Three years ago I was officially diagnosed with MND or ALS which it is called everywhere except Australia. The neurologist told me that day I had 2 – 5 years at best. Yippee!
The ironic part of that is that I had already been suffering symptoms for 18 months prior to this diagnosis. So in all reality you could say I have had this condition for 4-5 years.
So much has changed since then as I have maintained some things but lost others.
To date I now have limited speech, limited arm movement and though wheelchair bound I can walk with the help of a carer or Steve and still negotiating the stairs up and down from our bedroom and bathroom each day.
There are also lots of other challenges that have popped up along the way.
I am still fortunate to be able to travel but I sometimes feel it is like a movie where you see the finished product in Facebook photos but not really see what goes on behind the scenes to get me there. It would not happen without Steve or a carer to help me.
It takes about 75 minutes every morning to stretch me, shower and dress me. Then to breakfast. Before eating Steve puts on gloves and tries to manually open my jaw. The jaw and face have stiffened which affects my speech and swallow. I could only open mouth 25mm, now up to 31mm. The normal jaw opening is around 45mm. This may not seem much but it helps me to eat better . Breakfast can take up to an hour sometimes. I’m pleased to report I’m still eating most normal food porridge blueberries , avocado on toast, yogurt, soup, pasta, frittata, and all other dishes provided no big chunks. I take huge concoctions of antioxidants and vitamins and have been vegetarian for almost two years.
The biggest thing with MND is weight loss and being unable to eat. I’m pleased to say that although I dropped 10kg over one year ago I have remained constant since then.
If you are interested please read on. I thought I would describe what goes on in normal week right now. This can change every few months or so. Remember everyone with MND will be different. No one is the same. Since covid started earlier this year quite a few people with MND have passed away already and most were diagnosed after me.
Why am I still here? I believe my determination and mindset has made all the difference. I’m also on high doses of vitamins and antioxidant, working hard on rehabilitation to stimulate my muscles. Plus the amazing and awesome support from each and every one of you.
When I say I’m doing rehabilitation I am doing more than the normal rehab. I go to Pilates once a week where I have one on one session using reformer and Cadillac bed. I have two hours personal training sessions twice a week, a session with neuro physio, massage once fortnightly.