My daughter has never known me as ‘normal’ – for lack of a better word. She was seven when I was diagnosed with Parkinson’s disease two years ago and I began exhibiting symptoms when she was just one.
She would see me sometimes struggling to walk across the lounge floor, and at times when it was really bad I couldn’t even get out of bed in the morning. My daughter has seen me at my lowest, but she has also seen me overcome the challenges that Parkinson’s brings.
I was 45 when I was diagnosed. It may sound strange, but it actually came as a relief when the doctors told me Parkinson’s was the reason behind my symptoms. The problems I was having with my movement steadily got worse and just before I was diagnosed I was probably at my lowest point – both physically and mentally.
Parkinson’s has taken me on a journey as a mother. Managing the disease can be a struggle, but even more so when you have a young daughter who you want to play with.
Prior to my diagnosis I worked in an office three days a week. I would put on a mask for the outside world, but that was becoming increasingly difficult to maintain and it was impossible to wear that mask at home.
My symptoms began very slowly. My leg would drag after a while and when my daughter, Abbie, was about four my symptoms got worse and other people started to notice that I was not moving properly. I couldn’t move quickly and was very stiff; it got to the point where I was very low and was unable to look after myself.
Before I was diagnosed she used to call her dad the ‘outside parent’ and I was the ‘inside parent’ because she and I didn’t go out and do things. That was really difficult, because that wasn’t me. I am not an indoor parent.
My husband did all the caring for our daughter in the years leading up to my diagnosis. I struggled to get myself dressed, and he had to help me. I couldn’t drive. I would rely on friends to help me fetch her from school. We wouldn’t do any activities together because my life was just a struggle. You don’t want to get out of bed in the morning.
I first went to the doctor in 2011. It took me a while to get diagnosed, but after I was referred to a neurologist, they determined that it was Parkinson’s. Although it isn’t curable, it is treatable.
When it came to explaining it to my daughter, I told her that I had been to the doctor and that they now know what is wrong with me. I told her that, although it will not go away, the doctors can make it better. She just accepted it
When you hit a low in your life you do really have to focus on what is important to you. For me, this was making memories with my daughter. I didn’t want her to only think of me as a person with Parkinson’s. Being a good mum isn’t just about making all the sacrifices for your child, it’s also about being a good role model for her as well.
I have achieved a great deal in the years that I have been living with Parkinson’s. Last year I took part in the Wolverhampton Half Marathon relay team. The run was a return to being me. I’ve never been a great runner but it is something I really enjoy and it was one of the toughest challenges I have done. I have also done a wing walk, which involves standing on the wing of a flying aeroplane. This was a dream come true as it was something I had wanted to do for more than 20 years. I describe it as my ‘up yours’ Parkinson’s moment. We have also been able to go on a family trip to Disney World, in Florida, which taught me that we can create great memories together.
My daughter sees me at my absolute lowest, but she also sees how I persevere. I make sure that she sees me challenging myself, such as making sure that I exercise and go to the gym.
I wouldn’t be able to do any of this if it wasn’t for my diagnosis and the opportunities the medication has afforded me. The medication completely changed my life. There’s about an hour after I take the medication where nobody would know that I have Parkinson’s. I am finally able to be an ‘outside parent’.
My anxiety is still sometimes there. I do worry if my medication will stop working when I take my daughter out. I could be in the street normally and within a step my walking is thrown out and I am not walking normally anymore. But it’s important that she and I have that time together, such as going to the zoo or going to one of the local National Trust parks.
She also understands that there might still be days that the medication just isn’t so effective, and that means we can’t always go through with our plans. Life has challenges. It isn’t perfect, but you don’t give in and you enjoy it. I’m back at work three days a week and we are planning as a family to walk up Mt Snowdon.
My condition has helped shape the way my daughter sees the world and treats people, and that is something I am grateful for. She has seen me with Parkinson’s and that has helped her to become a compassionate person. She knows that people are different and just because they are different, it doesn’t mean that they are bad. She accepts people for who they are and for that, I am a very proud mother.