Stella Guy

As if the ability to speak and move weren't enough to be losing, I now have the thinnest of hair, which I can no longer style it colour and let's face it do I want to spend everyday at a hairdresser or risk mutilated ears from my husband trying his best 😲😬❤️. So now I am struggling to find the best hairstyle that I can wash and go with 😭😭. Not been successful yet.

Last weekend was exhausting but great as my daughter Amy flew up from Brisbane. Precious moments that mean so much. A day out at Port Douglas with a stop at the lookout on our return. A wonderful day

The MND is progressing slowly thank goodness but I have started to need my wheelchair to enable me to go longer and further in my adventures. My grandson loves this as I am his personal chauffeur 🤣. On the adventures news we are going cruising for the first time 😲. Completing that bucket list. Grabbing life experiences while I still can 😁. Kicking Ass At MND.

My wonderful daughter Amy has sent me birthday and Mother's Day gifts. All very thoughtful gifts and some made personally with her gifted hands. Great news!! Amy is joining me for the walk in July. She is making the journey up from Brisbane to spend time with us and has registered for the walk. So very proud of her. So proud of all my children. So lucky to have a wonderful family to keep me fighting on. That includes my mum, brothers and sisters in the UK who have donated and supported me. ❤️

Mother's Day was lovely with my daughter making a FaceTime call and my eldest son and his son calling in. Simple things, simple times mean the most to me and every minute needs to be of high value. Too much time is spent at clinics, very good and much appreciated clinics with highly trained staff, so that makes time left appreciated so much more. It's got to be not about my disease but more about living the time I have left well 😁.

Enjoying time with our grandson at his home but it is a struggle to get into pools because they make the steps so high and don't like putting rails, kind of spoils the tropical look. However I made it in with my amazing hubby. Got to make those memories good ones.

I'm back after another bucket list adventure, to New Zealand this time. Trying to do all the adventures I can before this monster if a disease stops me in my tracks. I'm "kicking ass at MND". Help me fight back and hopefully put an end to this monster in the future.