Hi,
Being a believer in the good that DA,s can do,especially for younger pwp wanting to delay taking Levadopa alternatives.Shouting from the rooftops about self control and will power,i now find myself looking down the DA discussion dividing line.Seeing a murky grey area that has people baffled as to which way to turn when starting medication.The tug of war reveals no victories if lessons are not learnt and honesty used,when realising things may not be as straightforward as first thought.
At the end of the day,the final decision on whether to accept,take,decline,or take note and control of this condition,is yours.The person with PD today is in a different place to those prescribed in the past.This forum gives insight through discussion which is invaluable when coping day to day with this illness.
It is through these sometimes heated discussions that realisation in the form of niggling doubts started to set in.Could i possibly be experiencing early warning signs of OCD through my love of horse racing.Venturing the possibility and swallowing a big chunk of humble pie,it was those very people i had been arguing with that came to the rescue.The advice confirming the suspicions i had that something was amiss.Self control and willpower cannot stop something that seeps into every pore,in such a subtle way.
I spoke to my Wife last night before this mornings appointment.She gave an honest account of the problems she could see.I wrote them down and presented them to the Neurologist(my Wife could not get time of work).I also presented my own view,worries and concerns.A copy of which goes in her(the Neuros)file each time i visit.Immediately she came to the conclusion that things had to be changed.She says i am very self aware and that she wished everyone would be as open and informative.Apparently,she has quite literally had to do all sorts to get people to attend appointments and secondly to be honest about everything they are experiencing.Even when their partners are concerned,they will sit there and say"i,m fine,nothing wrong".The discussion went deeper and i have got to say that my Neurologist is well clued up on OCD,s,the Parkinsons forum and the problems that occur on Da,s.
The end result for me is a reduction,halving of Mirapexin,the addition of Sinemet.Plus,not entirely unexpected,an anti-depressant.
I think it shows that with a maximum dose cap now in place,the important advice and help imparted on this forum, and an improved awareness in both Neurologist and pwp.People now in the same situation as myself can halt things before they escalate or spiral out of control.
It makes we realise just what people on here who were given high doses and often quick maximum administration of DA,s,including Ray,Blueeyes,Glenchass,Cutiepie,Goldengirl and Eck and others,must have gone through.
To those people ,i hope my account gives you hope in your campaign to increase awareness in all areas.To all those starting out and considering DA,s,they are good in the relief of symptoms and have been a godsend over this last year or more for me.However keep one eye open,heeding the warnings,as i am proof that problems do occur,but also that they can be realised early.There is also hope that things have moved forward and that with both increased Neurologist and pwp awareness,as in my case,catastrophic problems will hopefully become a thing of the past.
I apologise for rambling
Its been a weird old day.
All the best
Titan

Well done Titan, not an easy time for you, but your feedback is immensely useful to us all.

Obviously you are well read in the whole subject, and being monitored by wise aides. We mustn't forget, however, that many less aware patients are on their own out there with no-one to watch over them.

If, by chance, they are also patients of Neurologists who are not as on-the-ball as yours, there remains a major possibility of OCD-susceptible "victims" slipping through the net.

My other concern is the possibility that there may be no safe maximum dose, as everyone's threshold may be different. We don't want people to get a false sense of security, so we must get this message across.

Take care,

Ray.

Morning - just wanted to say to Titan well done for speaking out and being so humble.

I too have recently noticed compulsive tendencies and have been speaking these through with the Parkinsons Nurse. I have now got an appointment with Neurologist on 11th July with a view to altering my medication.

Take care
Lizzy x

I am becoming more and more convinced every day that all these figures (1%, 14%, 25% etc) are rubbish, and that reality is actuality 100%. It's merely a question of an individual's threshold. Give anyone enough of a DA and they will develop OCDs.

Titan you have my admiration, I am so pleased that you have taken the step to discuss your concerns with you neuro and that she is well educated regarding OCD behaviors. Oh how I wish other neuro's took the same professional responsibility to update themselves and listen to their patients. You are so lucky to have that resource.

I'm sure I speak for others when I say welcome to the cause!

Glenchass

Glenchass,
I completely back your cause in raising awareness.Alas you may despair of me,but could only see it as the logical action,and decision concerning my medication.
Having read the importance of delaying meds like sinemet etc,especially when young.The halving of my mirapexin combined with sinemet i have given great thought to.Having not halved my mirapexin for a full week and now in total realisation of how carried away i had become gambling.It seemed logical to test my theory that things can be realised before catastrophic consequences.Why lose my quality of life by going backwards in reduction of symptoms or increase further side effects and problems by introducing l,dopa.
My family are aware,i am aware and i have spoken to my Neurologist who has also spoken now to my Wife.So carry on as i was and be reviewed in 3 months.This may seem as contradictory to the views of those raising awareness, but why take away something which is doing good because of a hiccup,which has now been resolved.Hope this does not disappoint,the main reason for my becoming aware was the advice given here on raising awareness.However we all have control of our own lives/destinies and i am experimenting/chancing my theory that when having developed a problem in its fledgling stages,medication can remain the same and things can be turned around.
If failing then i will have to take the other route and introduce a medication i would want to delay for much longer.We shall see,but there is no harm in trying.Nothing ventured,nothing gained.
All the best
Titan

Hi Titan
as you said we all have control of our lives. And you have the love and support of your family to help you make the right decision. I wish you all the best.
Take care pb x

Hi Posh Bird,
Thanks for the support,i will strive to make things work out.Just want to point out that we are ultimately in charge and sometimes a doctors advise or treatment is not exactly what the doctor ordered, to put a confusing wording of it.For example,i was also prescribed citalopan.On reading the leaflet had my concerns,had them confirmed,and many thanks!,that it can be serious or sometimes fatal to take these with Azilect(Rasagaline).Yet the prescription went through three sets of hands before it got to me.
I think my Neurologist is brilliant and has allowed me that choice,she is keeping tabs on things whilst allowing for an element of choice by the patient.But sometimes i wonder if we really know the true extent of damage done by taking a combination of different medications.The effects may only be noticed many years down the road.
All the best
Titan,,,,,,,,,oh,have a good break away

God I wish everyone could have a Neuro as proactive, understanding and reliable as yours, Titan! Does she take on private patients in Hull?

Good luck to you fellah!

Ray.

Hi Ray,
Thanks for the good luck,means a lot.More important though is the fact that this should be the case across the board.It is all a matter of communication.
In my case she is taking a chance on my honesty,letting me carry on with something which quite obviously had started to have an impact on my life.
This honesty,along with Wife/Carer and family involvement is essential.May i add the important fact that i also have access to a pd nurse.

Should be as simple as this in all cases--This is what i did

1)Have a pd problem or issue which needs addressing

2)Access to contact or phone number of Neurologist secretary or pd nurse.I phoned the pd nurse,discussed my issues,was then put through to the secretary,,who did the same.She then sent info to my Neurologist ,who would contact me.

3)Most importantly SHE DID and just as important THE SAME DAY.

4)I suppose my honesty in admitting to having developed a problem swayed things.My Wife also had a long chat on the phone and safe guards are all in place.

Now i know that because off my discussions on this forum that i at least am clued in.I still think that everyone should have accessibility as i have.

It is also important to note that there are lots of pwp that don,t visit forums like this and are a lot more at risk than myself.
I believe that every pwp should be advised or even prompted as part of their ongoing care.To visit Parkinsons uk and other pd sites.This is a vital part of the awareness process.So people like you Ray can have hope that your message is getting through.
I have met some amazing people on this forum and it helps keep me sane,if i haden,t i could be a catastrophic case,maybe i am kidding myself for 3 months until further review, but rest assured notes will be taken along the way,by myself and others(they know who they are)who are watching over me as i fly against convention.
All the best,
Titan