Living With Parkinson's


    ”You never know how strong you are until being strong is your only choice.”  – Bob Marley. 

      Oh boy! Yesterday, I took a walk around a small lake. I stopped for little breaks and my pace was gentle. Yet, by the time we arrived home, my body was cramping as dystonia kicked into action.  Dystonia is a symptom of Parkinson’s, in my case. It makes me contort in either small or very significant ways, as my muscles increase in rigidity, tension, pain, spasms and just major discomfort. Yesterday after my walk, which I managed well, the initial impact was in my whole right side, my feet, both hands and centred on the right side of my neck.

      Upon arriving home, I literally had to go to bed for an hour to rest and recover. For a while, that helped. By evening, the pain was becoming significantly worse. I knew it was going to be bad.  After my evening meal, I watched tv and continued my usual meds regime, with a top up of my levodopa (Madopar) and a paracetamol or two. I was getting by. I went to bed just after midnight. I was asleep just before my usual sleep time of 3am. At 5.30am, I awoke in agony. Complete right side rigidity and pain that was off the scale.


      I managed, somehow to drag myself out of bed and downstairs to our kitchen. I took my meds plus a Tramadol for extra pain relief. I had to keep my body moving to ease the pain; stretching, contorting, bending, sitting, standing etc. I chuckled, through my pain as I just thought how ridiculous it must look. There have also been a few unavoidable, momentary tears of agony. It seemed to only be getting worse.

       It is now 7.15am, as I write this. My right side, especially shoulder, arm, neck and head, feel as though they’ve been punched repeatedly. The efficacy of the Tranadol is poor. I’m barely noticing any benefit from it.  I can’t lay in bed. I have to keep moving into new positions to stretch and both reactively and proactively contort myself to a position that relieves or combats the dystonia. It is utterly exhausting.  The same state of reactivity and proactivity exist in my thoughts. This ranges from ‘I can’t take this pain any more, just let me die’ (not really die – but just that’s what you say when you feel horrible) through to ‘Come on, bring it on. You can’t break me. I will not be beaten.’  I guess that’s the ‘fight or flight’ anxiety response.

       I’m typing this post on my phone. It’s not at all easy and has required much editing of typos! It serves to aid me as a distraction. Focusing my mind on something other than my pain. I have to stop repeatedly, to contort or stretch or simply to lay on the floor.

      In the next hour, I will probably get the symptoms under control. I will then nap for an hour and, all going well, I will wake up in less agonising discomfort.  So…a nice afternoon walk has, like all activities I can achieve, resulted in a cost. The cost is borne out in worsened symptoms, severe pain, dystonia, increased anxiety, stress and exhaustion.  This is what it is like, for me, to have Parkinson’s. You do what you can to enjoy your life and to achieve tasks and pursuits, but you also get the almighty kick that follows activity.

      Symptoms usually begin in Parkinson’s, when we are at rest. So, many people stay as active as possible but then when you rest after activity, the symptoms come back with a vengeance. While you cope through those symptoms, you lose great chunks of your day, for all you can do is ride it out and then sleep.        I find this frustrating, for then all that I had planned to do has to be postponed. Then postponed again. That may involve letting someone down.

      The symptoms are easing now, at 7.45am. That’s been almost 2 hours just to wait for the Tramadol to work.  Now, begins recovery. That will require sleep, shortly. I’m get up again at about 10am and should hopefully be considerably better but I’ll be back to my usual tired state!

      In spite of this type of experience, even in the knowledge that this will only get worse as the disease progresses, I remain an optimist. I enjoy what I do in life and so I come through these difficulties by looking at my day in parts. I may have to get through several hellish hours to enjoy the following several lovely hours, but I focus on those lovely hours and, while in pain, keep my mind occupied by focusing on how I will make good use of that time; to achieve my tasks and gain fulfilment.  

      This dystonia symptom is very common for me, following an activity; especially if it is something that I do not do regularly.  It need not be about sport, walking or a physical activity that is energetic, it can happen after sitting in a place where the seating furniture, not being my own and therefore not what I’m used to, causes dystonia to trigger.  It can be when I’ve had social time for more than a couple of hours of chatting and engaging with people.  It can be after a car journey of more than about 40 minutes. So, please do not be overly concerned.  It is just something that I have rarely told anyone about but I decided that today I would write about it.  I am used to this and it is just something that is part of my Parkinson’s.  

     Today, I will be meeting my friend, Tracy, to record some videos for our project called ‘Focused Friends‘ and this evening, Kevin and I will be hosting our lovely neighbours for a glass of wine and a catch up.  Bad times are followed by good times.

(c) Deano Parsons. 2020.

3 replies »

  1. Hi Casey, It can be bad. Thankfully it has eased a lot since i wrote this earlier. I hope you are keeping well. Thanks for taking the time to comment. It’s always good to hear from readers. Best wishes, Deano.

  2. Hi Christy, Thank you for taking the time to read my article and for commenting. I see you accessed my article from within Parkinson’s Road group, on Facebook. I’m sorry you have to suffer the bad days of Parkinson’s, too. It’s okay to cry. Sometimes that is needed. What I note is your healthy ‘one day at a time’ approach. You’ve done well to adapt. Disease progression is as inevitable as ageing and so yes, we must all pull together and be supportive in the absence of a cure. I wish you well for each new day. Though life is set to get more challenging, I see evidence that we get stronger and more robust, too. Don’t lose sight of that. Best wishes, Deano. x

  3. Hi Casey, Thanks for taking the time to read and comment. Indeed, the bad days are bad, but they pass, for now, and good days still return. I hope you still find the same. Best wishes, Deano.

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