White Rabbit

I have been trying to unravel the mystery of side-effects vs medication. I am sure that I'm not the only one who gets confused as to what is what. It is a hugely important topic because the balance between wellness and drugs needs to be clearly understood. without this understanding how can we make a personal judgement as to what we are prepared to tolerate. It is in this search that I decided to really closely scrutinise the effects of coming off an agonist. here I add my normal note of caution because obviously the phrase we are all individuals springs to mind however we do all share some commonalities and I think it is better to vocalise my findings than not. in doing so I also stress that what is important to me could be poles apart from the significance to your life full stop however I believe I have gained more than I have lost..

I was prompted to write this post this morning when a dear friend with Parkinson's said to me I'm always late and during my professional career I was never late in fact lateness used to really annoy me so now I annoying myself. This rang several bells with me as I too was a stickler for time keeping being a Colonel's Daughter and yet my time keeping collapsed, causing me at the time much distress. As to was my inability to keep tidy and the trail and devastation of clothes pens books paint fabric shoes and untold creative materials and sheer stuff got strewn around my home. Then the compulsive behaviours and obsessions such as table tennis, art, starting numerous projects and the more sinister habits which this blog is not about to tackle, all compounded. My friends commented 'you are so prolific you survive on such little sleep and yet you produce so much' in a very strange way they were complimenting me when in actual fact now I realise that all of these things should be warning bells.

Hours could slip by virtually unnoticed wasting time producing things that had no value and then throwing them away, any kind of productivity even creating garbage was important.

I would make appointments and then unmake them. Make arrangements and then constantly change them. I lived in a kind of fluidity that made time and space irrelevant and as such I became dysfunctional.

if this sounds a bit shocking or a bit extreme then yes it was it is and now i understand that this has been compounding for a long time. I accepted it I thought it was simply part of the disease and try to embrace this new me full stop it wasn't me that actually I didn't love I didn't like under me the Left Behind everything that I held important for so long that it was in fact alien.

what has changed now well everything and I cannot impress upon you more what a relief and overwhelming feeling it is to realise that all of that chaos actually was not me was never me and was indeed a drug that I was taking.

bold claims you may think how does she know you might ask how can she be so sure? I can only tell you the following:

I am no longer the White Rabbit checking my watch I am not late

I no longer make a mess I'm tidy

I have my sleep back

I have clarity and focus

I make appointments and I keep them

I make arrangements and I stick to them

I am more like the woman I used to be before I got Parkinson's than ever before

I cannot suggest that we all stop taking agonists because it is absolutely clear that they do work however for me having my personality and independent thinking back is worth more than the loss of my walking and rigidity which at some point was always going to change.

it has taken some courage to write this piece because it has to acknowledge that I went into some kind of meltdown which I am now publicly owning up to however I feel so strongly that we the people within this community need to truly wake up and recognise when we are changing and that those changes are not necessarily the disease but actually are influenced by what we take as Medical Solutions. please do not act on this article independently if some of what I say resonates with you then please go and seek professional medical support and speak to your loved ones.

genuinely yours,

CHH

19 Replies

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  • AQWLL SAID COLLEEN

    IT SI SO GOOD FO YOU TO POST THIS

    I H`AVE [PSP SO NO MEDS 2 TAKE FOR IT SO I JJSUT BLAME ALLL MY CHANGES OIN THE CONDITION

    UNFAIR I THINK BUT I WILL TR Y AND TAKE OWNERSHIP FO THE NEW ME AND CHANGE WHERE POSSIB LE

    LOL JILLL

    PSP PERSON IN THE UK

  • I wish you enormous luck with that. It's hard enough to have pd let alone battle a secondary mental challenge as a consequence of our treatment

    X

  • I took agonist for 9 years under the care of two DRs. I had compulsive problems for 6 years before i was put on Sinemat. My whole personality changed. I now am back to my old self. The sinemat does more than the agonist ever did. The sinemat has side affects also but different from the agonist. What i thought was PD turned out to be the meds. The side affects from sinemat are (for me ) are restless leg, uncontrolled movements and i believe insomnia. But they are few and far between. I can not function with out the meds. I can hardly walk or us my hands with out them. But when i am "on" you can not tell i have PD. Of course i exercise 5 or six days a week.

    I do crossfit. The reason i like crossfit is doing it with a group . It is grueling and i lay on the floor grasping for my breath but not for more than a minute or two. I love every minute of it.

    I got off subject there but i enjoy talking about crossfit.

    JUST BE AWARE OF CHANGES IN YOUR THOUGHTS OR ACTIONS.

    iF YOU ARE A CARE GIVER DO NOT WASTE TIME WHEN YOU SEE A CHANGE ACT AS FAST AS YOU CAN. CALL THE DR OR NURSE AND DON'T GIVE UP UNTIL THE PROBLEM IS ADDRESSED.

    "please do not act on this article independently if some of what I say resonates with you then please go and seek professional medical support and speak to your loved ones."

  • Baailey youstill take a agonist don't you?

  • No. I dangerously went cold turkey against all advice. I had to get what I regarded poison out of me. If it had been a lump I would have taken a knife. I would under no circumstances ever take them again. I am recovered but still haunted.

  • Do not anyone follow my example here, please. Speak up. Everything can get fixed.

  • yes 6 mg at night but with no problem

    and i know what to look for and so does my wife

  • Exactly my point / we are all different 😃

  • I too have had a nightmare with medication and local anaesthetics. Thank heavens I have a GP who has not lost the art of listening.

    Your post rings so true for me and elequently written, thank you :)

  • Thankyou. colleen for your honest and useful report.

    some questions if that's ok.

    DO you think these behaviours developed and became worse over time, so the longer on the med rather than any increased in dose - the more pronounced they were.

    Any. Comment about dose, do you think amount is significant ?

    THank's for opening this for discussion.

  • My experience was this. My dose never really changed, but in 2012/13 my stress level did. I went to live and care for my aging father who then died. It was a horrendous ordeal. Traumatic. With this massive chink in my armour my normal mental robustness, calm and relied upon judgement collapsed. My Neuro and Psychologist both totally agree and support that this was the case.

    To me that means we are all vulnerable. Hope that answers.

  • Thank you for your honesty and your words.

    Always a good read.

  • You write what I feel...I have BECOME the person I despise. What an internal battle others can't understand. Thanks 4 sharing & please continue daily readings for us!!

  • Oh that's so sad please find a way to improve things it is possible

  • The dilemma – I answered the following questions as honestly as I can

    Does Parkinson’s alter behaviours? - possibly

    Do agonists alter behaviours? – certainly

    Can I function to an acceptable level without Agonists? - doubtful

    Am I in control of my behaviour? – partially

    Have I done anything excessively risky, crazy or dangerous? – I don’t think so

    Have I done anything I wouldn’t want my mother to know about? – probably

    Am I concerned about dyskinesia if I increase levodopa meds to compensate for reduced agonists? – definitely

    Should I cut down on agonists? - …err

  • It's always a compromise and my statement regarding our values and experiences differing is ever more prominent.

    I took agonists for years and had no problems, I believe I am very mentally robust. But it only took one major stress for all that to go to pot. Albeit in my case probably the most emotionally devastating time of my life. What I'm hoping to get accross is please be careful. 😃

  • Thank you for posting this. :) In Nov. 2014 my partner decided to go off all prescription meds (including an agonist) and try a different approach. It was a long, hard transition and took nearly a year to figure out a plant-based medicinal approach but we're certainly in a better place today. He manages with a combination of Mucuna and supplements, combined with lots of exercise, dietary changes, acupuncture, yoga and massage.

    I'm so glad you wrote about your experience. I fear too often people take medication without realizing the severe toll it's taking... but of course, it's hard to know what to do. Going off the meds has been well worth it for Jay but it's a lot of experimentation to get things right and we're still always tweaking.

  • Hi Colleen..... I had DBS in April last year and am struggling getting some sort of balance. Prior to DBS I was on a large amount of medopar, entacapone and neuro patch. Having researched I believed a lot of my symptoms were meds overdose!! hence op. After op I managed to reduce Medopar by 1/3 (leaving me on 12 tabs) but still on the rest. 8 weeks ago I went for my Ldopa challenge (basically off all meds including patch from 8pm previous evening). I was on my Stimulator only. Unbelievable I got up the morning of my appointment, showered, dressed, walked up and down stairs at the hospital. By 12pm (16 hours after my last dose of meds) I was walking well, balance was brilliant, holding a conversation without stammering over words, and my head felt clearer than it had in ages, personality back and confidence!! Yes I have Parkinson's because I completely crumbled when they turned the machine off.

    Now here is my point.....I then had to take a dose of my meds.....back came all the symptoms I had felt clear of without meds. So conclusion is I have been totally over medicated causing more nasty side effects than the parkinsons. Unfortunately I have been trying to go cold turkey but cant cope. Just know some how I need to stop taking this medication!!!!!!

    So Colleen I whole heartedly agree with your statement "that those changes are not necessarily the disease but actually are influenced by what we take as Medical Solutions".

    Sorry that I have rambled on but like you feel so strongly about what these drugs are doing to me.

    Deb xx

  • Thank you for such a detailed and interesting account. I do hope things go well for you. Let me know won't you?

    Much respect

    Colleen

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