I started this Blog soon after I was diagnosed with Parkinson’s on 15/12/2020. It had been a difficult year with lockdown, a personal tragedy and then the diagnosis.
I needed to process what was happening to me and also wanted to try to help others through sharing my experiences along the way. My thoughts and feelings on living with Parkinson’s and what it means to me. I sometimes share poetry on this Blog, which may or may not have anything to do with Parkies. It is just something I have always done and for some reason in the last year or so, I find my poetry has become quite prolific and easier to write.
This is a forum too, that I hope people can access to comment on my writing and the topics therein. I want it to be a safe space for me to open up about what is happening to me and for others to comment if they wish to. I do enjoy hearing from people who follow me, it is so nice to get some feedback on the things that I share.
I have been pretty much an open book, letting people into my life, both as an individual with Parkinson’s and someone working in health. But, I also need to try to be careful and respectful of those I associate with in my professional life. I often reflect on how my ‘condition’ might reflect my practice at work and how my practice at work can affect me as a person with Parkinson’s.
So, I share a lot of myself and hope that makes this Blog accessible and real.
I was asked recently for a contact via email from someone following this Blog. I do want to be accessible to people as much as I can, so I have now added an email address to this Blog. That way, if people wish to send me an email regarding this Blog, they can do so. I must stress, however, that my response to any email sent to me is a response of a person with Parkinson’s and I cannot give advice in my professional capacity as a Social Worker. Those two parts of my life must be – and continue to be – as separate as possible.
I was asked recently for a contact via email from someone following this Blog. I did think about adding an email to this Blog and even set one up, but after some thought, I decided I prefer for people to contact me via the Blog itself.
My journey with Parkinsons 
I think the toughest part of chronic, debilitating illness (for me) is feeling unproductive. I fought to become employable only to be unemployed. It’s emotionally erosive. Unbelievably hurtful.
LikeLike
Absolutely agree. It is important for all of us, whether we have Parkinson’s or not, to be thought of as having value. More especially once we are diagnosed, though having that taken away from us can be soul destroying. But remember, you are special and unique and you are not defined by your condition or disability, you still have value!
LikeLike
I have Ehlers Danlos and live alone. So it’s been 15 years of surgeries, therapy,
LikeLike
Thanks for responding. I’m Ehlers Danlos but a more severe variant. Lots of surgeries and meds but I am alone. No friends and distant family. No kids as the disease rendered me infertile. Just me and the dogs and a gazillion diagnosis to juggle.
LikeLike
Hi Nik. I hadn’t heard of your condition previously, but it sounds like life is very challenging for you. Is there a support group of some sort you can tap into? Do you have access to counseling and any formal support systems? We all need a support system and I hope you are able to find one to support you.
LikeLike