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Trevorhb
22nd February 2015, 18:31
songs of Praise which has just finished featured Stephen Hawkins first wife and a man with MND. You can see it on BBC iPlayer.

willsandco
22nd February 2015, 18:52
Just waiting for the oscars now. I hope Eddie redmayne wins. His portrayal of Stephen hawking was phenomenal. Joycie

Davec
22nd February 2015, 19:15
Some weeks ago Death in Paradise featured ALS, strange when we use MND, but it was part of the plot

Jock
23rd February 2015, 09:31
A nice touch by Eddie Redmayne dedicating his Oscar to us all.

willsandco
23rd February 2015, 09:40
Yes, John. He has done so much for us all with this film. An exemplary performance, not just by him but the whole cast. I don't think MND is a disease in the shadows now, do you? And nor should it be Love. Joycie

Jock
23rd February 2015, 10:42
I don't think MND is a disease in the shadows now, do you? And nor should it be Love. Joycie

I suspect time will tell on any long-term benefit the film brings to the exposure of MND.

Julianne Moore won Best Actress' for another important condition (Alzheimer’s) in 'Still Alice' so well done to her too.

njm
23rd February 2015, 11:39
songs of Praise which has just finished featured Stephen Hawkins first wife and a man with MND. You can see it on BBC iPlayer.
Trevor:
Thanks. I wonder if MNDA can capitalize on the Oscar theme in 2015. Our next windfall might lie therein but i am not sure how. Aside from Joycie's stroke of brilliance with the Keep It Taped campaign idea.

Charles

njm
23rd February 2015, 12:00
A nice touch by Eddie Redmayne dedicating his Oscar to us all.
Jock:
Given he dedicated it to us I just wonder if we can take this further somehow? I am not sure how but maybe it will reveal itself to one of us in a dream tonight.

Charles

Durwood
25th February 2015, 04:57
perhaps, like the olympic torch, the Oscar could relay between us all from one end of UK to the other...

Trevorhb
28th February 2015, 11:25
The BBC drama Casualty will feature a person with MND in tonight's episode.

Springtime
28th February 2015, 11:44
Well Trevor that is good news it's making more people aware of MND. I know I have mentioned it before but we need more people trained up to go out to schools, workplaces etc to speak about MND. I think people are being diagnosed with other things, especially older people as it is something that could be put down to age when showing certain symtoms. I have always said it is not as rare as we are lead to believe. WHY WE CANNOT TRAIN PEOPLE TO EDU CATE ABOUT MND IS BEYOND MY UNDERSTANDING. It could be done by volunteers. It is being done for Dementia and that is also complicated with many different types. I for one would be more than willing to volunteer to train and do this.

Davec
28th February 2015, 13:14
Love your passion Spring, I have already volunteered to talk to Macmillan, Marie Curie about the 24 hour life of a care
Awareness Can only come from by making people listen, my gym has now people who understand what is happening to Sharyn but are now do charity runs and swims

willsandco
28th February 2015, 13:50
Dave your blog since March 2014 is the best testament I have ever seen to how MND affects a truly loving relationship. It highlights not just the overwhelming love you have for Sharyn but also the genuine love and warmth that has emanated from each and every one of us forumites. Some of the posts have just made me take a step back and realise just how much real love matters in our lives. You are the perfect person to go to and speak to people about the devastating impact MND has on peoples' lives. And the same goes for you, Spring. God bless you both. Joycie xx

Springtime
28th February 2015, 14:38
I agree Joycie, that Dave is a true Ambassador for "from the viewpoint of a Carer". Unfortunately as I am sure many Carers on here will agree because this is an open forum we as Carers also have to be careful that we don't cross the line as many people read on here that are guests. And unfortunately some of those guests can be extremely judgmental and as we can only remain anonymous to a degree we have to be careful. I know of one person on this forum who is a lovely person, and given much support to many. However a member of the public has worked out who the person is and has given much criticism (which one wouldn't expect, but that's humans!!!) The forum member has messaged me and is now reluctant to contribute. Noute so queer as folk is there! X

Davec
28th February 2015, 16:01
Thank you both, I only write what I feel, but your comments make me proud and humble! I intend to shout from the rooftop and be judged, but unless that person wants has stood in my shoes, they do not matter! Judge not less you be judged! So let's concentrate on the good that comes from this forum!

Springtime
28th February 2015, 16:33
Yes Dave I agree people should not judge but unfortunately they do. And I know this person is feeling particularly fragile at the moment and so can't take the NEEDLESS criticism dished out. Take care and more hugs to you and your Sharyn. X

Davec
28th February 2015, 16:48
Now that Spring proves that you should be an ambassador !
Read it to Sharyn who agrees
Xxx

Springtime
28th February 2015, 17:01
Sharyn xxx I would willingly give my time as a volunteer to make more people MND aware but I would need the proper training. So MNDA the offer is on the table.

Trevorhb
28th February 2015, 23:08
Having mentioned a piece about MND was coming on Casualty tonight, I hope you did not find It too upsetting. I thought it was acted well and brought up two important points. Firstly if you cannot speak and have an accident you can be in trouble. Secondly how many doctors, nurses and paramedics know you do not give oxygen to a person with advanced MND?

DaiTheDragon
28th February 2015, 23:24
Considering the advanced stage he was in I dont think the breathing and talking issues were emphased enough.
David

Trevorhb
1st March 2015, 10:29
I am surprised the piece about MND on Casualty last night has not promoted more discussion, that is assuming many of you watched it?

pete
1st March 2015, 12:36
Trevor,

To be honest most soaps don't really do much for me, so I avoid them like the plague ,the fact the theme of soaps in general if fiction ,though some think they are real life, I will be really excited when MND gets real and accurate coverage on Panarama or similar then we may reach those who are blissfully not aware of the condition.

Rachel
1st March 2015, 13:14
I watched as mnd was featured. I'm glad I did as I thought it was excellent covering important issues about this wretched disease and raising awareness. It sensitively touched upon the pressure on carers, the right to die, despair of living with a life lost and not wanting to be part of support groups. I thought the analogy of having mnd being like living in a room with no doors and windows with the walls moving in, was very moving and powerful. I also liked the fact they tried to show that with thoughtful care, knowledge, consideration, respect and most importantly love, then life can be worthwhile and meaningful. I agree that breathing and talking issues were not sufficiently covered, but thought the Casualty team did an overall good job.
PS... also like the bit about how Prof Hawkings' story can skew people's understanding of mnd.
Rachel

Trevorhb
1st March 2015, 13:42
Agree Rachel, for a one off piece it was well thought out and very well acted.

pete
1st March 2015, 15:51
Hi Trevor ,

Just watched the episode, and it's good news as I might not have MND after all, my seven years bore no resemblance to that portrayed so will ring the QE first thing to get re diagnosed,if anyone else found a comparison would really like to hear from them.

Terry
1st March 2015, 21:38
Hiya El Pete,

That ones a bit harsh don't you think, Trevor was only commenting on the program, has someone upset you matey ?

Regards

Tell

PS:- WSB was good

pete
2nd March 2015, 09:51
Morning Terry,

No no ones upset me ,I watched casualty and saw nothing that my own experience with MND came even close too, we all are entitled to express our views ,firstly six years with no speech ,and gradually feeling your body become turn into a unresponsive wasting flesh,legs that feel like lead,fingers that no longer respond ,choking on saliva and druelling constantly and Not being able to communicate with any vocal ability ,here we had a chap with symptoms of COPD wanting to self harm but still able to converse well ,without any need for any help or iPad , quite why any one of us would want to tip a hot drink onto our arm and more delicate areas escapes me, and to have a doctor who gave so much attention and concern ,who listened to the patient saying the room had no windows or doors and the walls closed in on you ?? ,perhaps some other members will post their views ,but for me ,not being able to speak is one very major issue ,being in hospital would be my nightmare ,as I never found some staff listened to you when I could speak, and I guess Graham's experience of Hospital care ,had a impact on my response . Sorry I had no intention of offending Trevor and doubt if I did due to no response to my comments.
Any way you have a good day
Pete

Ps didn't see the bikes ,I was painting the garage.

Trevorhb
2nd March 2015, 10:42
All I would say is people watch Casualty for the interplay between the characters rather than the accuracy of the medical plots. It is very difficult for a programme which runs several one off plots each week, on the whole I thought they did well. I had a look and made a comment on their Facebook page and found as I said most comments were about the characters rather than about the medical side. Any exposure to the public about MND must be good.

Terry
2nd March 2015, 11:35
I never said that I disagree with you Pete Mate;

Just wanted to use the same phases that you sent me as I found them amusing.

I do agree that most of us have much worst symptoms than that man, and his problems seamed quite isolated and dare I say it, quite minor compared with some of us.

You have some of our members thinking of doing a similar thing but their situation is so so much worse. It would have been better to show an actual person or one with little quality of life unlike him.

Regards Terry

Regards Terry

Jock
4th March 2015, 21:38
Weds 11th March 7-8pm CH5.

Filming My Father: In Life and Death:

In 2010, Steve Isaac was a fit 51-year-old father of three when he was diagnosed as having motor neurone disease and given two years to live. This film, to which his 22-year-old son Fraser contributed footage, documents the details of Steve's progressive condition and the decline in his health as muscles wasted away, as well as revealing the effect it has had on his family, who have been pushed to the brink by his desire to live at almost any cost. Four-and-a-half years on, Steve has defied medical expectation, but his only method of communicating now is blinking.

mik
4th March 2015, 23:34
Weds 11th March 7-8pm CH5.

Filming My Father: In Life and Death:

In 2010, Steve Isaac was a fit 51-year-old father of three when he was diagnosed as having motor neurone disease and given two years to live. This film, to which his 22-year-old son Fraser contributed footage, documents the details of Steve's progressive condition and the decline in his health as muscles wasted away, as well as revealing the effect it has had on his family, who have been pushed to the brink by his desire to live at almost any cost. Four-and-a-half years on, Steve has defied medical expectation, but his only method of communicating now is blinking.

this is program i want to watch,although i know its going to be hard viewing. especially hard for us with MND it will be like watching our own lives. think i might have to record it and watch alone. one thing in the synopsis i dont like is the line about his family who have been pushed to the brink by his desire to live at almost any cost. to me it sounds like the family would rather him dead for their own good health! i'm sure they dont but it sounds awful to me.
mik

Springtime
5th March 2015, 11:08
Thanks for putting this on here Jock. Mik, I think you are very wise to record it and watch it on your own, it sounds quite harrowing. I wonder if the family have found it just to difficult seeing him suffer so much in his desire to live, also possibly if they are only a very small family and are being honest enough to admit how difficult it is for them to cope with the stress and attention they must dedicate to him.

Jock
5th March 2015, 12:57
One minute preview -

https://www.youtube.com/watch?v=AjXou_9YLIk

Trevorhb
5th March 2015, 13:06
Thanks Jock, sounds good. Mnd is certainly getting some air time lately.

willsandco
5th March 2015, 13:32
and not before time, Trevor! It is amazing how many people still don't know what it is all about. I know it manifests itself in so many different ways but the more awareness the better! So many people think, because Stephen Hawking has survived so long, that that is the norm when we all know that is definitely not the case. And thanks, John, for posting that! Love to all Joycie x

Trevorhb
7th March 2015, 22:38
The MND patient has appeared on Casualty again tonight.

Terry
7th March 2015, 22:47
Oh dear Trevor;

I'm in trouble as I didn't record it.

Jock
11th May 2015, 08:47
The subject of MND popped up in Inspector George Gently - none too kindly I might add, but the programme is set in the late 60s.

http://www.bbc.co.uk/iplayer/episode/b05twg2n/inspector-george-gently-series-7-2-breathe-in-the-air

willsandco
11th May 2015, 09:25
I saw that, jock, and it set me back on my heels. There is no way that would have been broadcast these days. Xx. Joycie

pete
11th May 2015, 14:33
Hi jock,
That's one of my favourite programs on the box, and it has two of the best actors starring, the year was 1969 the year I married the bride, and much like the program I used to work in garages where brake drums off vehicles where blown clean with airlines the cloud of dust in the air could be seen and tasted ,it was general practice at that time like so many other things now. We know differently now but I wonder how many died because of ignorance of the dust that was so toxic ,like many other jobs in the sixties health and safetŷ was not even heard of unlike now where it's taken to extremes.
Just wondering how many folk diagnosed with MND in 1969 waited in vain for a treatment that was going to happen in a few years, nothing's changed has it !.

miranda
11th May 2015, 18:07
I know that in the 1960s, I for one did not understand about using p.c. language. Did anyone else notice the reference to MND as that motor racing disease? Even though I am now more p.c., this did make me laugh!!

willsandco
11th May 2015, 18:51
It set me back on my heels really, Miranda. I just thought it was a thoughtless and irreverent remark but then the character was portrayed like that, wasn't he? On reflection, I wish that racing was the word and not neurone - would make life much less complicated for us all, wouldn't it? It makes you realise how much has changed over the years Love. Joycie. Xx

pete
11th May 2015, 19:40
I know that in the 1960s, I for one did not understand about using p.c. language. Did anyone else notice the reference to MND as that motor racing disease? Even though I am now more p.c., this did make me laugh!!

Hi Miranda,

Yep me too, sorry Joycie, but given the times ,at least as I can remember ,I had never heard of MND at nineteen so I wouldn't have given it a second thought, only when you have the misfortune to be diagnosed with MND does the severity become clear, I can remember cancer though my mum died shortly after I got married ,that's a day I will never forget.

GrannieAnnie
11th May 2015, 19:44
I don't know where to post this really but its good news. My son in law ran in the London Marathon for MND and as he is nearer 50 than 40 and it was his first full marathon he did it in a time of 3hours 41 minutes and the good news is with all the online sponsorship, including gift aid and the cash and cheques he has still to bank we have made nearly 6,000. That is good news!! The MNDA put on a reception for the runners and their supporters and arranged massages for the runners - they did a splendid job. It was a great day out. Ann x

willsandco
11th May 2015, 20:42
That is wonderful news, Ann. For general information, there is a video going around showing all the MND runners during the race and it shows monty clearly. It was put on facebook by a lady called sue Morris but I can't find it now. I am so pleased you had a wonderful day. My great niece and great nephew are running next year for MNDA so that is good news! Many congratulations, monty.
Six thousand pound is magnificent! Much love. Joycie. Xx

miranda
13th May 2015, 12:20
That's an amazing amount to have raised. Pass on our thanks please.

Ellie
3rd June 2015, 14:26
One for the planner. Stephen Hawking, BBC 1, 15 June.

http://www.theguardian.com/science/2015/jun/03/stephen-hawking-i-would-consider-assisted-suicide

pete
3rd June 2015, 15:58
One for the planner. Stephen Hawking, BBC 1, 15 June.

http://www.theguardian.com/science/2015/jun/03/stephen-hawking-i-would-consider-assisted-suicide

its stored Thank you

pete
XX

Barry52
3rd June 2015, 18:29
I will watch it but I don't believe politicians have the guts to get behind Lord Falcolners Bill. I appreciate not everyone holds the same view as me and as long as can eat and draw breath I will continue to fight MND.

Barry

Terry
3rd June 2015, 18:33
Thanks Chimp, love Terry

pete
3rd June 2015, 21:32
I will watch it but I don't believe politicians have the guts to get behind Lord Falcolners Bill. I appreciate not everyone holds the same view as me and as long as can eat and draw breath I will continue to fight MND.

Barry

Barry, I know of one who shares your view,

Pete

Jock
4th June 2015, 14:22
I'm looking forward to the programme even though MND may not pop up much. I'm a humanist and our Patron an atheist.

Jock
17th June 2015, 08:31
DIY SOS on BBC1 tonight involves a chap with MND and Fabrys disease - which causes a build-up of poisonous toxins in the body. 8pm.

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