I have spoken before about how open I have been about my diagnosis, since almost the moment I was diagnosed.
I find that I refer to it quite often in my interactions with people, in part so they can hopefully understand that I have – or may have – additional needs compared to ‘Non Parkies’ folk. While looking for houses to buy recently, I have been open about my diagnosis as a way of illustrating my current needs to be mindful of when seeking a new home. But, more particularly likely future needs. I admit this house hunt has been different to any previous house searches due to the Parkies element. In some ways it is challenging to look at ‘worst case scenario’ when looking at housing needs. For example – ‘will the toilet have a big enough turning circle if I have a walker?’ or ‘can we make the shower a wet floor area?’ I don’t see this as a negative viewpoint, but a dose of realism which is important to consider.
I think sometimes I surprise my husband how open I am with strangers about my having Parkies. However, it is a constant companion in my life journey and as such needs to be ‘on the table’ when discussing potential home environments. It is important for me to be able to stay with my husband as long as I can – if he can continue to put up with me – so the right house is vitally important.
I know well now how my own Parkies affects me and sometimes it is difficult to explain. Sometimes perhaps people may think I am ‘milking it’ by being so open. Far from it! I choose to be open not to garner sympathy, but rather understanding and also to educate and inform people about how able a person with Parkies can be. Also, by being open I am showing that having such a condition is not something to be ashamed of. As far as I know, this condition has not been caused by anything I have done, so I feel no need to blame myself for having it. Just like someone with arthritis – which by the way I also have – it is just a ‘thing’ that affects my life and needs to be understood and accepted by those who surround and support me as much as I need to understand and accept it myself.
So, in a nutshell, my philosophy is this.
Parkies is an integral part of who I am now. While it does not wholly define me it is not going away and therefore the more I share my journey the more I will feel accepted as a whole.