Before I start this blog I need to say something about the last blog. Blog 19 is the first blog I have published which I haven’t been happy with.
Firstly, apologies for making you even think about novelty records, let alone attempting to do a routine.
Secondly, as you know I started this blog in January 2017, four and a half years after diagnosis. If I went straight onto blogging about PD today, without giving some background, it could be quite confusing.
So the background is needed so that the present day makes sense.
- For example:
- ‘I won Wimbledon today, and you didn’t even know I played BLANK’
- (sorry, I couldn’t resist another gameshow reference – it is obviously tennis).
- For the record : ‘I didn’t and I do’.
Blog 19 is how I was in June 2016, however PD has progressed so it is not accurate for today. It frustrated me when I was writing it, but I needed to describe the build up to my running.
I have nearly finished all the background blogs. This next blog 20 is about now, April 2017.
On with the blog : ‘Defining moments’
Warning, I go a bit off piste with the next bit, waffling about my life-punctuation theories. If you don’t like waffle (firstly well done getting to blog 20), please jump half a page when I get ‘back to the point’.
We are all on a road trip (sounds much more exciting than a journey). I think of life as a book about that road trip. We are born as a capital letter and end at the full stop. However, we don’t run headlong to the end, we twist and turn along the way.
Life is punctuated by defining moments, events which require a change of direction, they can be happy or sad, expected or unexpected. Even if the defining moment is negative, e.g. failing exams, it is still a crossroads that requires action.
I think defining moments are punctuated by commas and semi colons (are you keeping up – there is no prize at the end).
- Commas, I see as a brief pause before a change of direction.
- Semi Colons, I see as a longer considered pause before a change of direction.
Personally, I tend not to use the semi colon very often. Admittedly I am not sure where to use it. I rarely use it in life as I am too impatient, and would rather use a quick ‘comma’, than a considered ‘semi colon’.
Thankfully the semi colon has reinvented itself as the wsf*, it has never been so busy. *wsf – winkie smilie face.
Back to the point :
As I have said in many blogs it is my walking that is causing the most problems when meds switch off.
Recently, however PD has been stopping my walking in a new way, which is when my feet are almost completely stuck. To the point that I try and propel myself forward, my body moves but my feet don’t.
The new walking problems had started to make me reticent about going out. So immediately I have sprung into action. I have :
- Contacted a PD nurse and asked for advice.
- Discussed with my family.
- Talked through with the Dagenham Dancers.
- Researched ways to take back control.
- Updated the ‘panic plan’* on the fridge (first point is ‘don’t panic).
- Got emergency medication – which should work quickly if I get stuck.
- Purchased a walking stick.
- Got a Blue Disability Badge.
*panic plan : first point is ‘don’t panic’. This is on the fridge with friends telephone numbers, advice, music playlist and top tips. This is for me and my family if things go pear shaped.
This constant change in my symptoms and impact on my life is PD attempting to disable me by taking away not only my control, but also my ability.
So I see this as a defining moment, it has made me take action and has introduced some new words : Disability, Blue Badge, Walking Stick
- The Blue Badge
The first time I associated myself with the word disability is when it was suggested that I apply for a Blue Badge.
I mentioned it to my medical professionals, and rather than saying ‘you’re not disabled’, they thought it was a good idea. Now, this was a new one, they didn’t bat an eyelid when I mentioned a disabled blue badge.
The first challenge was completing the online application form.
Now, as you will know if you have been paying attention, PD doesn’t tick boxes, it doesn’t conform. How was I meant to squeeze all of the information about the randomness of PD into the tiny boxes on the form.
For example, ‘How far can you walk ….?’ That needed an essay. It is not an exact science, every question needed the answer starting, ‘it depends…’.
The council said I should print off a form and add some accompanying information. So they received quite a pack of information, a couple of essays describing some scenarios where my walking was difficult and changed quickly, with meds switching on and off.
I also needed a passport photograph, which had to be countersigned by the library. I obviously picked an ‘on’ time with the meds to go to the library. I felt a bit odd getting them to sign a disability form when I looked so well. I didn’t look disabled. However, if I had waited until meds weren’t working, I would have found it difficult to get there. I don’t think the librarian even noticed, she checked it was me and signed the photographs – she probably noticed my grey roots more than my apparent lack of disability.
Forms completed, photographs authorised. All I had to do was post it.
I kept putting off posting it, which was ridiculous. The envelope was waiting to be posted and the post box was only over the road.
However, when meds were working and walking was okay, I didn’t go and post it, as I thought ‘I don’t need it’. However, when I was really struggling and could hardly walk, ironically, I couldn’t get over the road to post it. Finally I sent someone else over the road to post it.
The Blue Badge arrived, and I did cry. After all it wasn’t a club I was keen to be a member of.
The nature of PD is so changeable. It means I can park outside places and not worry about whether my meds will hold out.
So I must think of the Blue Badge, as an enabler. It enables me to park outside places and nearer the entrance to places.
- The Walking Stick
On Saturday I went to the local mobility store (I didn’t even know we had one), and purchased a walking stick, which was really an emotional moment. It wasn’t top of my shopping list.
Two ways of thinking about it :
- ‘Poor thing, now a walking stick’, sympathy, tilting head, touching arm (just bring your own frozen peas).
- ‘Great, she’s doing something about it, and has purchased something to help her, which happens to be purple’.
The walking stick has really helped:
- I can lean on it.
- Clonk it along next to me to give a beat.
- Kick it to start momentum.
- People’s attitude towards me changes slightly when they see the stick.
Honestly, it is not just an excuse for another shopping opportunity (but there are so many genres, designs, colours).
So the word Disability is now associated with me in an official capacity. This is definitely a defining moment.
But rather than making me feel disabled, the Blue Badge and Walking Stick enable me (sorry that is a bit ‘head tilty’).
If it is the difference between doing things, and not doing things. I’d rather be out with a walking stick, parking close to the venue. Than staying at home because walking is difficult and I can’t park.
Life is all about balance so I purchased the walking stick and a bass guitar in the same week.