.

Was wondering if you think the sinemet is causing/exacerbating your ocd etc the reason i ask is my o/h who recently had PEGJ inserted to deliver Duadopa and now is on Sinemet overnight has started exhibiting odd/icd behaviours again . I am at the end of my tether as although i realise that PD in its own right can cause these behaviours was hoping that the change from DA's to Levadopa would minimise this ?!!!!!

#7
Hello Bubble,

My husband has had pd for thirty years in August as you may know, he has had some ocd problems which as I was at home I kept an eye on but it did cause some arguments in fact it was very stressful but most of the drugs can cause these problems not just agonists, madopar and sinemet over the long term can do the same but perhaps not as bad.When he was at home our consultant had to reduce the requip even though he was only on 6mg down to 4mg, we had to try him off requip all together but he was suffering so badly hardly able to move and shaking all the time that he was put back on 4mg. I have a friend on 24mg per day and has had some confusion so he was reduced down to 16mg. My point is that as we know it all depends on how it affects the person but please be aware that all the drugs cause ocb in some people and especially the longer you have the condition.
best wishes
vivian

#8
Many thanks Vivian for your reply, I knew this was probably the case but suppose you always hope it's not.

I do admire you for supporting your husband for this long. personally after 10 years not sure I can anymore its not so much about the change in behaviours it is the constant denial and inability to realise that there is a problem. We had lots of support over the years from brilliant PD nurse and Neuro but think they are running out of ideas how to help.

Sorry for moan but bl**dy PD.

Take care x

#9
Hi Bubble,

Don't worry about a moan this condition is so very difficult for all the family and my husband wouldn't admit there was a problem, to a certain extent they can't help it as our pd nurse explained but to carer's it sometime seems deliberate I know several carer's have the same problems. The only way to stop these things happening is to cut down on the doparmine as well, which of course you can't sometimes. I am always having to deal with something even now my husband is in a nursing home as the understanding just isn't out there anywhere and I find it so frustrating after all these years to have to keep explaing about the condition and all its straits. I have offered to give a talk to the carer's and they have had the education talks from pduk but they need to hear about the indivual they are looking after as well.I wish I had kept a diary of our life with pd in fact I think it would make several but I was always too tired at the end of the day it all becomes a blur really.
anyway enough from me keep your chin up and get a relaxing tape or cd I have mine on all night even now I am on my own as your body is so used to having a couple of hours of sleep it takes forever to adjust.
Keep Smiling
best wishes
vivian
ps we have been married for 46years going on 47

#10
Good evening one and all.
Like others with PD I read all the posts. Have learned so much since dx 5 years ago., because of this forum.
It is so hard at times to be positive for those of us who are pwp, and so hard for the carers of loved ones.
It amazes me just how determined and strong people can be. As for me I would hate to lose my sense of humour as life would be so dull.
Each day I notice a change in me and worry how I will cope.
The meds work well and make me function but in time they will prove to be less effective. Then what!!

It is so painful sometimes to read how everyone copes whether it is the person with PD or the carer. None of us choose to be in this situation, i guess it was the hand we were dealt I REALLY DO NOT KNOW. All I do know is that it has taken over my life and I bl###y hate it, is it gonna go away NO.

So I take my tablets morning and night, some days good some days bad. On the outside I look okay, but on the inside I'm falling apart.
Not easy for any of us, my love and respect to you all.

PB x

#11
hello poshbird,

What you say is so true for everyone, although we all want a cure, I feel quite strongly that more thought and support needs to given to the many who struggle every day and night for so many years living with this condition. Years ago the pduk used to have a counsellor based at N/office and although she was the only one she used to come around to branches and give a really good talk, also the was a lady who arranged group holidays both here and abroad and a book of suitable places for members to have a holiday.
Apart from well managed medication everyone needs all the support for a better managed life and in some case this would include respite for the carer or a holiday where there is care available so that you can holiday together.
I had better not go on as I feel passionate about this and can't do much about myself . come on big win with the lotto please.
love and best wishes
vivian

#12
Hello Vivian ... I see you are still keeping your spirits up WELL DONE . I am sure you have your mements lol..

I wondered if you have an opinion about the following .

My husband has been on Sinemet plus x 4 daily along with a sinemet CR at bedtime .

I cannot say we have seen a big difference /help although it did help with his sleep .. Of course you cannot really tell unless you stop taking them .

I injured my foot 3 weeks ago so of course it must be makng him fel more vunerable ( I DO SUCH A LOT FOR ) .. Also the fact that he couldn't help me ..

On top of that we are having this very hot weather ..

He has ben having awful trouble nodding off all the time and dreadful drooling./ slowness . Especially about an hour after taking his Sinemet ..I am beginning to wonder if he is having toooo much Sinemet now .. Like I said am afraid to stop the Sinemet after he has been taking them for 5 years ..



I am going to make an appointment to see his consultant ..

#13
Hello Jonnie and Posh bird,
How I agree with your comments P/B it really is a horrible condition which we are all stuck with and over the years I am amazed how people are coping with daily life.
I recently had a phone call from the GP where my husband is and after I thought what a strange conversation, obviously a nurse who shall remain nameless had been saying that I wanted changes to his meds (which was not the case) anyway I wrote to him and said that I was somewhat concerned and confused by this conversation and that I had looked after my husband for all these years and had the respect of his consultant and GP here where I live, M/H is 1 hour away from me hence he has different GP and Consultant hm? I explained that our son and myself had tried to support my other half as much as possible both with meds and quality of life and we would continue to do so and support the carer's and home likewise. He didn't reply then I had to ring him because the said nurse said that M/H was not allowed a drink of alcohol and that the doctor had said this,( he only drinks while watching sport and then its only one or two) So off to phone and ring the Doc who said that he didn't say he couldn't have a drink and that he felt that there was some buck passing going here and he wouldn't be a party to it and that was that he said he was busy and went. What a carry on just to give a chap a bit of pleasure, it sure isn't boring, since then hubby has been to hospital twice and now wants me to sort out his money so he can get a battery for his camera as the chap in charge seems to be tight with letting him have any, so off to the phone again.If you didn't laugh you would cry and scream!!! Oh well put Rod stewart on again and have some lively music.
As to your question re dozing off and drooling you can get medication to help with the drooling and dozing off is very common with pwp's but it is worth asking the doc when your next app comes up.
best wishes
vivian

#14
PS so sorry to hear about the ankle/foot,
I do go off on another track sometimes.
keep smiling.
vivian

#15
Hi,
My Feelings and thoughts on Parkinsons,journey up to,into,views on,compulsive behaviour,and conlusion.As short as I could possiibly make.Apologies.Whether you read or don,t is irrelevent,it is what it is,nothing more,nothing less.

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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 happpens,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 destuctive 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 bettter 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 45years 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

#16
Titan
thanks for posting a very full and candid summary of your situation. I have skim read it and I recognise so much of it from my situation. It deserves a proper reading and I will do that later today and I hope others will too.

take care

EF

#17
Hello Titan,

Thank you for posting your feelings about pd, I think quite a few people would agree with you including myself. My husband starting gambling a bit on a tv show but luckily I was alerted to it by the phone company, so I was able to block certain channels. He has many other obsessive problems but they can not change his medication at his late stage of PD as he becomes completely immobile, so the home have to manage him the best they can,this is a constant worry as they often get to the point of saying they can 't keep him anymore and there just isn't anywhere he can go, as it is he is and hour away from me.
I wish you well and please keep highlighting these problems because something needs to be done to address a situation that many families struugle with.
best wishes
vivian

#18
Dearest Titan
We have been down this road many times.
You have clearly suffered terribly in your younger years and have many issues to contend with.
I can only say that my husband was a good and kind man with many loving relatives and friends yet the DAs turned him into an unrecognisable, cruel man who behaved in a destructive way for years whilst on DAs.
It is good that you are reducing the drugs but my gut feeling is that only by coming off them completely will you be able to know how much they have contributed to your changed life and thoughts.
Getting my husband off them was like getting a junkie off heroin and he fought against it needing a month in hospital to cope with the mental and physical side effects of withdrawal.18 months on, he is a different man, kind and loving again with all compulsions gone.
You DO deserve the care and support of the health services but you have to decide for yourself if you will ask for and accept help.
If I had a religious belief I would pray that you do, but in my own way I will "pray" that you come through this and find happiness in the future.
Love
GG

#19
I beleive I may owe our Titan a massive apology..

Where do begin.

I was misdiagnosed in 2002 at age 35, daignosed 2003 aged 36 (strangly enough) was put on DA's in 2005, dont really know when exactly, Spring time I think. During the Summer of 2006 I experienced Catastrophicd Impulsive/Obsessive Compulsions.

When I had laid bare my experience along with several others, I felt vexed that titan was inferring that my behavoir was due to a predisposition to such behaviour. I took the huff and gave poor Titan both barrels most of which was deleted.

I have just watched a programm by jon richardson http://bit.ly/NReXiF

I shared a lot of the thins they spoke of in the program in my youth. Things like not walking on cracks. When I flushed the toilet, I had to make it downstairs before the flushing ended. Things like that. I had it down that I was supersticious. I have growen out of such antics a long long time ago. I never would have related it to OCD, but I'm now thinking it was OCD even if it was harmless and short lived.

So Titan (and others who I attacked). Maybe I am predisposd to being OCD. However I cannot say that I was ever a gambler, fisherman, used car buyer, boat owner, pc building punder, or any of a whole host of obnoxious behaviours that I did or threatend to do. Oh yes and I'm very sorry.

[Hangs head and swats his bare bottom with a leather studded slipper whilst saying "Thank you, may I have another"] (well I would have if a. I could reach; b. I posessed such an article c. It wasn't 1:05 am.) {Maybe I'll have a go as I've got yet more toothache and I need to take my mind off it}

#20
I botched that.

It should say that I was I/C/OCD from the summer of 2005 to Autum/Winter 2006.

I need to go to sleep but I'm OCD about typing a lot of keeche and putting the record straight before going to my kip. Where upon I shall beat myself to sleep.