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

What’s next?

August 11th, 2017

Well after Mt Snowdon you would think some rest might be in order, errr no.  Planning for the Humberbridge abseil is well on the way for 10thSeptember.

Meanwhile my health continues to deteriorate at a slow pace, of which I am grateful for as it gives me time to plan for the future, whether it is an adventure, trip away or even the next step in keeping me alive in the way of a tracheostomy. My breathing has got worse at night, I use a none evasive ventilator for around two hours when I can tolerate it.  The crooks of it is I simply hate it, stick your head out of a car window at 60 mph and that’s a fairly reasonable description. I use my nebuliser daily and the same with my cough assist. These help keep my lungs clear and expanded.  As my diaphragm weakens I will need more help breathing. I have now been approved for an elected trachy.  This I have to say doesn’t faze me, it’s more the constant supervision I will need.  I have briefly asked other treachy users a few questions but they lead to more questions lol.  So when I meet the ENT dude/dudette I will go armed with a list of questions.  I think my biggest fear is how much it will stop my antics. Although as you may have gathered, pushing the boundaries of what is possible is my job in life. Also I am having more choking episodes so the bulbar symptoms are showing.

Mobility wise again things get worse, prolonged time leaning at my pc causes neck trembling.  We have now decided a spinal neck brace is the way forward when in the 4×4 wheelchair and a slightly less intrusive model for the pc when needed.
I still attend the gym twice a week and hydrotherapy if I have the time lol.

We are camping next week, yes camping, all be it in a pod which is basically a wooden tent with a concrete floor.  It’s the first time we have been since I started to suffer with mnd (knowingly). We are of course taking all the medical equipment including the hoist, should be good and relive memories and make new ones as we are going to where we got married and it is our anniversary.

I have to say despite all that that is thrown at me I still love life, enjoying new experiences and meeting new people.

Please keep your eyes on our Humber Bridge abseil page for event information as it unfolds and to bid on a chance to abseil yourself of the bridge

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