Hello all. It is almost a calendar year now since I got married to Peter, and over a year since I was diagnosed with bulbar onset MND. So many of you were so kind to me over that time that I promised that I would write regular updates.
It is beginning to bite now. My voice has gone completely. I rely on my IPAD with my text to speech application to communicate with the world. I have had to get a rollator (with a seat and a bag and a bell!) and I rely on a wheelchair and a motorised scooter. My mobility is shaky, and my balance is all over the place. I find it difficult to stand up for long, or to pick things up or to reach out for things. I can only eat pureed food now and have a feeding tube fitted in readiness for when I cant swallow at all. All the normal things we all take for granted.
But we are not downhearted or depressed. We have spent this year travelling over 3000 miles around the UK visiting family and friends and special places. In truth, it has been like one long honeymoon and we have had a marvellous time - one of the happiest in my entire life
MND is here. It is an uninvited guest and we just have to live with it. I have friends around the country dying every week with this disease. It is a grim place to be but we have the mantra that we are living with MND, not dying from it. Every day is a bonus and we intend to live it!
Wherever you are, I wish you a blessed and happy summer
Much love
Joycie xx
and blessings. You are an inspiration wills. Keep strong and live well. (((hugs)))
for you, Joycie.
just for you.
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