It’s been two weeks since creating my website. Two weeks to think about what my first blog post was going to be. The first one will be so important, as it will establish what my blog is about, and it will hopefully be enticing enough to keep my followers coming back again with some of their friends to also follow. This first post has been so challenging too, for so many reasons. The first of which is, “what am I trying to say?” So, hopefully, by the end of this, that will be a little more clear!
As long as I can remember, ”Firsts” have always been a challenge. So much to learn, prepare for, or accept. Yet, sometimes, I need to just let it happen, and it will unfold as it should. First friend, first day of school, first boyfriend, first time driving, first exams, first party in high school, first time singing on a stage in front of people, modelling in my first show. My first marriage (a disaster), my first child (a success!) , witnessing death (my mom), losing a friend (Cammy). Running, racing, marathons, so many “firsts”. And ultimately, the reason behind this blog; my first diagnosis.
My first diagnosis with Parkinson’s, wasn’t actually Parkinson’s. It was MSA, or Multiple Systems Atrophy. A terminal “parkinsonism” with a two to seven year life expectancy. Shit, f*ck, and many other words came to mind. How do I prepare for what is to be my most challenging ”first”? Well, I know one of the first things I did, was have a Gin & Tonic! But after that, there were a few firsts I needed to do. Find a treatment - or way to manage symptoms. In my case, exercise, medication, and mindfulness. Find a friend, a community and support. Again, in my case, I saw Larry Gifford on Global news, talking about his Parkinson’s disease, and starting his podcast with wife and partner in Parkinson’s Rebecca Gifford and thought to myself, I have to meet them. I need a community. And I did. They have been instrumental in helping me. I have been so fortunate in my life to have close relationships with my friends, and they have all played a role in my journey of Parkinson’s disease and continue to on a day to day basis. And then my family. If it wasn’t for my husband Barry, my children, Thomas, Melanie, and Riley, their partners, my beautiful (outside and in) sister Penny, my big brother Doug (also beautiful outside and in) and his family, my Dad, and his wife, I definitely wouldn’t be here. And lastly, in my list of firsts, find a way to look good doing it! This was also important to me, as fashion and fun has always contributed to my self esteem. This may sound a little shallow, but it plays a big part in the life of a person with Parkinson’s, as some days just getting my underwear on the right way around is an accomplishment!
And finally... my latest and greatest challenging firsts, my first ” New diagnosis!”. After a two year misdiagnoses of MSA, my dear friend Kathleen, a Doctor, and Larry and Rebecca, thought that due to the lack of progression of my disease, perhaps it was time for a second opinion. Kathleen’s persistence, and Larry’s recommendations, got me an appointment, another first, at the UBC brain health centre, movement disorders clinic and a new Neurologist.
What I hope my first blog will bring is a lighter side of looking at the challenges of living with Parkinson’s, and how to look good doing it! How do I get a sports bra on when my fingers aren’t working? Are button fly jeans a thing of the past? Chop sticks? Really? Dental floss? Today maybe we’ll use the child flosser! And where do I buy a pair of running pants that I can actually pull up, but won’t fall down when I actually start running! Is it really running, or shuffling? Is my husband embarrassed by me? My friends mad because I canceled our outing again? How can I be there for my friends, rather than them always being there for me? How will my relationship with my children change? In what way?
These are topics that I will throw out there to try and find some answers to in the future blogs so please, stay tuned!
Until next time,
Jeanette
