Living openly and honestly with Parkinson's - Emma's story

Emma is 52 and first noticed a tiny tremor in her right index finger when she was skiing with friends. She explains: “I picked up a spoon and it started tremoring. I showed my friend, who suggested I should see a doctor. 

“When we got back, of course I started googling instead and I ticked a lot of the boxes for Parkinson’s. My sense of smell wasn’t great, my handwriting had been getting worse, I frequently suffered with restless legs, I sometimes overheated at night, I noticed my memory wasn’t as good as it had been, my neck was becoming increasingly stiff and my bladder control was getting weaker.

"These were all relatively harmless things on their own, a lot of which could be related to general ageing or being perimenopausal, but, when considered together, I thought, ‘That’s a few too many boxes.’” 

After another friend urged Emma to see her GP, she chose to see a particular doctor at the surgery because he was usually the one to say there was nothing to worry about. In fact, it turned out that GP had a specific interest in neurological conditions and at the end of the appointment, he told Emma he thought she needed a second opinion.

“It flabbergasted me,” admits Emma. “I pushed him to tell me what he was thinking and when he said Parkinson’s, I just thought, ‘What am I going to tell my husband?’” 

Shock

It took 3 months for Emma to receive her Parkinson’s diagnosis. She admits that felt like an eternity at the time, but she now understands that was relatively quick.

“As a lawyer, I work in black and white, so it was horrible waiting to be told something concrete and feeling I had to battle the system at every point to get what I needed,” Emma says.

“We eventually received my diagnosis on the Saturday before the start of the summer holidays. So you can imagine how we felt - trying to prepare for a 3-week camping trip and not letting our vibrant, fun-loving 7 and 10-year-old boys know anything was wrong.”

“Initially, my husband, Keith, and I were devastated by the news. We had no words to describe our shock or to support one another. We had no clue how to break the news to our children.

“Keith went into a long period of denial, which was only made worse by the slow progression of my symptoms. I think it was easier for me to face up to my condition because I has some degree of control over it, whereas he felt useless and didn’t want to see the person he loved suffer.”

Emma had to face her own emotions too. “I was embarrassed by my diagnosis. I was ashamed I had brought this trauma into our family.” 

'A complicated life'

Emma admits it took a couple of years for her and Keith to properly come to terms with the diagnosis. At the start, they told only very close family and friends. Whilst they were all devastated for Emma, their reactions were quite different.

“My mum was angry about it and thought, ‘Why Emma?’ My dad kept turning up on the doorstep with the latest piece of research he’d read. I learnt that was their way of dealing with it and I had to find mine.”  

As their children were young at the time, Emma and Keith were very cautious about telling their wider circle. “We didn’t want friends to know in case they were chatting at home, their kids overheard and it got back to our children.
 
“It became a very complicated life though,” Emma admits. “If Keith bumped into someone in the street and they asked how I was, he didn’t know if it was a general inquiry, or if it was about Parkinson’s because they knew or because they’d found out from someone else.

“I’m a very honest person, I wear my heart on my sleeve, so it started to become a conflict for me. I wasn’t living true to myself. With the help of professional counselling, Keith and I came more to terms with the diagnosis, which enabled us to decide to be more open. 

“We had a very gentle conversation with the children when they were around 9 and 12. We decided to slowly drip feed them information and we started off simply by saying, ‘Mummy has got an illness in her brain.’ The first question they asked was whether they were going to get it, but we’d prepared ourselves for what they might ask so we were able to settle their fears.  

“It then very quickly got forgotten. They are now 13 and 16. Sometimes I will say, ‘I’m shattered, can I get some help round here?,’ And often the response will be, ‘So am I mum!’” Emma laughs.

Telling all

Shortly after telling her children, Emma said it was almost as if she ‘came out’. She organised her own community walk for Parkinson’s UK and did a lot of publicity for it. Emma smiles: “Everyone who didn’t know about my diagnosis before definitely did afterwards!

“Opening up has also enabled me to take a very different attitude towards Parkinson’s,” admits Emma. “Much as I would prefer not to have it, I now see it as a blessing - today might be the best day I have so I make the most of it. I no longer keep things for best because you never know what’s round the corner. I savour the small things. 

“I’ve been lucky. Whilst I’ve suffered with debilitating anxiety and depression (now under control through medication, counselling and exercise), my physical symptoms are progressing slowly. I’m also blessed with a really supportive family (including my wonderful sister Katie) and group of friends, who watch out for me and pick me up when I’m down.

“In my experience, once you are ready, it is so much easier to live honestly and be yourself. It takes the stress away and it’s amazing how many people open up and share something about themselves. I try to remember to be kind to myself and to others because everyone is dealing with something.”