Into The Unknown With Parkinson's

Hello Friends!

It's been a while since I've been on Blogger.  I have decided to change tack and write about my Parkinson's journey {don't like using the word "journey" but it'll do for now} although it's more of a voyage into the unknown, like the Spanish Conquistadors and Christopher Columbus and all the other explorers who sallied forth into the great unknown.  Only they had a choice, I don't.

So, what is Parkinson's?  First things first. You may know it as Parkinson's Disease, but there is a move now to drop the word disease which gives the impression that it is contagious. It is not contagious, and it is now being known simply as Parkinson's.

Parkinson's is one of the fastest growing neurological conditions.  In the UK alone there are approximately 145,000 people diagnosed with this condition {around 83,000 men and 60,000 women between the ages of 50 to 89} and it is calculated that by the year 2050 there will be over 25 million cases worldwide.  It is more common amongst men than in women. It is progressive and debilitating, it robs you of being able to do the simplest of tasks, and there is no known cure, and it remains one of the most underfunded and under researched of medical conditions.  Try to imagine what it is like for your brain to be telling you to pick up that book but your arm and hand just will not comply and you hover above the book unable to grasp it.  Or when you are walking along, something that is automatic but all of a sudden your feet are rooted to the ground, your torso maintains momentum and over you go on your face.

It sneaks up on you and awareness of changes in your own body and discussing them with your GP it's about the only way of obtaining a diagnosis. There is no definitive test for Parkinson's, yet there are about forty different indications that can manifest years before the condition is suspected, never mind diagnosed.  Little things we might blow off as something else.

This is my story.

As many of you know I was a caregiver for my mother for several years. During this time, in 2015 I developed a frozen shoulder in my left arm. It was unexplained, I had no idea what was causing it, but because I was caring for my mother, I pushed my own medical needs aside to continue caring for her. Time passed and there was no ease to the frozen shoulder, but I pushed through the pain and mobility issues because I had to. Sometime in 2016 my left wrist started to hurt, and at that point I started to think perhaps I had a trapped nerve, or possibly arthritis. The pain was intermittent and became more of a minor inconvenience that I tolerated and ignored. Had I known that these two things were early symptoms of the onset of Parkinson's I would have probably gone to the doctor far earlier than I did. In 2017 the frozen shoulder finally started to ease but then I notice my little finger started twitching from time to time. Over the coming months the twitching started to spread until it was my whole hand from my wrist down. People were starting to notice, but still I refused to go to my doctor. My mother's condition deteriorated she went into hospital in early 2018 and from there she went into a care home. I was travelling for about eight hours a day, back and forth to visit and as a result didn't even give my tremors a second thought. She passed away in the autumn of that year and I focused on trying to rebuild my life by going back to work trying to pick up where I had left off 12 years earlier.  I had noticed I was getting slower, but I put that down to being older and less fit than I had been, and to my body's reaction to the cumulative stress of fourteen years of being a caregiver. I was incredibly tired and often found myself having to push hard to get through the day. It was winter and our bodies react differently, and I kept telling myself I'd get back on track properly after a winter of hibernation and self-care, then come the spring I would be able to start walking on a regular basis, regaining my former fitness. Of course, the next thing to happen before I had a chance to even think about putting myself back on track was the pandemic. We all know what that did for so many of us, no need to explain further that it knocked my intended recovery for six.  Of course, I know now there will be no recovery for it is incurable and progressive.

I muddled on, there was no improvement to my tremor but it wasn't getting any worse and I genuinely started to believe that it would heal itself eventually because nerve damage can take a while and there was no need to bother the doctor with something that would heal itself in the middle of the pandemic when appointments were conducted over the phone. However, in the summer of 2021, I noticed a tremor in my left leg. That was when I realised there was probably something that would require medical attention happening and I went to visit my GP. Everything was still very much about wearing your masks and keeping your distance, so off I went only to be told that he was very concerned and there was a high likelihood that I had Parkinson's.  He was thorough examining me and in questioning as any GP could do without being specifically qualified in neurological conditions. It seemed that so many things over the past four years or so were indicators. Sudden onset of an unexplained frozen shoulder being one of the major early indicators, even before tremors started to develop. The slowing down of movement and the increased tiredness, again both indicators. So I had evidence of four indicators and ignored them all through self-diagnosing. He sent a referral off to the local hospital and by the end of September I had been seen and officially diagnosed.

Since then, it's been like a roller coaster.  I will talk about my experiences over the coming weeks.  It won't be all about Parkinson's, there will be other stuff, but if you don't want to hang around, fair enough.  Thank you for being here this far.

In the meantime, please consider signing this petition to get better recognition, support and funding for research into this heinous condition.

Increase funding for people with Parkinson’s and implement the "Parky Charter" - Petitions

Until next time

Debbie xx