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willsandco
14th March 2015, 11:26
Hello all

It is calendar year now since I was diagnosed with bulbar onset and almost a year since I composed my first post

I just wanted to thank each and everyone of you for your support and your kindness to me over these twelve months. I always tell everyone that this forum has taught me so much, about people living with MND, about people living alongside it, about the everyday concerns there are......plus the fun, the friendship, the fellowship!, It is my lifeline!

I have walked alongside those who are caring for loved ones and alongside those who have lost loved ones and the process has made me very humbled and much more aware of my own mortality.

I have read and re read comments about the way forward, with the PEG, the BIPAP, about mobility issues and so many other things and have picked up so many tips and techniques.

I have always been optimistic and stoic but that is my makeup. But who knows what I will be like when it does eventually kick in, Not at all sure about that but what I do know is that I am certain that you will all be alongside me, with your hand on my shoulder, guiding me home.

I don't think we all realise just what a special, incomparable set of fellows we all are, looking the Grim Reaper in the face everyday. The MND forum must be unique.

Whoever you are, wherever you are, individually and collectively, you are all very precious to me

I couldn't get by without you.

So I just wanted to say thank you, very much indeed


Much love

Joycie xx

Springtime
14th March 2015, 12:12
And Thank You for all that you have bought to this forum and for being you.
springtime x

Ellie
14th March 2015, 12:13
Joycie,
Quite simply, the forum is enriched by your contributions.
Love Ellie xx

Trevorhb
14th March 2015, 12:35
That is our pleasure Joyce,and thank you for your friendship

Pam S
14th March 2015, 13:49
I have only been on here a short time Trevor but you and the other lovely contributors have made me feel that we are part of a family for which I thank you all xx

Davec
14th March 2015, 13:51
You are our pleasure xxx

ccinjersey
14th March 2015, 16:26
Friendship pacts and Hellebores, fighting spirit, and positive state of being Joycie :)

Much love
CCxox

Barry52
14th March 2015, 16:31
I have the privilege of knowing Joycie personally and she is a true inspiration in how to deal mentally and emotionally with this disease.
Thank you Joycie.

Pam S
14th March 2015, 16:51
Joycie I have only known you a very short time but I feel your support and respect your friendship, long may you hand out your wise words, you are truly a courageous and very special lady. Pam S xx

BlueEyesOhio
15th March 2015, 01:28
Joycie,
Much love to you, Joycie!! I have learned much from your excellent attitude. And all our "forumite family"

Actually we all are an "incomparable set of fellows"

Lynne

Bilando
15th March 2015, 07:32
If you fight MND like you fought the MOD Joycie you will outlive us all ! Your special ! Ian x

willsandco
15th March 2015, 08:01
Oh Ian, I haven't finished with them yet! I can't get Bills pension reinstated because I gave it up "voluntarily". There was nothing voluntary about it. Mod pensions service told me over the phone and in writing that if I married or co habited without telling them I could be arrested and could face imprisonment for fraud. I was post diagnosis. I thought I had enough to cope with. On reflection, I should have done it But, hey ho, you win some and you lose some. But I haven't finished yet. I got a lovely communication from Royal British Legion in the week saying how much I had contributed to the appeal, that they would always be so grateful and I should be very proud. Well I am! I have had messages from widows all over the world. But...it ain't finished yet! Not until the fat lady sings!! And I was a fat lady but MND has seen to that and I have lost two stone - and I can't sing cos MND has robbed me of my voice. But this affliction brings its own rewards sometimes. - I think perhaps people do pay more attention because it is out of the ordinary! So the fight goes on Hope you are well. So lovely to hear from you. Joycie x

Night walker
15th March 2015, 09:24
Joycie,

Love having you as a friend here and FB, love all your stories and your ability to push for what is right. We are coming closer to,our 1st year on here and I value all the friends I have made on here too. Such a wealth of experiences on here going back years, not sure what I would do without you and all the others on this forum.
Keep fighting and supporting your boys at rugby.
Sylv xx

willsandco
15th March 2015, 10:30
Sylv, thanks so much. I hope you are having a really special Mothers Day. I am. My daughter has bought me the most beautiful bird table - shaped like two hands with a stone blackbird on it! She knows how I love my garden - and I must say Peter does now! Well, he has to because is Chief Bird Seed Feeder, Chief Bird Bath Filler Upper, Chief Garotta Compost maker sprinkler! He never bothered with the garden till I got "wobbly like a weeble!" but I think he enjoys it now! I follow him around with my three wheeled rollator and boss him around! There are so many pairs of birds getting cosy out there these days - he even drew up a chair and watched yesterday! Hope he doesn't get any ideas! Ha! Ha! xx

willsandco
15th March 2015, 10:32
Oh, Sylvia the rugby was really special yesterday I was right on the edge of my seat watching them! It was the most exciting match I am going to watch it again on play back today (without all the anxiety!) Marvellous. xx Joyciexx

Nettie B
15th March 2015, 12:49
Joycie I have no idea how you have kept so positive. I can't and I'm "just" a carer. My emotions are daily all over the place with the responsibility and worry but mainly with the difficulty in communicating with my husband. "Well done" you and "well done" Peter. XX

willsandco
15th March 2015, 13:10
We have our off days, Nettie, believe me! I expect him to be all singing and all dancing and multi tasking but of course he is the wrong gender for all that! Ha! Ha! I was a complete whirlwind before and now I wobble around like a weeble. But at least I do have the sense to stop and rest I am far more emotional than ever before. Today's Mother's Day has nearly done me in with cards and presents. - and beautiful words ! Plus six years ago, my husband died on Mother's Day which was also his birthday and our younger daughters birthday. Some sense of timing that was! I am lucky with Peter because he is full of fun, always singing, always laughing. He tells his corny jokes to all the medical ptofessionals we get here - I wonder they have not stopped coming! But we get by. Some days are worse than others, aren't they? But I have just learned to gradually accept things and that has helped. Riser recliner on its way and we are ordering a motorised scooter. I always said I would cope as long as I could. Well, I can't walk as well now and so help is on its way Wish you were both nearer. It would be so good to pop in and see you. Love. Joycie xx

Davetherave
15th March 2015, 13:46
Hi Joycie

What a lovely post, you have brought much positivity to the Forum.

Kind regards, Dave..

willsandco
15th March 2015, 13:59
thanks, Dave. I have always been positive. I had some marvellous jobs, national and international, and was imbued with passion with each one of them. I found it to be infectious. Each was award winning and morale was sky high in them all. I think I treat MND as the imposter it is. I know if I rise above it, I will cope. If I dip my head under the parapet, I will be defeated. Nothing can stop its relentless deterioration and I can't tell you now how I will be when the end gets nearer. But, for now, it is just a blooming nuisance. It stops me getting on with a normal life. For example, in the garden today, I couldn't stand up long enough to take the top of the compost bin today - and that was me hanging on to the rollator! Who the heck goes gardening with a rollator? Sometimes it all beggars belief, doesn't it? So, for now, positivity is the order of the day and when that isn't possible, I will be here seeking it from this forum!! Joycie xx

Pam S
15th March 2015, 19:41
Joycie, you and other members have already inspired me, not to take on the negativity of doctors etc., but to fight for the right to be heard and to be listened to, and hopefully my husband will receive the help and advice he requires. A big thank you. Pam xx

willsandco
15th March 2015, 19:50
To be truthful, we have never found our specialist to be negative. She was wonderful on diagnosis, sensitive and kind, but what can she say? There is no cure. That is that really. She can only ask her team to set up a comprehensive care and support package, which they very quickly did. Every medical professional we meet is upbeat and really, really helpful. I consider that, here in Lincolnshire, we are really fortunate to be living here. Not everywhere in the country is the same. I just hope you get some answers from Sheffield that are helpful to you. You would be a lot more settled then, wouldn't you? Love joycie xx

Pam S
16th March 2015, 08:55
Hi Joycie, for the first tine in 2 years Dave thinks he is being listened too, our own GP has been most supportive in having a second opinion, I will keep you updated. Pam xx

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