Poetry in slow motion. Help beat Parkinson’s

Parkinson’s is a game changer

Like an unwelcome stranger

Taking Dopamine cells once rife

Stealing plans and dreams in later life .

Fighting The Game Changer ( on behalf of Sheffield Parkinson’s support)

Hi, my name is Andrew Burton

I am in my late sixties and was diagnosed with Parkinson’s Disease (PD ) in 2014. 

Eleven years on, I have first hand experience of this progressive neuro-degenerative condition . Its calling card leaves you with slow or frozen movement with a tremor or shakes. In some cases muscle rigidity leads to freezing of gait without warning . Inconvenient to say the least when this occurs at the airport or Post Office where you have to move with the queues.

PD can literally switch you on and off through stress and impacts on over 150k people in the UK.

No , not true . Counting carers, partners ,family ,friends ,specialist nurses etc, it impacts on closer to half a million people here.

Shuffling ,slow movement and shaking ,you may know about that . Less is known about non motor symptoms which are unwelcome in later stage Parkinson’s. 

Of course there are similar painful , unpleasant and unwelcome issues in later stages of many chronic conditions .Why is PD in such a bad light.? Well , in its final stages, all manner of ill health problems could have kicked in making life extremely uncomfortable .

Care - giver support is necessary . By this time trips to the cinema, nights out , holidays , allotment , dog walks etc have long gone .

Clearly, the non motor symptoms present as the lower part of the “tip of the Iceberg.” Over and above (I mean below) the slowness etc there’s over 40 symptoms lurking.

PD is real. It is progressive , meaning it worsens over time . It’s bad enough having just the movement symptoms on stop and stall, it also plays on the mind that only a couple of years ago you could polish off a 10k run in 50 minutes. PD, is a classic case of he/she is not the fit, bubbly , socially adept person of old .Shadow of former self and so on .

 There’s little to be gained from the past . The approach to be taken is that this is a condition that is going to change my life , this is not the worse thing that can have happened to me .

. 

The best way to deal with PD is to stand up to it .Once you get over the devastation of diagnosis , get informed about timelines and what you can still do. See what you can do to to make a difference . The mindset and a certain amount of exercise hold the key to coping with this condition . You are on a journey, make the most of it.

So, I need to tell you about poems written by myself and co -Sheffield PD person ,Anne . We have over 20 poems about life with PD. We’re not talking pure poetry . More like creative , moving , emotional ,relatable and funny stories set to verse . Yorkshire grit and wit .The fund raiser here is to meet the start up costs for 250 poem books about life with Parkinson’s . If we make target for the print cost ,every book sold at RRP £9 will go to the charity Parkinson’s UK. 

 Parkinson’s poetry isn’t new . This project however is different. It explains Parkinson’s in plain speak giving poetic examples of every day symptoms, The reader , that’s a person with Parkinson’s , can identify with the experiences . What this brings is a sense that they are not alone in this which can have a major impact on outlook.

In fact , these books get passed around a wide network of supporters .

We know this because we published an exploratory poem book in late 2023 which raised £2200 for Parkinson’s UK. The 2025 version , which we plan to have ready by World Parkinson's Day in April hopes to further improve PD awareness and donations. I just need the start up cost bringing home .

 The title of the award winning *prototype was “I’ve got Parkinson’s but it’s not got me “

The new one might be the same title but with a 2 on the end . My thoughts about cover design are ongoing , ideas welcome .

Thank you for reading this. By donating, you are helping others to stand up to this nasty , complex condition . They will cope better as a result of your kindness in being a game changer . Research gives hope. Treatments like deep brain stimulatiion gives hope. Knowing that you are in the same boat as others drives hope. Hope is a powerful force for people who through no fault of their own have had to forego joy and happiness for assisted comfort and pain. 

 

Thank you

Annex below. More detailed information about PD.

Parkinson's gets worse over time. After 10 years it can be tougher. Then a number of symptoms shown below , could present.

Non motor symptoms include………

Poor hand writing 

Loss of balance leading to falls 

Soft voice, no voice,

Drooling

Can’t cut food 

Constipation

Frozen finger(s)

Jaw locking 

 Neck rigidity , no driving 

Insomnia due to restless leg

Leg cramps ,whilst attempting sleep

Fatigue due to poor sleep 

Rigid face muscles , no smile

Social withdrawal 

Poor posture causing back pain 

Hallucinations

Obsession , fixed focus 

Anxiety 

Depression

Cognative slow down 

Loss of an emotional response in self and others 

Freezing of gait, requiring a care giver or at least equipment to get up

And if these and more are not enough , Dementia is more likely if you have PD. Chances are high.

 

 

 Let’s fight on and provide researchers with the resources they need to find a cure.

thank you

Andy b

*award won 2024 . Community award fund raiser Parkinson’s uk