Gransnet forums

Health

update on my motor neurone disease

(30 Posts)
willsandco Thu 09-Apr-15 16:31:53

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

harrigran Thu 09-Apr-15 23:56:34

So good to hear from you again Wills, I was just thinking about you because I knew it was almost a year since you married. Happy Anniversary for this weekend, if I remember correctly, wishing you a wonderful day wine flowers

absent Thu 09-Apr-15 23:19:12

Good to hear that the past year has been such a happy one. May you find more happiness in the time ahead.

Soutra Thu 09-Apr-15 22:52:16

Lovely to hear from you and congratulations on your Wedding Anniversaryflowers As others have said, you are truly an inspiration to us all, warmest wishes to you and your lovely man! More flowers wine and sunshine

moomin Thu 09-Apr-15 22:43:42

What an inspirational post Joycie, you have such a positive attitude and I hope you and Peter continue to enjoy your honemoon for as long as possible.

MiniMouse Thu 09-Apr-15 21:08:01

I can't believe it's your anniversary already! So glad to hear that you're enjoying your travelling adventures. flowers to you and Peter and a very sunshine summer!

shysal Thu 09-Apr-15 20:53:11

You are amazing Joycie, an inspiration! I think of you often. sunshine flowers

ffinnochio Thu 09-Apr-15 20:12:48

Joycie - Thank you for the update. I am so pleased you've had a wonderful honeymoon year. You say every day is a bonus......so I wish you many, many more. sunshine flowers

glassortwo Thu 09-Apr-15 19:36:37

Wills its so good to hear from you. I have thought of you often over the last months, wishing you and Peter a very Happy Anniversary wine sunshine sunshine sunshine flowers

Anne58 Thu 09-Apr-15 19:28:49

wills as others have said you are an inspiration, and prove that sometimes the best people get dealt the worst hand.

Much love to you all, now and always, R.

Lona Thu 09-Apr-15 19:23:13

Joycie Enjoy your Anniversary with your wonderful husband, and thank you for keeping us in the picture.
You seem to be as joyful as your name suggests, and I wish you both continued happiness together.
flowers

Agus Thu 09-Apr-15 19:14:32

You are such an inspiration and a welcome breath of fresh air Joycie. A very Happy Anniversary wish to you and Peter and I hope you both share a summer of sunshine and contentment. flowers

Galen Thu 09-Apr-15 18:58:57

I do hope you've applied for the appropriate benefits.

Marelli Thu 09-Apr-15 18:54:28

Thank you, Joycie. You truly are an inspiration and the love and happiness shines out of your post. Happy anniversary to you both.flowers xx

baubles Thu 09-Apr-15 18:30:21

Lovely to hear from you again wills thank you for updating us. Wishing you a peaceful summer.

Happy anniversary to you and Peter flowers.

loopylou Thu 09-Apr-15 18:21:50

You're a truly inspirational lady, bless you. Many best wishes to you both and hope you have a lovely summer, flowers x

tiggypiro Thu 09-Apr-15 18:12:04

You put me to shame Joycie. I promise not to moan about my sciatica again. flowers for you.

merlotgran Thu 09-Apr-15 18:03:55

Your courage is amazing, wills. Thank you for telling us all your news. Hope you also have a blessed and happy summer XX

rosequartz Thu 09-Apr-15 18:01:08

Happy Anniversary willsandco and Peter flowers

and I hope you continue your honeymoon with much enjoyment

KatyK Thu 09-Apr-15 17:57:51

What a wonderful woman you are. It is lovely that you posted. All best wishes to you both.

Mishap Thu 09-Apr-15 17:51:31

Happy Anniversary indeed - it is lovely to hear from you. It sounds as though you have had a wonderful year - full of family and friends - just what we all hope for. flowers

Stansgran Thu 09-Apr-15 17:45:05

flowersthank you for your update. Happy Anniversary. I remember you looking for a special dress.

numberplease Thu 09-Apr-15 17:29:51

Hi Joycie, you are a wonderful example to many of us, you make me feel ashamed of some of my griping. All the best to you and to your Peter, and a Happy Anniversary when it arrives.

annsixty Thu 09-Apr-15 17:27:47

So pleased to hear from you again wills and you still are so positive it is a joy to get your posts. I hope you carry on enjoying life and you know all our blessings and good wishes are with you.flowers

Greenfinch Thu 09-Apr-15 17:02:42

Thanks for writing wills.You are an inspiration and although I am sure you must have down days, you write as someone very much at peace with yourself. Continue enjoying your "honeymoon" flowers

Ana Thu 09-Apr-15 16:59:23

What a positive post, willsandco! smile flowers