This wasn’t intended to be a very long reflection, as I rarely share the impact of Parkinson’s as I don’t want it to define me. However, recently I allowed Parkinson’s to take over how I responded to a task during my shift at a wonderful organisation that I volunteer for.
I know I let this disease get one over me! So couldn’t help but reflect on it and see how I could manage it differently. I admit I over analyse things but self reflection can be helpful.
(I used to get my social work students to do this and they hated me for it, but they later reluctantly admitted it really did help develop their practice)
Whilst on my shift I needed to complete a hand written form which we rarely have to do, my hand writing was abysmal due to the Parkinson’s. I wanted to ensure that I provided the next volunteer with all the necessary information with hand writing to they could read to enable a quality follow up call.
I just couldn’t accept that my hand writing was so poor and kept trying to improve it, despite the Parkinson’s clearly not allowing this to happen no matter how hard I tried.
I can’t explain it, no matter how hard I try to do something, if the Parkinson’s is misbehaving then that particular movement will just not happen.
I’ve put the theory of mind over matter to the test, on numerous occasions, believe me if that was the case, this Rockett would have refuelled and launched a long time ago
For me, it literally means my arms go on ‘strike’ until the Parkinson’s decides to stop sulking and allow my hands, arms and legs to function again.
With being in a chair full time, the experience of being unable to push, especially when I live on my own is exceptionally frustrating . This can and does happen to me every day without any warning.
It can make doing things on my own potentially dangerous and the ability to be spontaneous almost impossible without the support of a willing friend.
I adore my friends however I do enjoy the freedom of doing some things on my own.
On reflection, I should have just accepted that whilst my hand writing was pants and messy, it did provide the necessary information and all I needed was to put the form in the file as required regardless of how it looked.
I know that I give a really good service and that my hand writing is not an indication of my skills and that it didn’t really matter what my hand writing was like, what really mattered was it was good enough to understand and provide a comprehensive summary.
Just because it looked very messy shouldn’t be a reason to keep re writing it when it was obvious my Parkinson’s was misbehaving and nothing would improve my handwriting.
Parkinson’s has no conscious, it cannot be reasoned with or put in the naughty corner until it accepts responsibility for its behaviour!!! 
After my third attempt to unsuccessfully write more clearly, I could have asked if my lovely shift partner would be kind enough to write it for me, I know she would willingly done this.
I confess, I absolutely hate not being able to do things that I could do before having Parkinson’s. I’ve had Spina Bifida since birth and always managed.
I always felt compelled to demonstrate that I am a confident, competent and capable disabled person who can be relied upon to do whatever is needed whatever the situation. I never allowed or thought of Spina Bifida as preventing me from accessing opportunities.
With having a disability since birth, I’ve have experienced lots of challenges through out my life, was just the way it was.
so fighting my corner was nothing new to me… It was certainly much harder to demonstrate my potential, when my disability was so obvious.
However, my Spina Bifida was consistent in relation to how it affected my mobility which made it easy to manage.
Even when I became a full time wheelchair user, this wasn’t as difficult to get accustomed too, as I’d been using a chair for my fencing and lots of my friends were much more independent than I was when using their chair
I was born in the 1960’s, a time when there was such low expectations of children with disabilities, we were not allowed in mainstream schools. (I know it’s hard to imagine now, it’s absolutely true). So it was a constant battle have the opportunity to to develop my full potential.
I knew that society didn’t really consider disabled children as being able to contribute much, therefore needed little investment.
This realisation whilst very frightening was also the catalyst to ensuring I gained an education (albeit it took me until I was 15 to be allowed into a main stream school) I took every opportunity given to me to get an education, have a wonderful career where I gained a reputation for demonstrating and teaching best practice
Later on in my career, I expected the same from my students and newly qualified social workers. I got married and became mother. I also experienced divorce 19 years later which is something that was the most heart breaking experience in my life and changed my life beyond recognition. Parkinson’s followed 3 years later, which forced further life changes.
I have held all these roles in my life, over the last 10 years these roles have been taken away and I have been determinedly holding onto the things I value in life, mainly my independence.
I’m working hard to accept it’s ok to do things in a different way.
By being stubborn on my shift and trying to hand write a form, prevented me from being as effective or as productive as I can be. In that I could have taken more calls from people that needed our service.
I also wasn’t really present for my shift partner as I became fixated on dong something the way it’s always done.
Providing peer support in our organisation is an essential component in keeping each other safe, grounded and sane!
In addition, my stubbornness also made my partner potentially late , which was utterly avoidable on my part
After all this reflection, I want to counter this experience by turning it into a positive one. Thus kicking back at Parkinson’s
I’ve reminded myself that whilst I cannot control how my body functions because of the Parkinson’s. I always have a choice in whether I allow Parkinson’s to control how I think and feel
Yes, Parkinson’s can and does control my movements which has a vast impact upon my ability to do things. This is so frustrating and at times it gets me very distressed and low. It’s important to be honest about this.
What I’m trying to do is remember I always have a choice in how I deal with things when I can’t control how my body reacts from hour to hour which now occurs every day
I’m trying not to let the Parkinson’s dictate how I get through my day. I’m also trying to learn from my frustrations and increasing limitations by accepting the alternative ways of thinking about having Parkinson’s.
I’m going to ask our directors about typing the form. In the past I’ve hated needing to do things differently because of my disability.
This is self defeating for as long as I’m carrying out a task that’s providing a good service, it doesn’t matter if something is hand written or typed. The quality of the information provided is the same.
Whilst I don’t have to like what’s happening to me, (that’s putting it politely, I hate this disease) I have needed to come to terms that there other ways of working, but in all honesty I am still struggling in accepting some of the changes in my life.
Getting used to my power chair is my biggest challenge, I absolutely loath it. It’s a necessary evil however, I want to regain my some form of independence back.
My recent shift has reinforced the recognition that whilst I can no longer continue to do so many things like I’ve always done. I do know there are alternative ways to do things I’m struggling with. To keep on trying to do things the way I have in the past is no longer working.
This is just a waste of energy and is having a real detrimental impact on my independence and that is something I value hugely.
A lovely friend of mine challenged me recently by asking if I truly valued Independence then why was I so unwilling to use the resources available, which would help me maintain as much independence as possible?
I’m going to work harder on accepting other ways of doing things, there’s still lots to embrace in my life, I just need to make realistic changes in how I approach things and in my expectations of myself.
For example I was initially absolutely devastated by deciding I needed to retire from social work because of the significant loss of mobility, insomnia and fatigue experienced with Parkinson’s.
I had to admit I could no longer consistently provide the high level of support I was known for. I knew that my professional integrity was something that I wasn’t willing to compromise.
I wasn’t ready to retire from a career where I’d worked so hard to build a reputation for developing best practice. I loved being the face for my organisation’s professional development. I had created a real sense of presence and everyone knew what my role was and how I could support their practice.
There was something very special about being responsible for providing a student social worker with an excellent placement which challenged and supported them to be part of a confident and compassionate workforce.
I loved the constant learning required in supporting the planning, design, delivery and management of professional development opportunities for social workers at all levels
Over time, I changed my thinking about this, in that retirement has afforded me the freedom and luxury of time to allow me to share my skills in other areas at a pace which I can control
I now apply my skills in a voluntary capacity as a listening volunteer, mentor and trainer for a well known listening service.
I’ll be honest this isn’t easy for me as I’ve worked hard all my life to be as independent as possible but I’m ready to acknowledge that my life has changed and I need to adapt to these changes.
Sorry for the essay but I hope by being honest about my experience with Parkinson’s it may help someone who is also struggling with their transition into a life they didn’t choose.
None of us chose to live with Parkinson’s, but we do have choices in how we live with it.
It’s not easy having to make choices we don’t want to make, it can be frustrating, even frightening having to even consider them. So remember to be kind to yourself when you’re not dealing with things as positively as you would like. You are only human and it’s ok not to feel ok, as long as you kick Parkinson’s ass on your good days.
Much love and hugs. Hope today is one of your good days.
Suzi x