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Lill's story: coping with Parkinson's as a couple

Lill Jacques, photographed with her husband Rob.

Lill's husband, Rob, was diagnosed with Parkinson's in May 2015 when he was 35. Lill tells us about the shock of Rob's diagnosis, how they cope as a couple, and their hopes for new treatments in the future. 

Following Rob's diagnosis, Lill has pursued her long-term ambition to become a nurse. She is currently half way through her first year of university as a student nurse.

Lill and Rob

"I'm married to Rob and have been since 10 November 2012 when we had a wonderful wedding. With the exception of our car engine blowing up on our mini-moon to Anglesey, we started married life off as normally as any other couple.

Rob's diagnosis

"Since late 2013 - early 2014 Rob started complaining of pain in his right arm and in the top of his right leg. Things progressed to the point where he was struggling on a daily basis with 'simple' things like using his computer mouse or chopping vegetables. 

"He started experiencing a shaking in his right arm and was struggling to get up from the sofa, sometimes taking him 3 or 4 attempts to stand up.

"We were advised that Rob needed to see a neurologist as soon as possible and the quickest way to do this was for him to stay in hospital overnight. He was diagnosed with Parkinson's the next day.

"I remember thinking Rob's too young for something like this. I remember wondering if this was something that killed people. I remember sitting on that chair, looking at Rob, and starting to cry.

Thinking about the future

"In time of course my thoughts turned to the future and how we would deal with everything. 

New treatments, for us, would mean hope.

"Rob's current treatment has been confirmed by the consultant as not working and we await an appointment for the trial of an Apomorphine pen in the hope that it will improve Rob's quality of life.

"However, we are aware that there is no never-ending list of treatments and that Rob may prove more of a challenge than others when it comes to treatments (according to his neurologist) so the hope is that new treatments are licensed soon so that we have more options for Rob.

"New treatments, for us, would mean hope. Hope that we can continue to have the quality of life that a young married couple deserve."