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WATCH: Cornwall woman describes battle with Parkinson's

WATCH: Cornwall woman describes battle with Parkinson's

Published by the Pirate FM News Team at 2:46pm 12th April 2018. (Updated at 6:06am 13th April 2018)

A Cornwall woman battling Parkinson's Disease tells Pirate FM the symptoms are not always obvious.

Heidi Reynolds, from the Lizard, is raising more awareness about the disease, as she teams up with charity Unite for Parkinson's.

Diagnosed back in 2014, the 41-year-old says she wants to get the world talking about the condition and what life is really like with it.

She said: "I lose balance easily, especially in the dark.

"At work I couldn't concentrate, I couldn't take down phone numbers correctly - I couldn't learn new things.

"There was a new computer system that was installed at work and I was shown how to log onto it but the next day it was like I had never even seen it before."

Heidi has described how she suffers from a number of symptoms, including some that people might not necessarily expect.

She said: "It took a long time to get my Parkinson's diagnosis because of my age but also because I looked 'well'.

"Since I was diagnosed I have frequently been told that I don't look like I have Parkinson's but people don't realise how many symptoms people with Parkinson's have that aren't as visible.

"For example, my brain has stopped sending signals to my body that I'm hungry or thirsty, or that I need the toilet so I have to catheterise four times a day.

"This can also mean I have to go urgently which can even result in slight accidents which are embarrassing and unexpected at my age.

"I also have problems swallowing which means I have to thicken my drinks and there are certain foods I can't swallow like salad and most meats, I have to have mayonnaise with everything!"

She adds that it can also be an issue in restaurants, as some people don't recognise it as part of a disability because she doesn't look ill.

She also struggles with cognitive issues and uses a daily sheet of tasks, with signs around the house and a 'dementia clock'.

She said: "I've had to make all of these adjustments otherwise I can't stay focused and forget where I've put things or what I was meant to be doing next which can be really debilitating."

Since her diagnosis, Heidi has done her best to make sure other people know about the condition.

She now runs a support group called Start Living Today PD, which she claims gives her a focus by organising and coming up with ideas.

Exercise is also a big part of her life, which she says helps alleviate some of the symptoms.

parkinsons

Unite for Parkinson's are now also creating a film from stories across the world to tell everyone what it is really like living with the disease.

Heidi said: "What we want is to get everybody to use #UniteForParkinsons and get people talking on social media about it so as many people can know.

"When a survey was done, about 78% of people misunderstood Parkinson's and a third of those thought there were less than 10 symptoms."

Symptoms of Parkinson's Disease varies from person to person, but here are some to look out for:

  • tremor - shaking, which usually begins in the hand or arm and is more likely to occur when the limb is relaxed and resting
  • slowness of movement (bradykinesia) - where physical movements are much slower than normal, which can make everyday tasks difficult and can result in a distinctive slow, shuffling walk with very small steps
  • muscle stiffness (rigidity) - stiffness and tension in the muscles, which can make it difficult to move around and make facial expressions, and can result in painful muscle cramps (dystonia)
  • balance problems - these can make someone with the condition more likely to have a fall and injure themselves
  • loss of sense of smell (anosmia) - sometimes occurs several years before other symptoms develop
  • nerve pain - can cause unpleasant sensations, such as burning, coldness or numbness
  • problems with urination - such as having to get up frequently during the night to urinate or unintentionally passing urine (urinary incontinence)
  • constipation
  • an inability to obtain or sustain an erection (erectile dysfunction) in men 
  • difficulty becoming sexually aroused and achieving an orgasm (sexual dysfunction) in women
  • dizziness, blurred vision or fainting when moving from a sitting or lying position to a standing one – caused by a sudden drop in blood pressure
  • excessive sweating (hyperhidrosis)
  • swallowing difficulties (dysphagia) - this can lead to malnutrition and dehydration
  • excessive production of saliva (drooling)
  • problems sleeping (insomnia) - this can result in excessive sleepiness during the day
  • cognitive and psychiatric symptoms
  • depression and anxiety
  • mild cognitive impairment - slight memory problems and problems with activities that require planning and organisation
  • dementia - a group of symptoms, including more severe memory problems, personality changes, seeing things that aren't there (visual hallucinations) and believing things that aren't true (delusions)

Source: NHS

Read Heidi's blog here.

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