Living with Parkinson’s as a young person is really tough. People don’t understand it when you say you have Parkinson’s because they only expect old people to
get it. You become an old person before you’re ready for it because of what it does to your body. For around ten years now Parkinson’s Disease has been taking things from my life. My lifestyle. My hobbies. My independence. At times even my dignity.
My mobility has suffered so much as my condition continues to deteriorate and it frustrates me no end. Not just because there are so many things as a young parent that I HAVE to do, but also there is so much I want to do and my mind goes crazy being held hostage by an exhausted body that just doesn’t have the will to go any further. Just a trip to do the grocery shopping would result in me coming home for a three hour nap and still feeling like I was recovering from a marathon.
Despite using a wheelchair for long days, big events and times when I just wasn’t safe to walk it was still a struggle. Then the final axe fell when the neurologist said, “I think it’s time we reassessed your fitness to drive.” I gave him the information he needed to make that call. I knew it was time. There were just moments in the car that made me feel like I should not be behind the wheel. I know it wasn’t safe. Not being able to drive is like taking the last square of chocolate from me. It was all I had left to hang on to my independence and my purpose. Without being able to choose when I want to pop to the shops or go to an event without having to rely on anyone else I feel like a burden. Without being able to drive my kid the 3kms up the hill to school and pick him up I loose my sense of purpose.
In my usual spirit of not being ready to lay down and die just yet, I got onto Gumtree and for a few weeks I hunted and researched mobility scooters. I don’t qualify for funding from the government so I had to rely on family assistance and saving but I found one that would suit for the time being that I could afford and I tell you it has changed my life.
This is Eleanor. I named her after the Mustang from Gone in 60 Seconds (one of my favourite movies ever) because to me she’s the elusive key to breaking the curse and getting my life back. I’ve only had her a few weeks but already she’s made such a difference. I can go shopping and still come home and help put the groceries away. I can go to the shops and check the post office box without having to wait for someone to come home from work and then disturb their rest time to ask them to take me. I can “stroll” around the shopping centre for as long as I like without having to buy a beverage I won’t drink just so I can sit somewhere to rest. I have more energy on the days that I would normally quit due to exhaustion. People, particularly elderly ladies, have stopped me to talk to me about her and ask how hard it is to handle etc and they become inspired to want to give it a go and get their lives back. I know I get some odd looks because people don’t expect to see a young woman cruising around on a mobility scooter but I plan on making it worth while. I’m going to pimp my ride with the help of my two boys and really make her stand out with my personality.
Eleanor has given me my freedom.
We’re also moving house. Closer to my son’s school so that he can ride a shorter distance and closer to public transport so that I can still maintain somewhat of a social life – even if I am rather anti social at times.
If you’re in my position and hesitating I say to you, STOP THAT. Just do it. Don’t worry about what other people might say or think. Take your life back.
Of course this also means I am discovering more about our inaccessible world and yes, you guessed it, that’s the newest challenge I’m taking on. But more about that some other time.