Well, a year ago to the day Leanne and I were having adventures and making memories in New York, USA. This year we are doing the same….just in Brisbane, Aus. What a year it has been!!! As Leanne’s longest carer we have been reflecting on the year past and the hurdles faced, and achievements made.
Leanne continues to defy the odds and is kicking MND’s butt fair and square! For most of us there are often some physical declines over the course of the year, however there are also great achievements made.
While Leanne has had some struggles with her neck strength, which in turn has hindered her walking, with the help and guidance from her amazing and supportive rehab team, Leanne has been working tirelessly doing many and varied exercises to improve the strength in her neck. It is safe to say that it is working! Leanne’s determination is paying off and all of us are noticing a marked improvement!
There has been a slight loss in muscle mass and we also have specific exercises to target this issue.
Leanne’s speech has declined over the last 18 months, and although the eye gaze is an amazing form of communication, it is not always around, and Leanne still communicates with us through spelling out the words, going through a checklist of what could be needed, and of course her eyes!! They speak volumes!
One thing that has not changed is her appetite! This woman loves her food, and her daily diet consists of porridge with berries, yoghurt, avocado on toast, eggs, salmon and potato pie, soup…the list goes on. Leanne is also taking some amazing supplements that Steve has researched extensively and help a huge amount.
There are many aspects to Leanne’s journey to recovery; massage, pilates, chiropractor, speech therapist, personal trainer, hand therapist. We also have a busy ‘at home’ program consisting of focused walking, balancing, tens machine use for all areas of the body, arm exercises, leg exercises and much more.
In recent weeks Leanne took part in a sleep study at Prince Charles hospital, Brisbane. An oxygen mask was put on and she was wired up to monitors that were looking at her brain waves and movement in her body throughout the night. This wreaked havoc for her nerves, and to a degree, still is, and as a result Leanne was in a lot of pain, with her jaw locking and cramping all over.
The positive news out of this is that she does not need an oxygen mask at night as her breathing is good, and we are working on releasing the jaw a bit more and loosening her hips and other parts of her body.
Leanne and Steve love to travel, and even with the odd year that was 2020, managed to get to Magnetic Island, Cairns, and home to Melbourne. I was lucky enough to join them on a couple of these adventures and we have another one coming up…. Stay tuned!
When Leanne asked me to work alongside her, she said, “This role is not for the faint hearted”, and as I near my two years of sharing this journey with Leanne, those words couldn’t be more true. I wouldn’t have it any other way though!
Leanne continues to push herself and those around her to be the best version of themselves possible. Pushing boundaries and knocking them out of the park.
This woman is UNSTOPPABLE!
Enjoying life!
