128. This is getting difficult(er)

I started this blog way back in January 2017. I started Parkinson’s way before that, but the ‘official’ documented date was November 2012. Now into my ninth year of living with this ‘condition’ life is, inevitably, getting difficult(er).

When diagnosed I immediately walked up and down the stairs a lot and planned a super long haul holiday. I arranged a New Year’s Eve party and booked a weekend away for my pre Christmas 45th birthday. I contacted Parkinson’s UK and rang the local Pilates teacher about rehab for PD ‘sufferers’.

When I say ‘immediately’ I obviously don’t mean in the car on the way back from the hospital. I saved those jobs until the next day.

‘Immediately’ I told the children and rang everyone I knew (my criteria was friends/relatives who I could ring and just say ‘its me’ and they knew my voice so well they didn’t need explanation). (Again, when I say ‘immediately’ I mean when I got home). All knew I had a Neurology appointment. I just rang and said ‘Hi I’ve got Parkinson’s Disease’. It was literally (almost) as quick as that. In hindsight, a little cruel, but I thought I could tell everyone and move on and get on with my life.

My life I knew would never be the same, but at least I had a diagnosis. Despite being told by my Nurse that ‘I wasn’t ill, I had a condition which could be managed’, I immediately had a wake up call. Not that I had been slacking up until that point, but the thoughts of becoming a Dalek over the coming months led to me enjoying the stairs whilst I could.

Over the next five years life continued. I was told that with PD I would have ‘five good years’ and I didn’t turn into a dalek in those first twelve months. The world continued to turn. My symptoms were annoying, gradually interfering more and more with my (and my friends and family’s) lives. There is definitely more than one victim. Difficult for me but difficult(er) for those around me as new symptoms slowly emerged.

Some friends disappeared subtly, some in a flurry. New friends appeared and some acquaintances became wonderful friends. Life was changing slowly and subtly,

I started the blog in January 2017 because for some reason I felt the need for a project. With mixed encouragement I started the blog, invented the word Parkinality and showed it to a local theatrical genius who I held in high regard who really liked it. The rest, as ‘they’ say (whoever ‘they’ are), is history.

I won’t bother writing anymore background. You can go back and read the ‘first five years’, all written as tidy, organised, humorous, in hindsight, essays. When does an upsetting incident turn into a humorous anecdote? I found them easy to write and got a good reaction from everyone. Which in hindsight wasn’t ‘everyone’. I quickly realised those that liked it commented to me; those that didn’t kept quiet … their mothers obviously having told them ‘if you can’t say anything nice, then don’t say anything at all’.

Then the blog went a bit feral … grew a beard (along with my hormonal, menopausal self) and PD symptoms started getting more demanding and interfering.

I now realised the first five years were a doddle ….

Well, maybe not a ‘doddle’, but certainly ‘a walk in the park’ literally having completed annually a sponsored walk to raise money for Parkinson’s UK, one of which was at Chatsworth over 10 miles …

So life continued. I continued managing the condition but, try as I might, I couldn’t stop the roller coaster that is Parkinson’s. I could ‘manage’ quite well, having taken up piano, jogging, tennis, and many other, in hindsight, annoyingly positive new projects and achievements. I say ‘annoyingly’ because those who were further advanced never commented but may well have thought …. make the most of it …. and I am ‘happy’ that I did. I can honestly say I have no regrets (apart from having Parkinson’s, obviously).

On diagnosis that same nurse said ‘I was the same person I was the day before being diagnosed’. Young Onset Parkinson’s (diagnosed before fifty) is, in the main, slow progressing. Five years after being diagnosed ‘I was still the same person, but more knowledgeable, more determined and more focussed ….’. Parkinson’s had become an irreversible, inrefrutable part of my life. I no longer got the odd half day of respite. generally it was there constantly, never giving me a break…. it had become part of me.

Hence Parkinality – Parkin(son’s) (person)ality, it had become part of me. People with Parkinson’s are all different, and all see it differently. Some might say it is not part of them it is an interloper which follows them. Some never accept it, some fight it, some try and ignore it. I have ebbed and flowed through many feelings, however in the main, tried to make allowances, whilst trying to control it.

Parkinson’s is constantly trying to get the upper hand and take control. In the early days, much like a baby, it was relatively easy to be in control and be the grown up. However over time things changed. I changed and Parkinson’s changed. I constantly try to stay several steps ahead, however as PD is getting faster and more agile, I am becoming tired and slower.

After all that deep meaningful stuff I will let you have a snack and warm drink … then I will write again. It is important I refer occasionally back to the reasons for writing the blog. It is not a place for waffle and twaddle (apart from when it is). I feel a responsibility to inform and tell honestly my experiences. This blog is open to public viewing, is shared and subscribed to. I certainly don’t want to misinform, underinform, scare or put a gloss on this crubbish disease.

I write honestly. The next blog will cut much of the twaddle but will honestly tell how things are now. Those that don’t wish to read, its fine to put your hands over your eyes. I often feel the need to write humorously so as not to upset people, but that is a tad silly and to be honest, at nine years is becoming impossible. You are, after all, reading a blog about a (currently) incurable degenerative neurological disease. Expect to be informed, upset, and hungry. It is not a laugh a minute … more a giggle every four days and a Belly laugh the first Thursday in the month,

To be continued