I want to be useful and helpful but not to the point of my own discomfort each of us has our own demons to battle and there is a very fine balance in being informative but respecting your own self. but I feel but it is so important for me to take a positive step from what was a very destructive dangerous and difficult phase of my life with this illness. Parkinson's for me has never been a physical challenge it has overwhelmingly been a test of mental fortitude of which I thought I had an abundance. as usual with my posts I apply the usual caveat which is this can only reflect my experience my situation and my life however if you read this and see some of yourself in my words then perhaps you may choose to react. I'm not asking you to I'm not telling you to I'm simply saying this is a situation that I found myself in and thank goodness managed to survive.
obsession starts gently and quietly well it did for me and it was cloaked strangely and innocently and as such I didn't spot it neither did the people around me.
in fact my obsession became a positive outlet to the point where it seems almost inexplicable that's something so destructive actually did good. it first started with drawing and painting and all of a sudden some new found creativity everybody remarked she's using art to heal and to some degree it did. I started projects and encourage others even did fundraising and altruistic acts.
fuelled by the huge amount of time that I had because of lack of sleep I would obsessively draw paint create for hours and seemingly thrive on tiny amounts of rest rarely sleeping at all. this pattern continues for everything that I undertook I didn't do anything unless I did it 100 miles an hour to the exclusion of others and the neglect of myself and my home. I don't quite exaggerate when I say that buying paint became more important than Family.
when does obsession turn into addiction or is it addiction turns into obsession either way it isn't a character trait I used to have but it became dominant it became a monster gripping me and suffocating everything else out of my life. I didn't see it I couldn't see it I didn't see the damage I only started to realise that I was no longer in control when my obsessions stopped being paint and started being things which were far more serious and dark. It may be incomprehensible for me to think that anyone could believe that seemingly gentle art habit signalled the beginning of the darkest period of my life when I narrowly averted death but believe me I am not scare mongering.
I see all around me people painting prolifically people going to the gym for hours people getting multiple tattoos people doing what seems to be just life expression but I do wonder deep down and hope and pray that that is all they are, hobbies.
I no longer have any obsessions or addictions of any kind all this all stopped when I stop taking agonists. I'm free to Breathe Again I am free to fly on my own flight path I have my priorities back my family comes first. I can enjoy my creativity when I w brush but I can also put my paint brush down and walk away and leave it for days. I'm not really sure that my aim with this post has really been met but it is all that I am prepared to write about this topic.
It's Monday the start of a great week and I'm about to have beans on toast!
I am scrutinizing my activities because of your posts, and I can see where I am also totally onsessive.
With me it is the time and the with the intensity with which I I use computers. I spend a lot of time in front of the computer every day.
I go to sleep with my iPhone in my hand, and if I wake up in the middle of the night I checked all my emails and messages and read the news . I go back to sleep and reach for my iPhone when I wake up in the morning.
I would never have realized how intense I am with computers if it hadn't been for you sharing about your obsessions.
So please keep sharing, and I thank you.
Love and blessings upon Day from Eva G. Ps-and I sleep about 4 to 5 hours a night.
I have obsessions and I see many around me showing similar traits. And these are not the only behavioural side effects I noticed increasingly. My memory for words deserted me on Friday, when I was in a discussion with several family members, several times in mid sentence I had to look for help for the simple word I wanted to use, words I know and use regularly just wouldn't come to the fore when I needed them. Similarly, someone was explaining a slightly complex procedure to me and my wife, I found myself struggling to keep up. And telling myself that I would ask my wife later what was meant. I lose track of what is happening, where I am going on a certain day or what I agreed to do but forgot. I do not believe these to be parkinsons symptoms. I used to have a half decent brain that is turning to mush and when CHH talks of agonists and awful side effects I begin to wonder. How much further will this go? It is like a fog, an opaque mist that slows or incapacitated my intellect. Could it be that those little pills I take so often are contributing to my dumbing down? I am re evaluating my quality of life and my dependence on meds to try and find an answer.
It's a box of snakes, very hard to unravel and must be approached with caution. The word vanish I have experienced, yes and infront of many people. Not nice. It's all so personal and individual I think we just have to try and find objective ways of measuring. I'm using an app called Elevate. It won't tell me how I am compared with how I used to be, but I can use it to help me monitor from when I started 😃
HH, I enjoy your honest erudite posts very much. Thank you! I tried Mirapex one time. Took it in the morning and became so ill I ended up crawling on hands and knees back to bed. Doc said, don't take anymore. The more I hear from people about it the happier I am that I couldn't take it. What are you taking now?
Just Levadopa but it is a compromise as agonists do work in terms of mobility.
Erudite is a lovely word, my father used to use it. Thank you for reminding me of him. He was the best and so deeply missed.
Hi everyone, I don't have PD, but my dear late father did. Are you aware of the probable benefit to many PD, Alzheimer's and dementia patients of eating coconut oil , olive oil and the like? Please look it up online, I think you'll at least find it interesting. Hope it helps!
Thanks for your post! I was diagnosed with PD in 2000, I am now 58. Back in 2007 I was taking Requip and to make a very long story short, I developed a gambling habit, got into $100,00 debt, nearly lost my marriage and my mind! I had planned, get this, to leave home, take the train into NY city and live on the streets, or the gutter as I wrote in a note to my husband which I was going to leave him, believing that was what I deserved for what my addiction had caused. Thanks to God who stopped me at the last minute, which is a story i, itself! Sad but my neurologist thought I was nuts at the time to think it was the meds doing it cause it wasn't in their medical books. Thankfully today I am out of debt, still in my home and married 38 years to the same wonderful man. Again I must give God the praise! Thank you again for sharing, it helps to know you are not alone!!
My utter respect and thanks to you for this brave and amazing post. My story is very similar, I stood on a bridge ready to jump because of the devastation I had caused.
It has been a long tough road to recovery. I'm still picking up the pieces. My Neuro no longer prescribes DA's and now patients already on them are extremely closely monitored now. I hope I have helped to make their systems more water tight. I don't blame anyone there's no point. What's done is done. Thankfully my Husband is an incredible compassionate man. I said why are you still here, he replied because you are so worth saving.
I'm holding onto that and him.
My deepest thoughts go to you and sending all my very good wishes. Indeed we are not alone.
If you were taking Mirapex, obsessive compulsions are known to SOMETIMES be a side effect of the med. My husband had severe nausea from Mirapex so he could not take it long enough to find out if it caused compulsive behavior.
I couldn't take requip, it's the same difference an agonist is an agonist. I don't know the answer to your ' sometimes ' but my suspicion is that it definitely causes behavioural changes. It's then down to the ability of that person to handle it. I did for 11 years then following a series of devastating emotional pressures I was vulnerable and fell hard and fast. Thalidomide caused birth defects in babes, sometimes. That didn't make it ok. Drugs should not be a lottery, as you know the illness is enough. Sending my regards to you.
The reason I inserted "sometimes" is that criticism is often leveled at those who state their experience as the norm. Personally, I take heed when reading the experience of others and was very skeptial when the neuro prescribed Mirapex for spouse. Your analogy of thalidomide was excellent. Who wants to roll the dice on these dangerous meds?
I hope I am always responsible and I go to great lengths to try and impress that my personal experience can only be taken as one view point. However I am also not afraid to put my head up out of the parapet and state my genuine concerns.
Well, my post (s) are in total support of what you wrote. Your experience confirmed what I believe about mirapex in particular.
Thank you for opening your soul to us. I to had a similar experience . My ( I will call it anxiety induced dementia ) wasn't drug related , just anxiety driven. As someone who loves and studies Biblical end time eschatology I became consumed. Not only is a lot of prophecy being fulfilled right now but I know I was looking for a way out of Parkinson's. I drove my family crazy. I was so close to putting on a sandwich board and stand on the freeway. I alienated lots of family. I glad to be halfway sane now. Thanks for letting us in on a little insight.
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A killer dress
Learning Our Way Out of Parkinson's 
Me & Gladys Glover
