THE BLOG

I Fight My Fiancé's Killer Every Day - Parkinson's Awareness Week

13/04/2017 13:02 BST | Updated 13/04/2017 13:02 BST

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This week is Parkinson's Awareness week and I will be blogging about my experience as the partner of a person with Parkinson's. My fiancé Ryan was diagnosed in 2015 at 36 with Early Onset Parkinson's Disease.

The title may sound dramatic but on the difficult days this is how it feels. One of the little known symptoms of Parkinson's is the mental health issues that can accompany the condition, such as depression and anxiety. There is a lot more research being conducted into this symptom and although Ryan thankfully doesn't have depression, the anxiety he experiences can be quite debilitating and it's basically killing his personality.

When Ryan and I met he was extremely social, we were always out and about doing something. Within a couple of months of meeting we went on trip to Paris, a dream I'd had for many years that was wonderful to experience with my new love. A couple of months later I called him up while he was in work and said: "hey, I've seen an amazing holiday deal online, do you fancy coming on a family holiday to Greece in Six weeks?". He didn't even have to think about it, it was simply: "yes, book it".

If I want to do something it can take a while for me to just build up the courage to mention it because I know he's instantly going to be hit with anxiety before even processing what I've told him. His first response is defence, which can then lead to an argument. It can then take a few days for him to think it all through to make a decision. My Ryan, the man I fell in love with wasn't like that, like me, he was spontaneous and impulsive with a zest for travel and exploring. Although I know that man is still in there, I have to fight this top layer of protection to get to him. He still wants to do these things but he has to battle with the anxiety, this social killer, before he can do anything.

We went to Disneyworld Florida last year. He thought I was going with my eldest two when in fact I'd booked tickets for the whole family. It took me about three months to convince him to come along, showing him videos on YouTube, conveying to him what an amazing experience his girls would be experiencing without him. Eventually he agreed to come and I showed him that he was booked to come along the whole time. He had an amazing time and for some reason, his anxiety seemed to disappear for those 11 days - I guess Disneyland really is the place of dreams, it was mine anyway - a family holiday with zero stress and anxiety. Our trip alone to Rome was a very different story!

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Being a food lover, I love to eat out, Ryan does too. But now if I can actually convince him to eat out it has to be at a certain place and certain time - he doesn't like to go at peak time when it may be busy or somewhere he may feel exposed and people can see him tremor. But we've found ways to cope - we have our favourite places to eat. When we walk in to a restaurant I'll let him choose his seat first so that he's more comfortable. We're adapting. If I plan us an evening with friends I won't tell him until a few days before just so that he doesn't spend a few weeks stressing about it.

But the daily fight takes it's toll. I've called off our wedding more times than I care to remember, not because I don't love him, (I love him more than I've loved any other man) but sometimes the fight gets too much and the idea of spending my whole life fighting my husband scares the hell out of me. But then on the flip side, I could never imagine my life without him in it, even when he's in arsehole mode (which is often!).

And sometimes I feel like I'm in mourning. When we were told that Ryan had Parkinson's I was relieved. I was so terrified that he had a brain tumour or something terminal that I was just so thankful that he wasn't going to die. But although he's still with me, his personality, the man I fell in love with is slipping away. He's still in there. I know he's in there because I see him at times. Just this weekend while he was with a group of his friends, my Ryan was there, shining brighter than I've seen him for a long time. So, my job as his love is to make sure he's happy and comfortable so that my Ryan can break free of his captor.

We are extremely lucky to have amazing support from his neurologist, the Nurse Practitioner at our Dr's surgery and his assigned Parkinson's nurse. Our next step will be to see what else is on offer to help with the anxiety. Ryan is currently un-medicated for Parkinson's but does take medication for the anxiety.

What frustrates me the most is that as Parkinson's currently has no cure. One day he may be physically limited and won't actually be able to do all of the things we'd planned to do. It's more important than ever that we live our life and fulfil our dreams as much as possible so that one day when we are limited we can look back on pictures and videos of our wonderful memories together and say: "look what we did, look what we achieved". It just seems so unfair that his mind is trying to hold him captive now and his body will hold him captive in the future. Parkinson's is such a cruel disease.

And this is why I will fight the bastard (anxiety) every day. You will not take my fiancé. You will not take my girls' daddy. You will not take our lives. One day the Parkinson's may restrict us - but not now. Now we're going to fight and live our lives as best we can. You hear me inside there Ryan Lee? I will not give up on you, you're mine and I will not let the bastard take you away from me, I waited too long to find you to lose you this soon.

F you Parkinson's! F you Anxiety, he's mine!

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Picture above is from England V Wales, Welshgirl against Englishman! I generally lose!