Parkinson’s Awareness Week in the UK – #incontrol – Day 3 – come walk with me

View from my perch :-)
View from my perch 🙂

The sun is out, the sky is blue, there is a light breeze and it looks just perfect for a walk outside.

BP (Before Parkinson’s) life was busy and active and while my dog was alive, we’d be off and out for a walk two/three times a day in a matter of moments.

AP (After Parkinson’s) things are very different and this is what I do:

BEFORE GOING OUT

1. Adjust my intake of food/liquids for some hours before leaving to make sure that “tanks are empty” if I am to be away from home and my bathroom for an hour or more as I have to manage a complex of gastro/bladder issues due in part to parkinson’s.  No, you don’t need to know the details (suffice to say pain and other problems often keep me indoors)!

2. Make sure medication effects are optimal.  Parkinson’s meds operate on a Bell curve – slow to take effect, building up to optimal and then wearing off.   Wearing off doesn’t just have an effect on mobility but also on one’s ability to process speech, visual cues and can make one appear horribly incompetent and outdoors that makes me feel very vulnerable.

3. Put on thick soled boots/shoes to reduce the vibration from pavements and to prevent my feet from dropping. Vibration just makes my legs hurt more and solidifies muscles so anything to reduce this means I can stay out longer. If I want to wear normal shoes, then I have to reduce my walking to a minimum and really concentrate on not tripping.  My walking socks are my own handiwork and super-comfy.

4. Plan what clothes to wear – autonomic dysfunction means my temperature can fluctuate wildly – wearing the right layers can help.

5. Allow plenty of time to get ready – all aspects of clothes and shoes require focus!

6. Plan precisely where I am going and how I am getting there – try to think of all that might go wrong and by doing so reduce unexpected stressors.

WHILE OUT

1. Try to walk upright – problems with proprioception mean I no longer know where my feet are, I rely on instinct and keen observation of the ground ahead, this can mean I end up walking head-down and leaning forward if I don’t concentrate on not doing so. Walking feels like wading through deep water, so I tire quickly. When I am tired, I lean more on my cane, so I have to try and avoid that too.

2. Try to walk evenly – I use the lines between paving stones as markers and aim to make good strides to avoid “parkinson shuffle”. I hum or count to myself to keep the pace going. The slightest distraction can divert me from this, so don’t ask me to walk and talk. My cane acts as a trigger to keep me walking although loss of concentration and tiredness can mean that I don’t always move it adequately.

3. Allow plenty of time to cross the road. Automated crossings are a nightmare as their timers always click off too soon for me. Zebra crossings are brilliant and drivers mostly very courteous. Where there is no crossing, I feel very vulnerable (unless there is an island, dividing two lanes). Vehicles have to be a long way away before I feel safe to attempt a crossing.

4. Look, look again, look a third time in each direction before crossing a road – a quick glance can mean I miss a potential hazard. The outside world is so full of objects – moving and stationary – noise, colours and bustle, that it is very easy to be distracted. As I can overbalance if I turn too quickly, I mustn’t be hasty when checking traffic.

5. Walk in harmony with others on the pavement – I never want to be one of those who think they have the right of way because they have walking difficulties.

6. Try not to be so bound up in my world that I miss opportunities for appropriate interaction with others, e.g., a sympathetic smile to a mum struggling with a fractious toddler, a wave across the road to a familiar face, but remember not to turn too quickly – an over-balance or near-fall is not a good look!

7. Try and avoid tripping up or bumping into things – I need so much concentration to keep the walking going, that the slightest distraction (someone shouting, a car brakes screeching, a crowded pavement etc) can really affect how I walk.

8. Remember I have to walk home again – its all very well enjoying flowers and dogs in the park and walking further, but I need to be able to get home again! Starting out I often feel quite good physically, but after only a short distance pain and stiffness can slow things and I end up being overtaken by snails. How slow am I? well it used to take me 5mins to gallop from my front door to the railway station platform when I was a commuter. The same walk now takes me about 20mins (more if the road I have to cross is busy).

9. Remember to look pleasant! Parkinson’s makes our faces so much less mobile and one of my two firm resolutions has been to try my utmost to remain as smiley/pleasant-looking as possible. Its very difficult to do! There have been occasions when I think my face looks relaxed and smiley but I’ve been horribly shocked at catching sight of me looking not only gloomy but downright cross!

I could tell you all about coping with fluctuating blood pressure, auditory dysfunction etc etc but I won’t!!  This blog isn’t meant to be about evincing sympathy but rather to show how much effort many people with Parkinson’s put into staying #incontrol for something as simple as a stroll outdoors.   We are doing everything we can to appear “normal” (whatever that is)!!

AND NOW

I have made my preparations, this blog is posted, the day is still pleasant

so

I am off out and #incontrol !

@joannekarma
#RCtheParrot

Published by

jsbcoo7

Mostly housebound these days I keep engaged with the wider world via social media. I knit and crochet for charity (and yarnbombs!), keep tabs on the state of our blue dot and find inspiration from exploration here on earth and in space!

2 thoughts on “Parkinson’s Awareness Week in the UK – #incontrol – Day 3 – come walk with me”

  1. Thank you for that beautiful blog! It also pretty much describes MS symptoms as well, which I have lived with for 45 years now.
    I never worry about appearances these days and often use a mobility scooter to get around ( we travel a lot with our caravan) and this gives me the opportunity to listen to other people who may be newly diagnosed with a ‘progressive’ condition. As a fellow traveller I commend you for being so honest, maybe someone who reads that, will be motivated to follow your way and find a better life in doing so.
    Kindest regards Vicky.

Leave a Reply

Your email address will not be published. Required fields are marked *