I feel like for this whole blog I could simply write - Life aye! - And just leave it at that. Life is bittersweet and I know there are a lot of people experiencing the bitter side of life at the moment. The world has completely changed since 2020 and Covid-19. It’s changed individual lives... Continue Reading →

What defines me and if I were to lose everything would it be enough?Recently I was able to sit with someone who had just received some news that pushed her over the edge wanting to end her life. A few years back she was involved in an incident that left her disabled. She is in... Continue Reading →

For those who don't know, sadly 15 days ago, on the 13th of August my Mum passed away. She has been a great inspiration to my sisters and myself as she graciously went through the stages of MJD. This is what my sisters and I shared at her funeral. Here are some things you may... Continue Reading →

​My parents are good at struggling sightly, I should know this by now. I remember five years ago when Dad rang me to say that in a week’s time, Mum was going into full time care and the plan was for it to be permanent.  They dealt with that emotional rollercoaster, Mum was only 49... Continue Reading →

​I started writing this blog about three months ago after I went with my sister to her specialist appointment. I am not sure why it has taken me so long to finish it. I suppose maybe the challenging points in this blog make me reflect on how I did and do now live my life... Continue Reading →

This blog has taken me about a month to finish. The past few weeks have just been one thing, after another thing, trying to get me down and keep me down. My life has been pretty much like the picture below. Although at times I have been frantically trying to get myself to somewhere that... Continue Reading →

Some of you may wonder why I am doing these blogs. Why do I not just keep things private? I believe that by sharing our struggles, you can help others and others can help you. We are not meant to travel through this life alone. The past few weeks, life has been pretty overwhelming with lots... Continue Reading →

In my last blog I said how I’m not going to sit back and take it, I’m going to STAND AND SCREAM. Scream about hope, scream for those who are hurting, scream that the fear of what may come will not control me. Well this is me SCREAMING for those who are hurting. Now this... Continue Reading →

I wrote my first blog post about a month ago. I wrote this blog for a few reasons. For my family; particularly my husband, parents, sisters, and brother in-law. It was also a chance for me to share this news with the others in my life, to allow my friends to find out what was... Continue Reading →

​Roughly four weeks ago I found out that I inherited a degenerative gene in my family called Spinocerebellar ataxia type 3 (SCA 3), also known as Machado-Joseph disease (MJD). Basically it is a progressive decline in muscle control; losing coordination, balance, speech, swallowing, eventually requiring wheelchair assistance and the support of someone to help you with everything. There is no cure for this disease...