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

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

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

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

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 !!

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 ?!!!!!

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

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

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

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