119. Another Defining Moment

… 118 continued.
Now where was I… Okay the wheelchair arrived and it has been used a lot already. Admittedly not for it’s intended use when visiting hospital unmedicated.

Instead I am using it for scooting round the house when Dystonia hits. It actually saves quite a lot of ear damage aka swearing. So it is in the hall and, with the foot rests removed and brakes released, I can carefully (very carefully as i have to remember the brakes are not on and I don’t want to add ziperdeeedoodah to my repertoire) ease myself into the chair and scoot.

The dystonia is getting worse. As i have mentioned before this is a condition in it’s own right and some people (ie me) get the bonus of it going with Parkinson’s Whooperdee (nope enough of the whooping it is twaddle).

My feet twist and toes clench and walking is unbelievably difficult and almost impossible. Difficult to describe it looks awful, and I am asked if it hurts. The actually action of twisting doesn’t, in other words it doesn’t feel like hands are gripping my foot. But as the twisting starts to over twist that flaming hurts. Also my Achilles has started to join in the action and that flipping hurts as it feels like my foot is trying to snap itself. This also creeps into my legs and back and neck – no whooping no reason.

Now the rollator has arrived. This is taking some getting used to. It has reverse brakes, which are not literally what they say. Although the mechanically minded amongst you will say ‘doh its obvious’. It took a lot of research to find out What they are.

Basically they are brakes which are constantly on, ie the rollator constantly brakes. So if I leant on it it would not move. In order to make it move I have to squeeze the brakes on the handles. And if I let go it stops. Complicated … no … not as bad as rubbing my head and patting my stomach … but still takes some getting used to.

Now I have purchased this as a ‘shopping trolley’. The traditional types having ordinary brakes or none at all I felt they might be a hazard (although not having tested them I don’t know – I did buy a cheap one but that didn’t count). So the idea is that the rollator assists my walking after a busy day shopping and also carries my shopping for me in its basket. Like a metal/plastic person, without the need to buy it a thank you curly wurly afterwards.

So all is dandy (ish). However I haven’t had the courage to use the rollator out. Not that I’m going out much at all as we are still in the lull between storms that is the Corona Virus Pandemic (yup July 2020 and it’s still going on ).

So I have been out a couple of times but tbh it is scarey. I could do with using the rollator but … well I don’t know why ????

More another time.
Sorry it isn’t a jolly one.
but life isn’t atm tbh


118. Defining Moments Part 2 of gawd knows how many

To those of you who are new to the blog, and to those who have better things to remember. I think of life as a road trip, a journey is just plain boring, (unless it isn’t, obvs), beginning with a capital letter and ending with a full spot. However we do not rush uncontrollably towards the full stop (unless we do), our life is punctuated by commas, semi colons and colons. To generation z.2 I am talking about; smudged full stops, winkie smilie faces and staring eyes.

In an earlier blog post, a couple of years ago, I referred to these pauses as ‘defining moments’; such as receiving exam results, deciding on tea or gin, taking the left or right turn. These are points in our lives where the decision or action changes things. This could be for better or worse, richer or poorer (yes, that’s one of them), The way we think, act, do, and live our life. This could be good, bad, ugly, or smellie(?)

Applying for the blue disabled badge and buying my first walking stick were my defining moments then. Both involved admitting the effect PD was having on my life and coming to terms with the word ‘disabled’.

Today my mindset has changed, The blue badge and walking stick actually enable rather than disable me. Unless I accidently trip myself up with my diamante (really) walking stick, after parking in a disabled bay outside the wrong theatre.

Today I take my walking stick everywhere, it is a fashion accessory, as well as a walking aid. In the same way as my handbag is, but isn’t. I actually take pride in my walking stick.

Particularly impressive are my folding walking sticks which I ‘whip out’ in a silent Mary Poppins type way. Producing the walking stick from a small handbag, unannounced in a packed pub, the stick unfurls automatically, de-don-king (technical term) into shape. My diamanté one is pure class (well pure plastic to be precise). My, yet to be aired, light up one … ooooh … that could well be unbelievably extraordinary. Plus the other walking sticks; the ‘spotty dog’, ‘looks like bark’, ‘pink shiny’ and so on and so forth.

At time of writing it is June 2020 in the Covid 19 aka Corona Virus pandemic and I have been in lock down since 29 February. Only recently on the advice of ‘The men off the tellie’ and my neurologist I have started to venture out. Four extremely brief walks, not even to the end of the road, are all that I have managed so far.

An aside … During lockdown fitness is becoming a real issue. Legs are an obvious problem, lack of walking due to shielding obviously has an affect on muscle and stamina. However, arms are also a problem. Hours spent making jewellery, knitting, on the computer, and my arms are sometimes stuck (almost literally) in a ‘Tyrannasaurius Rex short armed dinosaur’ position (this will have split the readership … ). Shoulders ache and arms have lost strength.

I purchased melamine plates to save my china as PD makes me accident prone and I have ceramic floor tiles everywhere. However, I have now even found that when I do lift a china plate my muscles ache … flipperty flop.

Everybody loses stamina and strength with lack of movement and excercise and it takes hard work and dedication to build that up again, but it can be done.

Disclaimer – this is one of those paragraphs where a little pseudo knowledge is a dangerous thing … this is what I think/understand, but it might be wrong …. please check with a medical professional. Also, please check with a medical professional before altering or starting any exercise or new regimes.

However, when people with Parkinson’s (if I understand it correctly) lose strength, stamina and muscle, we not only have an uphill struggle of exercising to try and get back to fitness. We often also might have the problem of our brain forgetting how to do things – ‘use it or lose it’. So we will not only need to rebuild fitness but also rewire/retrain our brain. (If this is incorrect I apologise, if you are revising for your ‘upper class, double back flip post lateral degree in clever stuff’ do not (that’s ‘do not’) use this as a text book, ‘cos it ain’t’).

But it does sometimes feel like I need to retrain my legs. Needing to force my knees up in what feels like (to me) a weird odd walking movement, but to the on looker is apparently ‘just me walking. Apparently I usually walk with ‘silly shuffley steps’. So the big steps feel forced to me but are actually correct. I need to train myself to walk Big, as PD has made me walk Small…. clear as…

My confidence and fitness are rock bottom.

Never one to let the grass grow under my feet (unless it is), I am researching shopping trollies, beepie buttons and wheelchairs.

Three defining moments.

1. Wheelchair … no I am not (at time of writing, 2143 on a wet Wednesday in July) wheelchair bound. However it would be useful to have my own wheelchair on things like hospital visits, if my walking is completely awful. It saves struggling the one hundred mile hike round the Hospital corridors looking for a spare chair, or stumbling to the appointment by foot and walking stick.

So after extensive, and I mean REALLY extensive research .. some might say obsessively ‘really extensive’ research … a wheelchair has been purchased … my criteria was (yours may differ) …

Obvious colour so that it looks different to hospital ones, but not pink obvs – So no one as an excuse for not pushing it. Orange one purchased ….

Braking system … brakes essential (not all have brakes – ridiculous) … attendant (ie pusher) brakes, ‘slow down and parking brakes’. Also brake handles on wheels so that PIW (person in wheelchair) doesn’t have to yell ‘oi I’m over ‘ere’ when left stranded. They can ‘simply’ undo the parking brake themselves and be free-heeee.

Light, but not too light, It has to be stable.

Solid tyres, non burstable, hopefully. Might not be as comfortable as pump up tyres but then it is only a short trip chair and a puncture would be a ‘pain in the tyre’.

Fold down seat back – for collapsing smaller.

Oh yes it must be fold up – easy action with no screws.

Seatbelt for dodgy driving safety.

Filled in side arms (I know what I mean), so that my ‘essential toot’ can be gathered round me when being transported.

Easily put-on-able foot rests. Making the wheelchair lighter to lift when taken off. But I also have the option of using them – again must be easy to put on and off and flip up out of the way for ease of getting in and out.

‘It’ arrived today.

With slightly, some may say, over hysterical excitedness, I released it from it’s box (wearing rubber gloves – the 2020 rigor when receiving post to attempt to prevent virus transmission). Followed by a good handwash.

The wise ish man and I today spent a merry jaunt pushing each other the 2 feet up and down hall both in a dodgy PD state – entertaining in these lockdown days.

So far ‘happy’ with the purchase … it means also in these corona days that we will have our own wheelchair with our own dirt on it and we can (hopefully) be a bit self sufficient when pootling. round the hospital. Unless we both need to use it at the same time… an arm wrestle will have to be the decider.

So I own a wheelchair, whooperdeedooh – bet you’re well jel.

Okay i think that is enough information for one evening …. crickey I either rain or pour.

Rollator ordered

Beepie button forms being posted

I am now dairy, lactose, gluten, wheat, oat, barley, fruit juice, sugars intoler’flipping’ant.

I am not particularly ‘appy

But I am here

I am me

I am




Ger on with it

Live your life

Enjoy it