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eshep
2nd June 2011, 10:45
Just thought I'd post to say that Chris Broad is talking on This Morning (ITV 1) at 11.30 today. May be interesting to watch and good exposure for MND.

Being a student again has allowed me to watch too much daytime tv!

Emily

G60dubber
2nd June 2011, 11:51
Just watched this, very poignant. I fully respect the bravery that Miche showed in taking this decision and the role that Chris played in accepting her wishes. It is beyond comprehension the feelings they must have experienced during such a difficult time.

I hope this does a lot to assist awareness for the cause and the impacts it has on patients, family & friends. It's disgraceful that English law prevented him being present during the final stages of her life.

ashfieb
2nd June 2011, 14:39
This Morning Chris Broad speaks about loosing his wife to MND http://bit.ly/jxmtdx

sarahezekiel
3rd June 2011, 23:37
I found it difficult to watch. I remember feeling so scared of becoming disabled and 'losing my dignity'. But 11yrs on I realise that it hasn't been as awful as I expected and I've had wonderful experiences during these years. I was really at the depths of despair and wanted to die. But things got better. I have a real problem with the issue of assisted suicide. I worry about newly diagnosed people seeing interviews like that and thinking that suicide is their only option.

Sarah

Vane
4th June 2011, 10:54
Hi there,
I guess the good thing about the interview on this morning was raising the profile of MND but it made me cry and actually I felt quite scared about the future for most of the day which I try to not be most days. Your comments, Sarah, are so positive to hear - personally I think I will battle right to the end and to hear that you have managed to cope with it and at times not as bad as you dreaded is so heartwarming and inspiring. Thank you.
Would love to talk to you sometime if that were possible. Vanessa

sarahezekiel
4th June 2011, 13:47
Hi Vanessa

It made me cry too, but only because I realised that I would have missed so much if I had made that choice. I wasn't able to use my hands within a year after diagnosis. I needed help with everything. I don't feel that I've lost my dignity though. I still have bad days, of course, but I'm so pleased to be alive.

I'm happy to talk to you. I'll message you now and give you my email address.

Sarah

G60dubber
4th June 2011, 14:11
I hope people would not take from interviews such as this that assisted is their only option, I feel that it should be openly discussed so people can make informed decisions based upon their individual circumstances. Sarah's insight and experience is invaluable to us all in view of the length of time she has dealt with this and how she's managed to maintain a positive outlook for much of the time.

I'm not advoctaing these decisions are right or wrong as it is for the individual to decide, however everyone has different tolerances of changes and acceptance and we must be careful to respect choice. No matter how postive you try to be there are always those underlying feelings that undermine it, everybodies ratios will be different which will ultimately affect decisions.

sarahezekiel
4th June 2011, 14:42
I agree with you. But why do we only see these stories in the media? Chris Broad said that MND is a death sentence and made it sound as if his wife had no choice or hope. There is only no hope if you're dead. I just object to the media only being interested in assisted suicide stories about mnd. How about a program showing Patrick Joyce's work? That would show viewers the reality of mnd and that death isn't the only option. National TV would never be interested.

Sarah

indiesue
4th June 2011, 15:23
Hi Sarah,
Thank you for your words of comfort i have been in the depths of despair for about 2 weeks, i think some of it is down to the fact i am newly diagnosed (march this year), i have had to give up my job which i loved of 20 years, and given up driving. I watched Chris Broards interview at a very bad time and while i think the broards have been extremely brave and i respect her decision, and although i am down at the moment reading these threads from you sarah has given me some hope that things are not as bleak as perhaps we think at times. I love life and my family and i certainly don't want to miss out on their developments and adventures that they are about to undertake, and who knows they may have a cure just round the corner.
Thanks again Sue xx

Vane
4th June 2011, 16:43
Im being a dunce but cant work out how you pick up messages from the forum. somebody tell me please!! vanessa



I've posted a reply to this on the next page. MikeFD.

Ange M
4th June 2011, 18:47
Every one has their own thoughts on assisted, and yes the interview made me cry. However it is good to that you guys out there are strong!

Steve asked me to help him after his diagnosis and I said I couldn't and I asked him not to ask me again to do that! Was I being selfish not to???
After a while it got to where we were going to fight this to the very end,he would tell me it wasn't going to get the better of him, life so as it was, was worth living and enjoying, even though on a couple of occassions I had to fight hard to stop him, throwing himself down the stairs.
When questions were asked when he was admitted into hospital, his wishes for the end,he would never answer them as he was going to fight it to the bitter end.
He did he was still fighting, they came that day to assess him to be transferred to home after a long hard month of fighting, unfortunatley he didn't get home and I felt I had broken my promise, as I fought with him all the way

Every day is worth living !!!

My love to you all, I'm now fighting with you
Ange

computatec
5th June 2011, 15:11
I have decided to hold on to this thought:

"It aint over till it's over"

Attributed to Yogi Berra, a baseball coach who taught that one must keep playing till the final whistle and not give up when the game seems to be lost.

blackcat
5th June 2011, 17:15
On 6 Jun 2003, 8 years ago tomorrow, my husband was diagnosed with MND. From the start, we made the decision to live life as fully as possible, and even though he can't walk, talk, eat or speak now, his life is so precious to him and he still enjoys it hugely. Three years ago, we were blessed with our little boy and have enjoyed him ever since. We have down moments, but I personally have never looked at MND as a death sentence, but have tried to maximise what we've got. I look back over the last 8 years and I am so proud of Ned, of his determination and his will to live. MND is a dreadful disease and we both understand that everyone will be different in their outlook, and whatever decision is made, it is a brave one. From our perspective, I look back and cherish the wonderful times we have had, and I look forward to more of them. Ned still has his interests and enjoys doing things. We have great conversation - he uses a perspex spellboard - we are all so quick at using it that the conversation always flows. Without rabbiting on too much, I'm so greatful that he is still here, and so is he. It is a poignant day tomorrow and I think back to 8 years ago, and realise that it was not the end for us. We have had our battles, but got through them, and neither of us will ever give up.

G60dubber
5th June 2011, 21:29
It's relly good to read from Sarah, Ange & Blackcat about how they fought/ still fight to enjoy life and not let it beat them down. It's heartening to read this and gives inspiration for others when those 'I really feel sorry for myself days' occur.

MikeFD
6th June 2011, 00:50
Hi Vanessa

The 'Notifications' tab at the very top of the page indicates if you have unread messages waiting, assuming that you are fully logged in (username and password etc.). Click on the tab and a drop-down box will appear - click on the 'inbox' link to take you to your Private Messages.

Otherwise, to pick up a message just scroll to the top of the page and you'll find the heading 'Private Messages' just under the big blue 'FORUM' button on the left hand side. If you click on this heading your Private Messages page will open, usually in the inbox, and you should find all the messages that have been sent to you listed there by subject line.

Click on the subject line of the message you wish to read and the message will open to show its content in a new text field. Follow the instructions on page if you wish to reply, or click on the 'Send a message' button on the left hand side of the page if you wish to set up a new message of your own to another forum member. Experiment with it as much as you like - practice makes perfect - to talk to other members, and don't worry . . . you won't break anything!

If you're still having problems, don't be afraid to ask again and if everything goes OK, PM me to let me know! (To do that just click on my username top left of this message. A small 'balloon' will appear with several options displayed in it. Just click on 'Private Message' and you're in business!)

Best wishes,

Mike.

Thanks Mike - Just to add that I've set Private Messages so that if you have new ones when you log on they will automatically pop-up on the screen saying something along the lines of: 'You have new messages, do you wish to view one of them...yes or no... on this screen or in a new window? ok...cancel'.

You can't miss when you have new messages when you log on, although it will only take you through to your most recent message...if you have more than one they'll be in your inbox as Mike describes. Just don't be worried you're missing anything...it will pop up if you have any.

Hope that reassures you, Vanessa!

Robyn

jen
6th June 2011, 18:24
when diagnosed in 2005 I thought about all the things I would never get to do with the kids. However over the past 5 years we have done lots including Disneyland, everything just needs a bit more planning. For every bad day there is at least one good day.

jadedjohn
7th June 2011, 09:34
Sarah, hi, I contacted my local ITV company recently, it was following an article on HTV West on dementia, I contacted the senior health correspondent via Facebook telling her my story, she responded and said would be happy to run a program on me and my journey with MND, in May the TV crew came to my house and filmed myself and my wife and my two children, and did a two-hour interview. This will be aired on HTV during MND awareness week. The people that don't live in the HTV area I will be recording the program and then post on this forum via utube. I reckon if people were proactive in contacting TV companies we could get somewhere, when I spoke with HTV they said the best programs always come from people directly i.e. the ones that the public request.

Kindest regards
John

MattJ
7th June 2011, 09:48
Hi John,

Thats brilliant! Can't wait to see the interview.

Z3 Driver
7th June 2011, 21:53
Nice one John, look forward to seeing this. Im involved in a piece for the MNDA magazine to be out later in the year.

As for Miche i think that if thats her wish then who are we to disagree. After all its her life. And she needed to do it whilst she still could herself.
Must have taken a lot of courage to do this and i dont see it as a get out.

We all have our own levels of tolerance and dignity.

Thanks to Chris for doing such a difficult interview and the MND exposure.

sarahezekiel
7th June 2011, 22:55
That's great news John, I really look forward to seeing it! I tried several times but no luck. Even got myself banned on TV ;)

MattJ
8th June 2011, 17:42
Hi all,

Another TV moment coming up talking about assisted death and MND. For some reason the media constantly seem to connect the two when dealing with this issue which really isn't helping the public perception of the disease. I am sure if you asked people in the street, what type of person they thought went to the clinic in Switzerland, a large number of people would say "people with MND". So frustrating!

http://www.dailymail.co.uk/news/article-2000007/He-drinks-liquid-falls-deep-sleep-dies--moment-man-commits-suicide-BBC-cameras.html?ITO=1490

I agree with Sarah that it's about time the media showed something positive regarding MND like with Patrick's portraits. Surely this is something the MNDA could / should pursue with their many contacts.

sarahezekiel
8th June 2011, 18:19
Hi Matt

That has made me so angry. Why is it always MND sufferers shown on TV at dignitas? Surely other people with other illnesses choose to kill themselves?

I've just heard that I'm going to be in the Sunday Observer magazine soon. I wrote the article and it shows that there is life after a diagnosis of MND.

Sarah

G60dubber
8th June 2011, 21:03
I agree that it is presenting a very narrow view of those who go down this route. It is such a shame that your article will not get the same level of coverage as a tv documentary and truly show through your experiences that life can go on even if it has to be adjusted to accomodate the changes.

Z3 Driver
8th June 2011, 23:30
i agree with the above comments but i also think that it makes people realise how MND affects people and that there is no cure and no way of recovery.
So many people i have told of my diagnosis have not realised the magnitude of what im actually saying to them .
So programs like this might help educate some out there that are oblivious to what MND really is.
I myself had very little idea !

chengliu
9th June 2011, 10:43
. I worry about newly diagnosed people seeing interviews like that and thinking that suicide is their only option.

sarahezekiel
17th June 2011, 17:56
I'm going to be in The Observer magazine this Sunday 19th June. It's an article about people with various terminal illnesses. I give an honest view of my experiences living with mnd. I hope it will help somehow.

Sarah

jadedjohn
17th June 2011, 18:21
im on TV on Tues - see below, for those people who are outside the HTV region, i will be posting the program via my jaded john website, under videos.
here in fact - http://www.jadedjohn-fights-mnd.com/videos.html
also the health correspondant for itv wales is interested in doing something similar - i have the contact details.
john

I would like to make you aware of some TV coverage connected to MND that will be broadcast on ITV West during MND Awareness Week. As a delegate at the Bristol Spring Conference you are aware that ITV West came to film at the event and indeed some of you were even interviewed. It was fortunate that the Bristol Spring Conference fell at just the right time to help co-ordinate the filming and I would like to thank you all for welcoming the ITV West camera crew so warmly. The fantastic support we received from everyone has meant that we have been able to provide ITV West with lots of information and interview opportunities which I am sure will lead to a powerful feature about MND.
At 6pm on Tuesday 21 June and Wednesday 22 June, a two-part series focusing on MND will be broadcast on HTV which covers ITV’s pan-regional section from Gloucestershire down to Cornwall. The programme is on air from 6pm for 30 minutes.
John Saunders, from Somerset, who is living with MND has acted as the catalyst for this feature as he contacted ITV West after watching a piece they produced on dementia and told them that they should focus on MND. This is a brilliant example of local activism! Thank you John!
Since John made this initial contact with ITV West we have worked very closely with the programme to provide a news-worthy angle and to provide statistics and information, spokespeople and other interviews with people living with MND.
The two-part feature
One part of the feature will focus on John's story and will be a very personal account of living with MND. The second part will focus on how spending cuts at a national and local level are impacting individuals and families affected by MND.
Working with the programme-makers we have made the point that the MND Association and our network of branches and groups are, wherever possible, plugging the gap in the provision of equipment and support which has been left as a consequence of public spending health and social care cuts. We have emphasised the point that the demand for Association funding/equipment/services has increased dramatically over the past two years and that ultimately it is only thanks to the public donating money to the Association that we are in a position to be able to do this. We also worked with ITV West so that they could release the two-part feature during MND Awareness Week.
Filming we arranged for ITV West
We are not able to view the two-part feature before it is broadcast but along with John's interview, the following pieces of filming/interviews were arranged by the Association to help highlight MND in the South West. Some or all of these pieces of filming may be used:
Interview with Bob Penman who has received funding support from the MND Association Financial Support Service. He has recently received funding from the Association for a specialist piece of equipment which will enable him to continue working.

MND Connect helpline