Making memories for our young family as we live with Motor Neurone & Fabry's Disease

MND awareness month 2019

June 1st, 2019

MND month blog 2019

Well I for one am excited, this marks another MND awareness month.  I appreciate that not everyone will have this view but if every day is a gift like me, then another year is something like a miracle. It goes without saying that I would prefer we didn’t need an awareness month, because it had been eradicated but unfortunately not at the moment.  Since the last awareness month many people have suffered and lost their battle with this disease, I for one would like to pay my respects to all of them.

My year has been by comparison to previous ones a little quiet, only managing to dangle from a long rope down a large big hole.  However we got an inside out programme out of it so some awareness was raised.  My other event has proved slightly harder than we expected so will be aiming for it to happen in July or August this year.

Last year I said MND Must Not Die and I still say that, I must see a cure; I have so much I want to do, despite slowly deteriorating.  So I now have a new MND phrase, Memories N’ Dreams, because quite simply your memories from the past become your future dreams.  I have fond memories of our trip to Disney world but to ever go there again would be the stuff dreams are made from.  I remember walking with Lilly but that is a dream now.

As life ticks over so does my ability to adapt, you think you can’t possibly find another way to do the task you could do last week but you do, this I just find incredible that despite all that I and every MND  victim has gone through, the human body is just simply amazing. I often wonder why if it can mend bones, fight off viruses and heal wounds, why can’t we cure this? Maybe the answer to unlocking some of these diseases might actually be a lot easier than we think, I know that you think the scientists and Doctors would have thought of this but have they?

Finally I feel it’s only right to give a brief outline to my progression of the disease.  So in the last year to be honest there hasn’t been any significant decline.  I believe this year will see transition from voice to synthetic voice mainly because now my speech is that bad even my wife Liz is struggling to understand me , but as my voice has been in decline for 3 or 4 years, I feel I am as best placed and prepared as I can be. To make the move.  My breathing is hanging on despite everyone’s best efforts to get me on my ventilation machine.  But again this is likely to change this year, if so then it will be a tracheotomy. Movement has steadily declined with slight movement in lower limbs, with enough movement in my top half to allow drinking, eating if feed, drone flying and using my mouse and wheelchair. My neck is starting to drop so I am currently adding in a head up collar when my neck becomes tired. I have mentioned that we continually need to adapt and one massive area is my chair, this year has seen new seating in my normal chair and a leave in sling and lateral supports.  My off road chair is the head ache as it is a normal seat, but I will cover this in another post. I have included a couple of pictures for your amusement, you may notice I now have two bottles, one hot and one cold, I am continuing to search for the best drinking position, mainly to avoid chocking.  I have added a clock to, obviously to tell the time but also set a timer to remind me to empty my catheter bag, lol.  Finally this is not an assistance dog, it is Popcorn actually doing what she was asked to and sitting down, wonders will never seize to amaze me.  Beagles for you! Notorious for their ability to be naughty and do nothing you ask of them, sounds like the rest of our family.

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