I won't let 'Mr Parky' rule my life

Parkinson's is associated as an old man's disease. Tremor, shuffling, slow movement.

So imagine my horror at 47 when I was diagnosed with Parkinson's. I was working as a doctors' receptionist and I handed in my notice as I was unsure what the future held.

I could just let it rule my life or I could fight back, so I fought back.

I pictured this gentleman dresssed in a white suit, a hat and white socks and shoes. He had his foot inside my front door, he kept knocking but I refused to let him in.

 I named him Mr Parky.

I was surprised how little I understood of the illness so decided to research it myself. I was put on medication and slowly my symptoms improved. I too suffered from slowness stiffness and shuffling- these are called motor symptoms - but there is more to the illness than what you see.

You can lose your sense of smell, taste, it can cause depression, anxiety, it can affect your thinking, memory. It's classed as an invisible illness, people suffer with the illness but you can't always see the symptoms.

So next time you see someone swaying or having trouble getting money out of their purse or they are shaking, don't assume they are drunk, it could be just a side-effect of the medication they are taking.

You have good days and bad days with Parkinson's. Usually if you have a good day when you feel normal, you go a bit mad but the next day it catches up with you, it's a case of learning to live with it, not be ruled by it.

I have gained friends and lost friends since my diagnosis. I have, through Facebook, found a good friend who lives in my area who also has Parkinson's and our friendship has just grown and grown. We talk about our symptoms and we help each other through the bad days. Without her I'm not sure where I would be.

I'm 53 now and six years into my illness. I was told I would get five good years and my medication has increased considerably to 16 tablets a day. My medication has stabled me for now. You have on and off moments in the day when you are waiting for the medication to kick in, so you can continue functioning - this is known as off time.

I've learned to live with my illness and i'm not embarassed to tell people that I have Parkinsons. I don't want sympathy, I just want people to understand the illness more and make people more aware of it.

There is not enough publicity - no information in doctors surgeries or advertisements on television. People with Parkinsons have to fight for benefits like Personal Independence Payment (PIP), we don't get free prescriptions unless you are over 60. I have to collect 10 boxes of medication each month that last me a month. Things need to change.

Staying positive, eating well and doing gentle exercise will help. No one understands Parkinsons liek a fellow sufferer.

We are extremely lucky with the support we have in Oxfordshire, I see my neurologist every six months and the PD nurse every six months, the PD nurses are always on hand and wil ring you back within 24 hours or earlier if it's urgent. 

They will also communicate between you and your consultant or GP if needed.

I have done a lot of research on the illness and to live with it you need to understand it.

I speak to a lot of people who have Parkinson's and they tell me they are experiencing this or that, my reply is, 'you are normal in the Parky world'.

No one fully appreciates what it is like to have Parkinson's not even the medical professionals.

One day we hope for a cure so other generations are not stripped of their lives by this horrible disease, but for now I will continue battling through each day and living my life to the full when I can.

I may have Parkinson's but it doesn't have me.

Linda. 

This article was written by Linda and first appeared in the Oxford Times Thursday, December 5, 2019