LIVING WITH PARKINSON’S

HEALTH, THOUGHT-PROVOKING

When Jo Yaldren was given the shocking news she had Parkinson’s aged just 47, she was utterly devastated. It felt like the worst diagnosis she could ever receive because there is no hope of recovery and no cure. Yet amongst the bleak reality of a degenerative condition, Jo’s list is full of wisdom and wonder.

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A bit about me:

  • I’m Jo, 54. I’m living with Parkinson’s.

  • I love to travel and did so widely before having my two girls. They are now incredible young women and I love them beyond words.

I love:

  • My completely brilliant family and friends

  • Music

  • My dog (borderline delinquent)

  • My cat (needy and clinically obese despite being on a diet for 3 years)

  • Films

  • Living my life through the use of niche Film references.

  • Marmalade

  • Watching people shake hands when they meet

  • Montages of things being fixed

  • Beach cleaning

  • Mending things

  • Nature

  • Receiving hand-written letters or notes in the post

  • Dancing on a podium

  • Kindness in all its forms

I do not love:

  • Litter on the beach, or anywhere really.

  • Being late

  • Being far away from those that I love

  • Conflict

  • I’m messy but love things to be organised (poor Ricardo).

  • I’m a daughter, sister and friend.

  • I love adventures and being in the mountains.

  • I was a Nurse for 30 years, mostly working within cardiology.  The last 10 of those nursing years were also spent teaching as a senior lecturer in Nursing and Principal Lecturer in Learning and teaching at Teesside University. I was on the Editorial Board for the British Journal of Cardiac Nursing for 8 years.

  • I loved teaching and spent the last part of my career developing technology enhanced learning. I gained a ludicrous number of qualifications throughout my career. My certificates now live in a ring binder gathering dust.

Erm, excuse me, I think there’s been a mistake with my order.

  • I was diagnosed with Parkinson’s in 2015 at the age of 47.

  • Parkinson’s is a neuro-degenerative condition that currently has no cure. ‘Neuro’ relates to the brain and ‘degenerative’ refers to something getting worse over time.

  • Basically, the dopamine making cells in my brain are dying.  It’s entropy at its worst.

  • It’s important to note that Parkinson’s Disease is not actually a disease but a cluster of symptoms.  We can’t catch it.

  • It was named after Dr James Parkinson who coined the term ‘the shaking palsy’ way back in 1817.

  • Contemporary documents have removed the ‘disease’ from the name and it’s now referred to as ‘Parkinson’s’. It’s an important rebranding.  Words have power.

  • Parkinson’s is the medical ‘gift that keeps giving’, with over 40 symptoms, making it a challenging condition to understand, treat, prevent or cure. Symptoms fall into two categories; Motor and Non- Motor.

  • Parkinson’s is akin to the worst buffet ever.

  • Imagine for a moment, a huge banquet spread before you.  Lots of choice, but every dish is unappealing. You aren’t hungry and if you’re going to be honest, you don’t even like buffets.

  • You’re informed someone will bring you a plate of food.  You don’t get to choose the items on the plate.  You just know that they’re not at all what you’re in the mood for …EVER.

  • You don’t know when the dishes will be served, if everything will come at once, what size they’ll be and despite knowing your serving will make you unwell, you know you have no choice but to eat what you’re given.

  • As I said, the worst buffet ever.  A clusterfuck of awfulness that comes with a side-dish of shame, embarrassment, secrecy, hopelessness and depression.

  • In 2019, after some gentle encouragement, I decided publicly to share my Parkinson’s journey using Instagram as my social media HQ.  I do use other platforms, but Twitter seems to bring out my desire to rant about politics and Facebook was full of friends whom I didn’t want to overwhelm with my health.

  • I do use them both, but Instagram felt and still feels like my social media happy place.  My Insta name is ‘LadyDuffGordon’, a survivor of the Titanic.

  • I had always kept my private life pretty private so sharing my profile publicly felt a little exposing.

  • It also felt essential if I was going to be an effective advocate for Parkinson’s.

  • I felt I could put my skills as a nurse and teacher to use.  I was used to using technology and social media to enhance learning so it wasn’t a huge leap of faith to imagine I could transfer this to raise awareness.

  • Initially I had one driving thought.  If I could help even one person have a less awful experience of Parkinson’s then my discomfort of sharing my story would be worth it.

I’ve got a bad feeling about this.

  • I’m not sure when I first started experiencing Parkinson’s symptoms.

  • Whilst at a retreat in 2015, letter writing was a pretty challenging exercise (I now understand that this is ‘Micrographia’).

  • My left leg was stiff, making sitting on the floor interesting and a tremor had also arrived in my left hand.  Despite all this and a persistent fatigue, rather shamefully, after 26 years of nursing I didn’t join the dots.

  • I hid my tremor as much as I could, but when they noticed it on a weekend away, my sisters bullied me into seeing my GP who referred me to a Neurology Consultant.

  • I arrived at my initial neurology consultation by myself because “Darling don’t be silly, no one ever gets a diagnosis on the first visit…They’ll need to do tests etc.”

  • Both Rich and the girls had offered to attend with me but I’d said it was fine and they didn’t need to.  So, I was sitting by myself when Archie (Dr Neil Archibald)- my very lovely new consultant explained that I had Parkinson’s Disease.

  • “Oh dear” was all I could manage before the tears began.

  • I was 47 and couldn’t take in the news I’d been given.

  • I was given a room to make a couple of calls. I rang Richie who was at work. It took about 30 minutes before I was composed enough to leave the department. I drove home through tears. How could this be?

  • I met Rich who had left work. We broke the news to the girls and to my parents. To my sisters and to my close friends.  I rang my boss and cancelled meetings and events planned for that week.

  • I then went to bed like Sybil Fawlty. I felt so numb and shocked… Like everything was in slow motion. It was like a way less glamorous version of when Carrie Bradshaw gets jilted by Big in Sex and the City. I mean way less glamorous.

  • A couple of days later, my sister arrived and encouraged me to get up and get out. I felt slightly out of my body. As if I was under water.

  • Usually, Parkinson’s is a clinical diagnosis, but because I was relatively young and had no previous family history of Parkinson’s, my consultant sent me for tests to investigate a little more.

  • I attended the local specialist hospital for a Dopamine Active Transfer Scan (DAT scan). This procedure involves having an intravenous injection of a radioactive material and then having a brain scan to see if the Dopamine cells have absorbed it.

  • I was also booked in for a Magnetic Resonance Imaging scan (MRI) to ensure my symptoms weren’t due to a brain tumour.

  • It may seem odd, but I had the curious experience of wishing that they would find a brain tumour. If they found a brain tumour potentially it could be removed or treated. I could be cured.

  • It wasn’t a brain tumour. I was devastated.

  • There’s a film called ‘Still Alice’ with Julianne Moore giving a wonderful performance as a young woman with early onset Alzheimer’s. It’s a brutal, yet compelling watch.

  • I felt like I was watching myself. In one particular scene, she expresses that she wishes she had cancer instead and I totally understood that.

  • A friend of mine developed breast cancer at a similar time and I envied her. How messed up is that?

  • Within a short time of her receiving her diagnosis there were fundraisers arranged.  Pink themed events widely supported and attended.  Everyone knew it was a scary big deal, those who loved her were devastated, despite this, there was hope of treatment, remission and cure.

  • It was a socially acceptable thing to talk about. It was known. Her treatment was gruelling and complex and for years she lived with the fear that she wouldn’t survive.

  • She did and I’m so delighted to report that she is really well.  She kicked cancer’s arse like a boss.

  • The fact that I thought that this was an appealing option might give you some idea of how distraught my own diagnosis left me.

  • Combative language doesn’t sit well in the context of conditions like Parkinson’s that are degenerative and have no cure (yet).  I can’t beat it, overcome it or fight it and I won’t get well soon.  Erm… awkward… shame enters stage right.

  • The language of the long-term condition is less sexy.  Acceptance, accommodate, tolerate, endure.  No gift card or headline fodder here. I’m not sure what to do about any of this but it feels right to mention it.

Shit Show

  • The nature of living with a degenerative condition or disease is that things get worse over time. There is a cascade of loss. Like the films where the protagonist heads over a waterfall, breathes a sigh of relief only to realise that another fall is imminent.

  • With each incremental loss of mobility or change in circumstances, a shift in perspective occurs and the grief process recurs.

  • For me, some of the significant drops were:

  • Diagnosis

  • Having to inform the DVLA and being given a 3-year driving licence

  • Letting my Nursing registration lapse

  • Retiring from work

  • Realising I’d done my last ski run

  • Watching a video Ricardo took of me capturing my dystonia.

  • Being told I was a candidate for Deep Brain Stimulation

  • Each took me a while to process.  Each loss also had an impact on my family and friends.

  • If I broke my leg, I think that it would be safe to say that I’d receive flowers and an outpouring of support.  People are kind like that.  With a long-term condition, this level of support is simply not sustainable.

Women with Parkinson’s

‘It’s important to remember that Women, are in fact, not just small men’ Robin Morgan

  • Parkinson’s is not a male disease. It is not simply a disease of the elderly. However, we could be mistaken for thinking that that was the case.

  • The most well-known advocates of Parkinson’s are probably Michael J. Fox and Muhammad Ali.  Their courage has been game changing and inspiring to those who have followed.

  • But… Where are all the women with Parkinson’s? There must be some?

  • For me, Emma Lawton was the first person I saw in the public domain. Who helped me realise I was not alone in my situation.

Nature hates a vacuum

  • Since taking retirement on medical grounds in 2019, my life has been filled with a variety of activities.

  • I beach clean when I’m well enough and co-founded a volunteer group ‘Keeping it Clean at Saltburn’. We run a monthly group beach clean and I write a piece in my local town newsletter to raise awareness of environmental issues.

  • I have an Etsy shop (theTinkerist) where I sell items made from sea glass, sea pottery and driftwood.  I donate 50% of profits to the 2 Minute Beach clean charity.

  • I published a children’s book on Lulu – ‘Jeremy – A noisy Child’.

  • I’m an advocate for Parkinson’s. I’ve actively fundraised with friends and family. I’ve written a variety of pieces for publication regarding both beach cleaning and Parkinson’s and have written a blog (from time to time).  Currently I’m working with Parkinson’s UK to record my journey towards Deep Brain Stimulation.

  • A friend made me a web page to collate my activity – www.joyaldren.com

This is not a drill – notes on living your life on purpose

  • My Dad has always had a fondness for westerns. Often they would include the scene of a gnarly prospector bent double in a shallow river panning for gold. Swirling the dust and sediment around and around a plate and discarding the detritus. Hoping for the weight of a gold nugget to be the remaining prize for his toil.

  • After being diagnosed with Parkinson’s disease, I had a moment of mental gold panning that has stayed with me ever since.

  • My life (much like the prospectors’ pan) was full. Work, life admin, house maintenance, social events, bills, plans for holidays, wishes for material things. Day to day life clutter that I hardly even saw.

  • During the first few days after I was diagnosed, I was in shock. I remember standing in front of the fridge. The fridge is a sort of beacon that I’m drawn to whenever I’m avoiding anything challenging.

  • As I stood looking for answers in amongst the salad and out of date condiments, I experienced a moment of clarity.

  • It was as if the swirling pan had come to rest with two gold nuggets on it.

  • Two pieces of treasure that ultimately were important to me. In fact, the only two things that matter in the end.

  • 1. Time

  • 2. The people I love

  • That was it.

  • A smart house ………………… not important

  • Fancy clothes …………………..not important

  • Killing myself for work ………not important

  • How many obituaries mention soft furnishings? Erm… None. It is the memories of time spent with those we love that we treasure most. Making those memories surely is something to prioritise.

  • I decided right then to focus on experiences rather than the acquisition of stuff.

  • We will never get to live this day again. We have an arrogance as humans that we have all the time in the world.

  • I lost count of the patients I cared for during my nursing career who had waited to retire to enjoy their lives, only to discover that fate had other plans. They urged me to live my life well and I have tried my best to do them proud.

  • My bucket list was completed aged 29 and subsequent lists have been written and ticked off.

  • Those patients were focussed. They were looking at life through a different lens. One that clarified their reality and I owe each and every one of them a huge debt of thanks.

  • It feels only right that from my current situation I pass on my own version of their wisdom.

  • I won’t include the advice of a chap in his 60’s who sagely told me to put off buying white goods (washer/ freezer etc) as it was almost impossible to spontaneously go on adventures with such things in tow.  It hit a chord and I used a Laundrette for years! Adventures occurred.

  • Instead, I’ll humbly offer my own top tips for living well with a degenerative long-term condition.  Or just for living well.

  • Exercise

  • Practice gratitude

  • Use vision boards to help you focus on your goals and dreams

  • Do something for nothing

  • Try Yoga

  • Try Tai chi

  • Talk to someone about how you feel (access counselling)

  • Try to spend time in nature

  • Try Reiki

  • Try Feldenkrais

  • Rest when you need it.

  • Use your voice – consider advocacy to support the things that matter to you.

  • Be true to yourself… Practice Authenticity

  • Cry if you feel the tears coming

  • Explore your treatment options and follow your own compass

  • Travel and explore if you can

  • Say yes to new experiences

  • Avoid the temptation to gossip

  • Be kind to yourself and others

  • Eat well and mindfully

  • Ask questions and actually listen to the answers.

  • Enjoy all the bits of your body that work before they don’t.

  • Fuck up. Forgive yourself. Repeat.

  • Forgive.

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HELPFUL RESOURCES:

Parkinson’s UK: parkinsons.org.uk

NHS – Parkinson’s: nhs.uk

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FANCY SOME MORE?

–  READ Becoming a Mum While Losing Mine To Alzheimer’s by Jacqui Gillie, who heartbreakingly explains how this cruel disease has taken away their future together.

–  READ Make It The Best Thing That Has Ever Happened To You by Susie whose upbeat list details what happened when she woke up paralysed after emergency surgery on her spine. 

–  READ The Imperfect Art Of Being A Carer by Penny Wincer, who cared for her mum and now cares for her son who is autistic and has learning difficulties.

–  LISTEN to Hat Hewitt talk about her mum’s diagnosis of early onset Alzheimer’s and the difficult decisions they’ve had to make.

–  LISTEN to Ben Tansley on the topic of Disability and what the word means to him after being told it was unlikely he would ever walk again.

 

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OR HOW ABOUT WRITING A LIST?

Find submission guidelines here. All writers and topics are welcome.

 

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** ‘But why don’t I feel happy all the time?’ ‘But why do people die and are they just sleeping?’ and “But why do adults drink beer and what does it do?’ are some of the tricky questions I tackle in my debut book BUT WHY? which is available to order now and also on audiobook.**

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