Health: ‘I didn’t want anyone to know I had Parkinson’s’

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Nearly two fifths of people with Parkinson’s feel the need to lie about having the condition. We hear from two people about living the with the illness

Patrick Faith, 55, from Ballymena was diagnosed with Parkinson’s in 2013.

He said: “I was being treated for a sore back and my wife, who works in the community with others living with Parkinson’s, told my GP that she thought I might have the condition.

“I was sent to the consultant and he confirmed the diagnosis.’’

Parkinson’s is a degenerative neurological condition, for which there currently is no cure. The main symptoms of the condition are tremor, slowness of movement and rigidity. The condition affects approximately 3,600 people in Northern Ireland.

Patrick said even though his wife had suspected he had Parkinson’s it was a shock when it was confirmed and he was very emotional and didn’t want anyone to know.

“I was unable to talk to my extended family for about three months.’’

Patrick’s reticence to let others know he had Parkinson’s, is, according to the charity Parkinson’s UK, very common.

It has revealed an alarming level of fear around sharing a diagnosis of Parkinson’s, cutting people off from vital support available at a time when many report struggling emotionally to come to terms with their condition. Those who did feel the need to hide their symptoms reported not wanting people to feel awkward or embarrassed around them, feeling they would be judged, or not feeling like the symptoms were socially acceptable..

Patrick said it was ‘‘such a relief’’ when he eventually did tell his borthers and sisters.

‘‘It felt like a weight off my shoulders that I didn’t have to hide anymore.

“I would advise anyone who is delaying telling their family to do it as soon as possible and let them help.’’

Patrick’s wife also knew of a Parkinson’s support group in his area so he joined up.

“It was great to have the chance to talk to other people with the same condition as me, if they offer advice you know what they say would possibly be of benefit or they can point me in the right direction. The support group also hold events that give you important information.”

Jack Glenn, 73, from Londonderry was diagnosed 10 years ago. Like Patrick, he said when he was diagnossed he ‘‘felt in shock’’.

“I was angry and depressed but I knew I wanted to tell my family immediately,” he said.

“I felt it had to be said, there was no point in prolonging the news and I didn’t want to make a secret of it,” explained Jack.

When asked if he told his extended family and friends, Jack said: “Yes, I didn’t want the wrong information getting out and I wanted people to know from me that I had received this diagnosis.”

When asked if he had ever tried to hide or lie about his symptoms he said: “I have never lied about my symptoms but when I was first diagnosed I did try to hide my symptoms.

To be honest it was about my self-esteem and I didn’t want people to see me with a tremor, I didn’t want them to think I wasn’t one hundred per cent well.

‘‘That doesn’t bother me at all now.”

According to Parkinson’s UK People who have shared their diagnosis with their immediate family reported feeling ‘able to accept they had Parkinson’s’, while one in four reported feeling relieved, and 15% say they felt glad they didn’t have to hide their symptoms anymore. 

Nicola Moore, Northern Ireland country director at Parkinson’s UK said: “No-one should feel alone in dealing with a diagnosis of Parkinson’s. Too many people are struggling with their diagnosis alone because of fear of what people might think, say or do. 

“It’s worrying that many people with Parkinson’s, for a wide range of reasons, are not able to access the help they need - and it’s having a devastating impact on their emotional health.

‘‘We are determined that each and every person with Parkinson’s is aware of the support available so they can feel equipped to have these difficult conversations.

“We know that the right support, whether through family, friends or Parkinson’s UK, is vital

for those with the condition, to help them come to terms with their diagnosis and know that they’re not alone. We are here to help people find the support they need, when they need it.”

10 things you might not know

- Every hour: Someone in the UK is told they have Parkinson’s.

- Although it is more common in older people, people under the age of 40 years can develop symptoms

- There isnt one type of Parkinson’s: There may be five or more types of Parkinson’s according to researchers at Oxford Parkinson’s Disease Centre

- Everyone is different: No two people with Parkinson’s have exactly the same symptoms.

- What do you mean I look uninterested and distant?: Parkinson’s can affect people’s facial muscles, giving some people a ‘mask’ or a somber expression.

- What you don’t see…: Although Parkinson’s can affect a person’s movement, it’s often the unseen symptoms such as pain and fatigue which can have the greater impact on people’s quality of life

- There’s no cure: Sadly despite scientific advances, there still is no cure for Parkinson’s.

- A new treatment might be sitting under our noses: Recent research has shown that drugs used to treat cancer and liver conditions may hold promise to treating Parkinson’s.

- The answer could be in our genes: Parkinson’s UK is funding research to develop gene therapy, which uses genes to slow or halt the development of Parkinson’s.

- Parkinson’s UK is the UK’s leading charity supporting those with the condition. Its mission is to find a cure and improve life for everyone affected.

Six early symptoms

- Tremor or shaking: Have you noticed your hand or finger involuntarily shaking? A tremor can be caused by a variety of things; however it can also be a common sign of Parkinson’s.

- Loss of smell: Are you unable to smell certain things as well as you used to? There are many reasons why a person may lose their sense of smell, however research has shown that some people with Parkinson’s lose their sense of smell years before physical symptoms occur

 - Sleep issues: Although it’s normal to toss and turn, people with Parkinson’s often experience sleep disturbances like restless legs, difficulty turning over in bed, sleep walking or vivid nightmares.

- Constipation: Do you have regular bowel movements? Many people with Parkinson’s notice changes in their digestion – for example digestive and bowel problems – and recent research has been looking into how the gut may play a bigger part in the condition.

- Changes to handwriting: Has your handwriting changed? Parkinson’s can cause changes in fine movement in your hands and fingers and stiffness. Over time this can make your handwriting small and cramped.

- Stiffness: It’s normal to feel a bit stiff if you haven’t moved in a while, however if you find stiffness doesn’t go away, you may want to get it checked. This can be an early sign of Parkinson’s.

- Parkinson’s is extremely difficult to diagnose, with people often having symptoms that are similar to other conditions.

For more information visit www.parkinsons.org.uk.