I could get all deep and meaningful here and write :
‘If Parkinson’s were the cloud, the silver lining would be my friends’.
Which actually is true. However, if I started being ‘deep and meaningful’ now, after eleven (yes, eleven) months of waffle, you may well yawn and start reading a proper blog about the weather.
Much more ‘blog appropriate’ would be the phrase from the advertisement for liquid hops, slightly amended :
‘If Parkinson’s did clouds ….’.
If Parkinson’s did clouds, the weather would be very unpredictable. It may appear to be offering sunny weather, but could produce torrential rain, and vice versa. Handbag planning would be impossible with a PD cloud. Do I need my bag which will hold my umbrella. Can I get away with a fabric bag, stylish but would be ruined in a rainstorm. Alternatively do I need a sunhat and suncream. So many first world problems.
Yesterday, 21 November 2017, was five years since I was diagnosed, and the blog to mark this anniversary was going to be a resoundingly positive one – an annoying ‘high five’ blog.
Starting with the title ‘Every cloud has a silver lining’. The blog was going to say that although PD is rubbish, I would list all the things I have achieved over the past five years. But that would be like reading ‘Dave’, I have written lots about positivity and achievements.
However, the emotions I experienced on the five year anniversary were quite overwhelming.
Just a moment, stop head tilting. Before you read this blog, can I just say, I am fine now. To all my friends who helped me yesterday – thank you …
Yesterday, I cried. Five years is a landmark in PD terms. ‘They’ say ‘five good years’, and actually I wouldn’t go as far as saying ‘good’ but as I have said in previous posts they have certainly been a lot better than I thought they would be on diagnosis day
As I explained at the beginning, my initial feelings on diagnosis day were ‘relief’ that it had a name and someone believed me. The words ‘incurable’ and ‘degenerative’ I momentarily pushed to the back of my mind. I heard ‘managing the condition’, ‘medication to manage the symptoms’. My consultant also assured me that I would have lots of support.
The day after my diagnosis I went into organisational mode. Researching exercise classes, contacting my PD nurse, and generally making plans for my new life with PD. I immediately saw it as a challenge and one which I needed to take control of sooner rather than later.
However, I also:
- I walked up and down the stairs a lot. In those early days after diagnosis I was imagining never seeing the upstairs of a house again.
- Therefore, I started looking on the property pages for bungalows.
- I booked a big holiday thinking that would be my last opportunity.
- I thought that within a year I would be in a wheelchair.
However, today, I am relieved to say I would still be able to go on holiday to a twelfth floor holiday apartment in Benidorm
After five years, the only thing (and this is still not definite), I will have to stop is driving. When meds are managing the condition I am fine, but when they break through they are distracting. So the car is locked away in the garage at the moment.
So, back to yesterday, I cried about the past five years and the future. I rang the Samaritans. The wonderful lady who answered the phone was amazing, she just listened for nearly an hour.
Shut your eyes for a moment (not if you are driving or operating heavy machinery).
Imagine a world where you could :
- Get the best seats in the house at the theatre or music concert
- Have people offering to help you at every turn
- Have access to a huge toilet which rarely has a queue
- Travel for free (or hugely discounted), and you can often take a friend
- Are able to park almost anywhere free of charge for a long time
So the silver lining I see with PD :
Are my amazing friends – crickey I need you now more than ever. Obviously I am still here for you all – as long as you don’t need driving somewhere, help with carrying things, or in fact help with anything useful.
- Disabled seating areas at theatres/concerts
- The walking stick seems to be a beacon, people smile and offer help
- The radar key opens 10,000 huge disabled toilets
- I now have a disabled bus pass, where I and a friend travel for free, and a train pass where I and a friend can travel hugely discounted.
- The blue badge for parking
So the anniversary day itself was twaddle and not very happy. The anniversary eve however.
Who would have thought that on the eve of the five year diagnosis I would be at a massive rock concert, being directed past the long queue to get in, sitting in the best seats (the disabled platform), using a huge toilet with no queues, with staff offering to help at every turn.
PD is twaddle, we know that. If you have PD please make your life slightly less stressful by applying for the disabled badges/passes etc which will help you. I was reluctant to begin with, and for a tiny minute I thought I shouldn’t tell people as it was embarrassing. However, I am now embarrassed to tell people about the special treatment I get … well I wasn’t that embarrassed when watching the top band in the special seating.
I felt more like a VIP than a VDP
Onwards and upwards
PS : I have a feeling I may have inadvertently turned into Dave (the tv channel, not the bloke in the petrol station). I think I may have repeated myself from a previous blog. Ho hum.