Posted - 08 Jun 2012 10:46
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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.
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