Warrior Spirit Award – Louise Penn

Hearing our Tribe member’s stories of hardship, acceptance, triumph and above all attitude is one of the real highlights of working with PD Warrior. I hope you find Louise’s story as inspiring as I did!

“I’m 59 and last year moved from Norfolk to Wiltshire to live closer to the grandchildren. This was possible because my husband and I had been fortunate to retire early. My background was in nursing then teaching KS2 and finally multiagency family support in Children’s Services. We moved into our new home in January 2020, had a new grandchild in February and were locked down in March. As with the rest of the world there followed the most bizarre of years! My husband and I are very fit and had been training for our first triathlon of the season which was due to take place in Bermuda! (Yes, I know, how lucky are we? He grew up there but that’s another story). Anyway, we defaulted to daily walks discovering the beautiful countryside we now live in.

In 2018 I had seen my GP about a slight tremor in my right hand, my slightly dodgy memory and, strangest of all to me, about what I referred to as “smell hallucinations“. He listened carefully, tested my memory and referred me to a neurologist to rule out PD. The neurologist took one look at me and sent me packing! I know this is a common experience. As 2020 wore on with its social distancing and sequential lockdowns I found myself slowing down in a way I couldn’t put my finger on. I couldn’t easily get out of the car or rise from a chair. I put this down to arthritis in my knees and stopped running. I spent whole afternoons on the sofa and was still waking up in the mornings exhausted with dead arms from a night of lying on them. Was this a consequence of lockdown inertia? On the occasions when we were allowed to have the family over I found myself overwhelmed, unable to follow conversations and struggling to change a nappy. The tremor I’d had in my hand moved to my leg when I was resting in the evening. I started brushing my teeth with both hands. I had stopped wearing makeup partly because of lockdown and partly because I had realised that my grandchildren love me whatever I look like. On our daily walks I realised that my right arm wasn’t swinging.

Then in the brief spell between lockdowns we met some neighbours who popped over for a drink in the garden and in the fall they asked us over for supper….a proper dinner party! Out came the mascara. That’s when I realised that I was almost completely incapable of applying it now. We had a wonderful time but I had to drink with my left hand and during the meal I couldn’t understand why my plate was still full when everyone else was finished. This is when I decided to talk to my GP again.

He was very sympathetic and in light of my concerns and symptoms and the impact of covid on the NHS agreed to refer me privately to a specialist in movement disorders NOT a neurologist. In early December, on a bitterly cold Friday night, I drove on my own (because of covid) to see the specialist 40 minutes away. He was brilliant. Listened very carefully to me, watched me walk across a room, did two or three very basic neurology tests involving fingers and feet and said he’d like to start me on Madopar to treat my Parkinson’s! When I got into the car I called my husband to let him know so that he could digest the news before I got home. It was a strange drive…I ended up behind a tractor carrying Santa in his sleigh!

I immediately told the children, my siblings, my closest friends and all my family. Delivering Christmas cards to the neighbours we had got to know was an opportunity to share my news and I never cease to be overwhelmed by people’s kindness and compassionate response. In many ways I was relieved at the diagnosis (though the end stages of PD is literally my worst nightmare!) but for some reason I couldn’t stop laughing about it. I think I was relieved to have an explanation for what I had thought of as early ageing. Family meetings were held. It was agreed that I wasn’t able to change nappies anymore and best if I wasn’t left to care for the grandchildren on my own.

My GP daughter called on her many friends and one of her besties, a Neurophysio, recommended PD Warrior. So in mid January this year I started the Madopar and in February the 10 week challenge. Both made an instant impact. I feel very fortunate to have responded so well to the first medication I have been offered and PD Warriors has enabled me to take ownership of this dreadful disease and make informed choices about the way forward. Covid lockdown was still problematic but through the wonderful PD Warriors community on FB I was able to make contact with Vicky Knight when I read Julio’s inspiring story. I found it very helpful to have some coaching that was personal to me. The programme itself I LOVED! I found it very well paced. I am very lucky to be starting my PD journey from a point of fairly good fitness levels and as someone who sees exercise as a cornerstone of life, but PD Warriors has helped me to understand what my body now needs to keep functioning for as long as possible; a completely different approach to exercise focussing on amplitude, scale and effort. As you can imagine we had tears over Christmas as our family digested the news but my husband (PD Buddy) and children have been so amazed to see the progress I have made and they are all so proud that I am a PD Warrior. On the downside I have been put back on nappy changing duty!

One day while exploring the Cure Parkinson’s website with my daughter we came across the fundraising ideas. It turns out that she had skydiving on her list of things to do before 40. Now, I have literally never wanted to skydive but having this diagnosis seems to have freed me to think “what’s the worst that can happen?”. So we’re booked to jump out of a plane together in mid June. I have also booked into a local super sprint distance triathlon in late June and one day I will take my husband up Striding Edge. Oh and most importantly, in terms of targets, I am back to drinking with my right hand AND can apply mascara again, so watch out when the pubs reopen!

I feel I have had an extremely fortunate life. I have a supportive and loving family, I’ve had a career I’ve loved, and have been able to travel widely. The PD is just tough luck and I’m determined to get on with it. My motto on social media has been “so glad I danced on tables when I could” mainly in reference to stops at Folie Douce during skiing holidays. Vicky has assured me that I have some table dancing left in me and having completed the 10WC I believe her. Just as soon as the ski resorts are open again we’ll be back!”

 

 

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He is tenacious in his commitment to exercise and fighting Parkinson’s and does an outstanding job putting into words his Relationship with Parkinson’s…
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Past, Present and Future, by Stephen Knox:
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“Writing a story about something that occupies your past, present and future…

June – John Lake

Looking back, some indicators of PD had been there for maybe up to two years before my diagnosis in April 2019. Principally my hand writing (I am R hand dominant) was becoming more and more laboured. Some eight months earlier I had decided to learn the violin, so the clincher became that I could not bow smoothly with my right arm, which became increasingly frustrating for me and my teacher. My father was afflicted with Parkinson’s late in his life, so all added up, the diagnosis was just a confirmation of what I already suspected.

January – Julio d’Escrivan

Julio is the perfect example of dreaming big and not letting Parkinson’s Disease put a ceiling on what you think you can achieve. Remember your goals and achievements are specific to YOU. Your marathon might be successfully walking around the block. Your Ironman might be climbing a set of stairs with more confidence. I hope you find Julio’s story as motivating as I did:
I am a composer of music for audio=visual media and a Senior Lecturer in Music and Sound for The Screen at the University of Huddersfield in West Yorkshire…

Responses

  1. Really inspiring Louise! I recognise a lot of your story about the long road to diagnosis. Really fantastic that PD warrior and medication has got you back training, planning sky dives and even nappy changing!! Like you I definitely am still determined to ski again and hope PD warrior will help make sure I can! Hope you’re enjoying life in Wiltshire, I’m in Hampshire so similar part of the UK!

  2. Louise, what a great story! I empathise so much, a lot of what you describe happened to me, including the smell hallucinations (but not the mascara thing… hahaha). The good news is that PD Warrior as a life style makes a huge difference as you are finding and I have also. You should swim the Solent with us!!!!! 😀 BTW the St Croix Half Ironman in the British Virgin Islands is one of the best triathlons I’ve ever done (and hardest hahaha!) if you time it with a Bermuda trip you can do it! – also, I think that with the PD Warrior approach to living with PD we should be able to be fully active and functional for a very long time, I have no doubt! 😃 🤗 🤗

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