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Trevorhb
11th March 2015, 20:56
Did you watch it? We found it very moving, but certainly worth watching.

caz
11th March 2015, 21:00
Yes I did and cried through most of it as it brought back so many sad memories.this should be shown to every dr s surgeries care agencies and hospitals.very very powerful,didn't pull any punches and very emotional.caroline xxx

Candle
11th March 2015, 21:02
Yes, certainly remembered some aspects vividly. A true reflection of the difficulties faced by the family too even though it must be so much worse for the sufferer. Mum elected not to have anything to prolong her life and we respected her decision but it was so hard to watch her fast progression. It was like dropping off a cliff and no sooner had we met one challenge we had another and another. Hope everyone watching is OK.

Trevorhb
11th March 2015, 21:06
What concerned us was the difference between them and us. Quite a large family, probably quite well off and here is us just Annette and me in a house with is not really suitable. I can now understand better why some people refuse treatment earlier, that is no way to live.

willsandco
11th March 2015, 21:14
It was very moving, very emotional, at times very harrowing. It sets you back on your toes, wondering how your own disease is going to pan out. But, hey, I wasn't prepared to think about that a year ago and for sure I ain't going to now. I am just dealing with each day as it comes, each symptom as it comes, each bit of deterioration as it comes and go out and cause as much mischief and mayhem as I can, while I can! But, thank you so much, the Isaac family, for having the courage and the honesty to deliver what was a first class insight into MND in the raw! Love to you all Joycie

pete
11th March 2015, 21:18
Yes I did and cried through most of it as it brought back so many sad memories.this should be shown to every dr s surgeries care agencies and hospitals.very very powerful,didn't pull any punches and very emotional.caroline xxx

Hi Caz,
Yes found it very honest and at last we have a real family going though the torment of having to deal with MND, as you already have, its good to know it was real life and not edited for TV viewers, for me Steve did what I could never do ,that was prolong his family's torment by going for the trach, as he was pretty much locked in ,I question is that a selfish act ? After the respiritry doctors remarks ,and what quality of life has he now. And is it fair on the family to expect them to do even more than anyone should be asked to do. It's a nightmare that no one should have to face in2015.

willsandco
11th March 2015, 21:22
It is a real life decision, isn't it? - not a play or a film It was heart wrenching to see that family's torment It was a complete nightmare, Pete, for them and for Steve. A real discussion piece Love Joycie xx

pete
11th March 2015, 21:30
It is a real life decision, isn't it? - not a play or a film It was heart wrenching to see that family's torment It was a complete nightmare, Pete, for them and for Steve. A real discussion piece Love Joycie xx

Hi Joycie ,
Just been trying to think of a situation that could be any worse, and I cannot !!.

XXX

willsandco
11th March 2015, 21:32
Me neither. x

Springtime
11th March 2015, 21:36
What an amazing family. I feel the programme got across problemsand heartache, on so many levels.
My husbands MND has no resemblance to the gentlemans experience, however I know from what I have heard from so many on here telling of their symtoms it is true a true reflection of what some experience.
It covered the emotional feelings of the wife and children so well. And quite understandably.
I was amazed at his desperation to cling to life for as long as possible his quality of life must be an acceptable level for him to want to enjoy more of life.
Finally it proves how very different we all think and feel. Is it a way for anybody to live.? I really can't answer that but he obviously thinks it is.
Springtime

Barry52
11th March 2015, 21:40
This was a well put together film but as Trevor points out they had a large family group to support him and also one of the best nurological clinics in the country. They failed to capture the political angle in support of assisted dying and I thought his tracheostomy decision was very selfish. Just my opinion and I respect those that would support it.

Pam S
11th March 2015, 22:03
What a brave man Steve Isaacs is I watched with my husband who is due to see the Neuro consultant tomorrow., He has been suffering symptons much the same as Steve and we are hoping the consultant will have some answers for us, My husband said if it is finally confirmed to be MND then he would not wish to be kept alive by artificial means but everyone has the right like Steve to decide when to let go, only he knows when the time is right. God bless him and his wonderful family.

Jobowray
11th March 2015, 22:42
A very sad programme and a very brave man to make that decision even though his family clearly didn't want him to.
My husband was diagnosed 3 years ago and we don't have any carers, we work everything out between us although this now becoming difficult as I still work 3 days. We could really do with 4 carers but I'm afraid in our world this won't happen. Just had an assesment for continuing health care but from what was said during the assesment he isn't poorly enough?? Can't walk, no use of arms or hands, swallow reflex going, breathing badly affected and so on and so on... Don't really know how poorly they expect him to be to qualify for this support.
Well we have come this far on our own and so we will continue.
I wasn't comfortable with part of the programme when the family were upset that he wanted to prolong HIS LIFE as long as he could.
I wouldn't want my husband to not have intervention because I was tired of caring for him. I know from own daily experiences how hard this journey is and we both know it will only get harder but my view is at least if my husband is still here in some format he gets to see his little girls grow. Everyone is different I know but that's how it made me feel.

pete
11th March 2015, 22:51
This was a well put together film but as Trevor points out they had a large family group to support him and also one of the best nurological clinics in the country. They failed to capture the political angle in support of assisted dying and I thought his tracheostomy decision was very selfish. Just my opinion and I respect those that would support it.

Evening Barry,
The mention of assisted dying would no doubt resulted in the film being cancelled by the pro life mob, it is still a hot potato subject,as for the trach request after what the respiritry guy said ,how did he get that done against the medical advice , I admit it was my first thought he was being selfish

Seriouslypinkchick
11th March 2015, 23:07
Hi all

I watched it and got upset just like I thought I would, this is so similar to how things are with dad using electric chair more and more and becoming less mobile and his care increasing all the time like some say get over one hurdle and then you come to another, I totally understand what stress and stain in it put on Steve's family as after so long it is very tiring and how your life just revolves around mnd and caring, I feel like this now and I am on my own with my dad as I am an only child and my mum split with my dad before I was born, I got rather upset as if my dad decides to do same what effect it will have on me, don't get me wrong I have a partner that does support me but he doesn't get involved in any of dad's care it's all me and dad making the decisions which I hate and most days I feel trapped numb and isolated, and I know that I am not alone as there are many people on this forum that feel the same, just heartbreaking knowing that this is how dad will end up and I just have to sit back and watch it as I have no control over anything just like my lovely dad hasn't either.

A moving programme that brings reality home how many more need to suffer before there is a cure and just like Steve's wife said I hate mnd it's so bloody cruel.

All my love to all on the forum Jennie x

mik
11th March 2015, 23:49
i am very upset by some of the comments tonight, i didnt realise how narrow minded some of you are. So a person who wants to prolong their life by having trache fitted is selfish, because wanting spend as much time as possible with your family is selfish. By the same reasoning everyone taking life prolong riluzole your all selfish. If after diagnosis you dont find the nearest tree and string yourself up from it your being selfish, because you know whats coming. Just because the glove dosent fit you dosent mean its wrong!
mik

willsandco
12th March 2015, 00:13
I wondered what your take was on this, mik,when I watched it because I knew you had a tracheotomy. I just felt, as a family, they were very honest in sharing their feelings. I suppose no one knows how they would feel until you had walked a fortnight in their moccasins. Mnd is a tough call for everyone involved, that is for sure! Joycie x

Seriouslypinkchick
12th March 2015, 00:14
Hi mik

Everyone has a different view and mnd effects people differently, but when Steve got to that point where he wanted to have the trach his family had gone through so much already and felt that he had suffered enough and so had they like they said all there lives had been effected and it just revolved around mnd and it just takes over your life not just the person that has it the family to, I can understand your view but we are all very different and all have different opinions, I do feel like him having the trach fitted was a little selfish as he and his family had gone through so much and his quality of life was no better, so I understand why his family was against it. I don't think by taking riluzole is selfish depending at what point you start to take it meaning if you take it early on when you haven't got many symptoms and you have a good quality of life them yes I think taking it is a good thing as it's proven to slow mnd down but taking it when the disease is so far advanced I don't see the point in suffering any longer and I hate seeing my dad suffer daily not able to eat not able to wash or dress or brush his own teeth struggles to pull his trousers up after going toilet it's never ending and it's not the life I would like to lead but then I am only voicing my opinion, I honestly don't mean to offend by anything I have said but this disease has stripped everything away from my dad but I have said to him whatever he decides I stand by and support him, I will never tell him how I feel and influence his decision only he knows what is right for him

Xxx Jennie xxX

Jobowray
12th March 2015, 00:29
I think describing the people who have commented as narrow minded is harsh. We as human beings all manage and cope with life differently. unfortunately we are all unlucky enough to be effected by mnd and all our experiences are different and as these are what we base our views and opinions on then obviously they are going to be different. You can only ever do and say what you think is right .
I didn't like what I saw on the programme it made me feel very uncomfortable that the family were so open about being ready for him to die and my husband was openly upset by it. I was glad that he went against everyone's wishes and did what he thought was the right thing.

Jo

mik
12th March 2015, 01:34
I am 6 years in with MND thats 6 not 4, the only movement i have left is in my big toe, i have everything done for me by carers and my wife. You think MND is generally hard, my daughter was 2 and my son was 6 months when i was diagnosed and my wife has still found time to organise fundraisers, look after me and raise our kids. My wife has never considered me a burden and she actively encouraged me to have my tracheostomy. She has never complained and this is from a women who was just 22 when i was diagnosed. We are still a very happy family 6 years in, not one person here thinks i'm selfish for prolonging my life!
With regards to riluzole you take it to extend your life even though you know what is eventually going to happen and its harsh but those extended weeks or months are going to be in the really really crap days of MND but thats not selfish?
mik

john
12th March 2015, 07:46
Mik,
I am with you all the way. My wife died 3years ago and at the time she was totally reliant on others for everything but if I could have her back with me on a trach then I would in a heartbeat.
I feel she had a quality of life in the sharing that she could do. Friends and family were always in the place and there was always laughter. That is all gone and although I am now free to get on with my life it is not a life I would have wanted. Irene never wanted to be a spectator but she was willing to be and got pleasure from it. I am not sure how nothing is an improvement for her.
Were she alive then there was always the hope that the cure, when it comes would make her whole again. With a pile of her ashes that can never happen.
Me being selfish I suppose but that is human nature. In most things in life we consider ourselves first and that is what Steve's family were doing in wishing him dead so they would be relieved of the burden of him. How is that selfishness understandable and his selfishness not?
Best wishes to you and your family in your chosen course and shame on those on here who join with his family in wishing him dead.

John

Night walker
12th March 2015, 07:50
I have only just managed to watch this on catchup. Hubby would not watch it. If I was not terrified enough before i am now. All that equipment, and hoists into the ceiling, full time carers. It was nearly real.
am glad everyone is different and that there are different choices. That said I could not say no if my hubby wanted a trach, I would support him in whatever he wants. I did feel for his family on that but they shrugged off their differences and got on with it. His wife and kids looked exhausted. Got all that to come.

I am sad this was tucked away on channel 5 with not much advertising, I would make the entire medical profession watch this. The consultant was very involved. I wish I could afford a purpose built room and full time live in carers. It would make things less terrifying. I know I am in my own with the role of caring, people say let me know if there is anything to do but I feel they are just words as they would be as mortified as I am with some of the things I am having to do for my hubby more and more.
We need more of this and I would love to see some of the threads on here published in their full glory so people can see the daily struggles of sufferers and carers alike.
I hate this disease I wish I could end the suffering but I have no choice like the rest in here. I am glad we have each other on here.
Sylv x

Jock
12th March 2015, 08:07
A good experience for me as it's the first time I've been able to watch such a video/programme - six months ago possibly not. Four family members and four Carers covering 24/7 that's plenty more than I'd ever get. :) I'm going to stick to habit of a lifetime and try and not judge people. If someone wants a trache fitted then that's up to them, but it's not for me personally. The programme encourages me to enjoy what I can still do and then die as swiftly as I can when the dice no longer tumble.

Jan
12th March 2015, 09:13
i am very upset by some of the comments tonight, i didnt realise how narrow minded some of you are. So a person who wants to prolong their life by having trache fitted is selfish, because wanting spend as much time as possible with your family is selfish. By the same reasoning everyone taking life prolong riluzole your all selfish. If after diagnosis you dont find the nearest tree and string yourself up from it your being selfish, because you know whats coming. Just because the glove dosent fit you dosent mean its wrong!
mik


You were the first person I thought of last night, I haven't watched it yet but read the comments and Facebook, you have such a beautiful family and are so young, you and they deserve to have you around a whole lot longer, your not selfish, you are fighting for your family and for that I truly admire you, I wish I had just an ounce of your strength and courage

Phil
12th March 2015, 09:31
So moving and frightening. My mum is at the start of this journey having just been diagnosed. Not sure how we'll cope but just know we must.

Springtime
12th March 2015, 10:07
Mik, I have sent you a message of support. You have done the right thing for you. springtime x

Barry52
12th March 2015, 10:07
I knew my post could offend some and divide us on our views but this film was meant to show how MND affects the patient and families therefore it was bound to spark debate. I did clearly state it was my opinion that this was a selfish act and I support those who choose otherwise. At 62 I have had a good life and I had hoped for another 20 years or so but I fully understand someone in their 30's with a young family wanting to prolong life. MND not only manifests itself in different ways physically but also emotionally and this forum is our means of sharing.

pete
12th March 2015, 10:10
Morning all,

I was expecting better from you Mik, as we are all in the same hopeless situation ,I had hoped you read all the posts and not been so quick to condem me and others for our own views ,firstly the comments were made about a family being torn to bits by this disease ,NOT yOU, and it was our own response to how we feel, And I commented that having a trach at 55 and over along with the respiritry consultants view that in STEVES case it would not be recommended as his condition and quality of life was only going to get worse he said it would be feeding a skeleton, with no viable chance of improving STEVES quality of life.
I Never said nor did any other member that it was wrong for everyone ,as in your case being so much younger with a young family and wife ,who can care for you ,NOT everyone can !! ,it takes a very special type of person to devote their life to looking after a partner who is totally dependant on them, THINK YOUSELF lucky you have that special person, many do not, and I don't judge folk who cannot, not everyone can watch the Decline in a loved one ,I have watched six members of my family die in the last twelve months from various diseases ,Cancer ,dimensia, and could do nothing to help them . So It made me so bloody angry reading your condemnation of others who shared their own views about what was viewed, It was never about you, but you came back with your own experiences ,I won't be apologising to you ,for my views , as they were made from my personal feelings about MY family and what I never want to put them through, EACH one of us have the right to decide our own futures, and EVERYONE has a right to express their own wishes as to what they choose to endure and inflict on their family's .
This forum is no longer a place where folk can share honest exchanges without being condemned for their own views ,for fear of someone taking offence because it varies from their own view of their situation . It's a sad day when when you cannot share your own feelings about this disease without being derided by those who should know better than to think we could be so vindictive to them.

Jan
12th March 2015, 10:33
Harsh Pete, very harsh

Trevorhb
12th March 2015, 10:43
The decision to have a peg was not covered although it must have been discussed. All in all a good programme but the family did not represent the situation which most of us find ourselves.

Trevorhb
12th March 2015, 10:52
Having read the comments fro Mik and the reply from Pete, I can fully understand why Mik got upset, but at the same time agree with Pete that he overreacted and should have realised comments were not about him. On a open forum with so many members we are not always going to agree and should not get too upset if someone seems to disagree with us.

pete
12th March 2015, 11:06
Harsh Pete, very harsh

Jan,

I never post anything that is intended to hurt folks feelings they are my own views as every other member ,should be taken in context and not made into a personal attack on others because they don't agree with a point of view.

The film on ch5 was the first I have seen that openly took the views of the sufferer and the family's own view ,MND affects many and not just the person who has it,and I think it's only fair that the relatives and indeed the partners view is listened to without condemning them for being less than expected of them ,sadly we are not perfect ,only human all very unique .

Sorry if my rant upset you but reading the posts just made me boil this morning .narrow minded I aint, just trying to make the best of each day,hope you have a good one.

Seriouslypinkchick
12th March 2015, 11:18
Hi all

Just wanted to say that what I have said in previous comments that I stand by 100% because that's my opinion as for Mik I honestly do not know if it was me and I had mnd as I to have a young family, my opinion as towards my dad is that I hate seeing dad suffer daily and deteriorate all the time is awful I am an only child and I am 34 so grown up with my own family and never before dad was diagnosed with mnd did I ever question what would I do regarding death, but when you are in this position it makes you think "what would I do" so if I had a grown family and they all had there own families and lives I would like to live as long as I could longs I had a good quality of life and didn't become to much of a burden on them so I would not prolong anything, but if it was me now at age 34 with young children I honestly think I would want to stay around as long as I could so I totally understand why Mik feels as he does as his family is so so young and so is he.

This disease is so bloody cruel and I hate it :(

Love Jennie x

Steve
12th March 2015, 12:21
This just shows how difficult these decisions must be. We all have to make decisions based on our individual circumstances at the time. What is right for one person will not be right for another.

This forum has taken a turn this last week. For some reason the atmosphere has changed.

mik
12th March 2015, 12:50
hi,
i never asked for an apology and never expected nor wanted one. I just cant believe that because someone wants to live longer regardless of condition you call that selfish. Imagine next month GM6 gets approval does he not deserve a chance that the drug could help. In my opinion the family are selfish they want their husband/father to die so they can have a easier life without him, i wonder what peoples reactions would be if your loved ones told you that. maybe i did overreact a little and narrow minded was to strong but his and my life are almost identical and saying he's selfish makes me bloody angry, but wanting to live is not a selfish act regardless of age. There was never a personal attack on anyone or their family, but its ok for some to have honest opinions but not me?
mik

Seriouslypinkchick
12th March 2015, 13:16
Mik

Of course you are entitled to have your own opinion, and I respect you for having your opinion I think you and your lovely wife are very brave and obviously very strong people to go through what you have over 6 years and you are still fighting which is brilliant, but everyone is different the hardest part for me is seeing dad suffer plus he still in denial and when I hear "why me" it upsets me as I have no answers all I can do is be there for dad as much as I can as a daughter and carer but this also puts a lot of pressure on my family life to as I have young children that need there mum to be a mum not just someone that looks after grandad, every single case of mnd is different and effect every mnd sufferer different and the family to.

I still get angry at why people have to suffer in such a cruel way before they reach peace, what a roller coaster mnd really is :(

Dave please comment as you wish as your experience and your feelings x

Love to all on forum x Jennie

Davec
12th March 2015, 13:17
Took my post down! Xx

Springtime
12th March 2015, 13:18
Mik, I think you have "hit the nail on the head there" his life is almost identical to yours! So understandably you will feel very strongly about opinions not just on here but when they debate about this programme on the television. You are young and have much to live for. I have not walked in your shoes so I cannot say what I would do, but at your age with a young family probably the same as you have, and no you are not selfish.
springtime

Ellie
12th March 2015, 13:35
Hiya Mik,
You are so lucky to have Jodie who supports you 100%. I fully agree with your decision to have a trache and quality of life is such a subjective issue. Like many people, I feel I have so much to live for.
If, like Steve’s family, Jodie didn’t want you to have a trache, do you think you’d have made a different decision?
TBH, watching the documentary made me feel like I was such a burden, even before the question of tracheostomy came up!
Love Ellie.

mik
12th March 2015, 14:00
hi ellie,
i am going to be 100% honest, if jodie didnt want me to have it then yes i still would of. i dont know how we'd have played out, but i want to to see my kids grow up. i'm quite happy with my life, obviously i hate having MND but i am ok. my kids are happy, jodies happy and i'm happy.
mik

dave please post.

Jan
12th March 2015, 14:13
He maybe a little while Mik, just read that sadly he has lost his Sharyn

petal
12th March 2015, 15:04
I also watched the channel 5 programme and like Caz found it very moving,I lost my husband to mnd two years ago,friends told me I was mad watching it as I had lived through it ,my replie was very simple it is all about awareness as I remember when hubby was diagnosed they all told me they had to google it as they knew nothing about it ,and most of them could not bring themselves to watch it ,but to all off us who. have been there and those of you still living with mnd we are all an amazing family of people taking and making the most if everyday x

Chrissy
12th March 2015, 18:10
I only managed to watch half of the programme, it was just like watching Bob, couldn't believe how similar symptoms could be. As for the trache debate, Bob would not even have a peg because of the rapid decline. HE decided that when he could no longer eat or drink, he would have nothing more to live for, he had the idea that the reason Stephen Hawking was still alive is because of his tranche,, didn't matter that we might have wanted longer with him, his personal choice was that he no longer wanted to live locked in. Seriously it had to be his choice

Love always
Chrissy

mik
12th March 2015, 23:27
after all the debating today, i decided to watch the program again to see if any of my opinions would change. they didnt change for the better, what i didnt see was the family helping with any of his care bar his son feeding him once. i found his wife horribley selfish in some of her comments, whats happened to in sickness and health? i also got the impression had the boot been on the other foot he would never had left her side. i wont watch it again, twice is enough.
mik

Trevorhb
13th March 2015, 10:52
As I said before Mik, the family were not representative of most of us. Not many people can afford to build on a new extension and pay for a full time live in carer which as you noticed was doing most of the work. Having said that the programme did help raise awareness about MND.

crackers
13th March 2015, 11:21
Hi all

I've waited sometime before joining the threads on this one and I think there is one very important issue here and it is age. When I was diagnosed I reflected on 'What may have been' and came to the conclusion had my children been younger and not adults I would have moved heaven and earth to be kept alive. As my children are in their late twenties I discussed my thoughts with my wife. She accepted my wish that I will not have any medical interventions at all but our children must be involved with the decision . I asked my children to look at some honest and informative links for late stage MND and we then had a family conversation. Interestingly, before we got together, my 28 year old son said I will never cry tears for this B' disease but I will be with you and support you without fail.
Anyway when my Wife,Daughter and Son had the chat we sat discussing the issues of MND and how it would effect our family and to my suprise they made things very easy by saying whatever you now choose dad in your preferences we support you. I new they were all feeling deeply and I went on to say that had they been younger ie in their teens I would have prolonged my life unreservedly, despite facing great adversity. As I feel I have the privilege of being able to choose options I did not wish to prolong my life and am now in a position to accept my death.
I really understand your position Mick and we all appreciate how brave sufferers can be when fighting this Bloody disease given their only movement is, 'Just their big toe' . For me I find it difficult to accept Steve Isaacs decision but respect his right, without question, too have made it.
There is no right or wrong in this case but just personal choice.
As for the programme whatever brings about a greater awareness of MND is very very worthwhile.
The actual filming began with the sons videos but was taken over by TV production, which is inevitable.
The care was top end and in privileged circumstances. I wonder how it would have been if it had been filmed in a situation of a single carer coping with an environment where there is ' no room to swing a proverbial cat' and struggling with state funding?.
Anyway there have been many very good comments already but the importance is awareness and long may it continue.

Take care

Kelvin

Springtime
13th March 2015, 11:24
The positives of the filming was to prove to everyone that MND mostly can move very quickly. It is a relentless, cruel illness. It makes it quite clear how most retain their intelligence and personality. That life is so so precious even to somebody who is so profoundly affected physically.
Let's not forget the family filmed this over 4 years and they had to pack that into 1 hour.
So really we have no idea how much or little the family participated.
We don't know where the money for the extension came from, possibly family, friends fund raising who knows.
As for his wife and children no they weren't selfish, they were hurt, desperate, tired and yearning for the man that they could see in front of them but that they had lost. I so so understand that feeling.
The guy himself loved life, and so he wants to live, I can also understand that to.
We are all entitled to debate it's good for us. But be wary that we don't become judgemental when really we know only a fraction of the story.
None of us, not one has walked in their shoes only some have had similar journeys.
Springtime

Ellie
13th March 2015, 18:03
Thanks for your reply, Mik.
The reason I asked is that my husband is against me having a trache and, given that he’s involved in my care, that doesn’t leave me much choice!
I’m not in need of intervention at the moment, so no crisis.

I’m sure your kitchen smells lovely with all the baking for tomorrow – teasing you with cakes :D

Love Ellie.

ccinjersey
13th March 2015, 20:02
I don’t think we had access here to view this documentary, if we did I saw no promotion for it. What a shame, when more awareness is needed.

Tracheotomy is fairly common here, and used as a viable option without much controversy. I find the word ‘selfish’ and interesting choice to use when someone is choosing life above all. I had always thought Mik’s choice was very courageous and bold, and one I admired. He brought up a good point, where there is life there is hope. Maybe GM6 will be that hope in the very near future that can provide successful results. Allowing those suffering to have more time with loved ones and have the ability to watch their children grow up. Stephen Hawking has a trach I wonder if they played a part to his longevity ?

CCxox

john
14th March 2015, 13:22
CC,
See if you can find Demand 5 on the Internet. This is a catch up service for channel 5 of UK TV. Most UK TV is not available to UK people abroad. It may be accessible if you have an overseas url.

John

ccinjersey
14th March 2015, 13:33
I will look for it John.

Thx.
CC xox

Springtime
14th March 2015, 13:47
Hi Cc, Yes I have noted that in the states the tracheotomy seems to be the way forward for most patients with MND. Don't quite understand why it is not given as a choice the same here in Uk. Probably down to cost, isn't everthing !!!

springtime xxx

Melanie_MND
16th March 2015, 13:29
Here is the link to watch the documentary online:

http://www.channel5.com/shows/filming-my-father-in-life-death/episodes/filming-my-father-in-life-death

Sadly I don't believe this will be accessible outside of the UK.

Best wishes

Melanie

ccinjersey
16th March 2015, 13:53
Thanks Melanie.

Your correct, unable to view in US.

xox

Ellie
16th March 2015, 16:10
CC, this is a brief video showing Steve with the trache in place.

https://www.youtube.com/watch?v=4sWoU91a9us

Ellie

ccinjersey
16th March 2015, 16:49
Thank you Ellie.

Dad has a sparkle in his eyes, and seems like a lot to live for, I totally get why he is choosing life above all.

xoxo

Jan
16th March 2015, 17:22
I have watched the first 30 minutes, up to the point of the hoist being used nod him losing his voice, not sure I can watch any more, it's broke my heart knowing that this is what my family are going to witness happening to me, I would rather it just end now :(

paul.williams
16th March 2015, 17:57
I had similar feelings. I watched the whole thing alone and I found it very upsetting. I know that it is a degenerative condition but to see it so graphically did shock me. I am now really mixed up and need to get my head back together!

Jan
16th March 2015, 18:44
That's how I feel Paul, I watched alone too and have asked my husband to now watch it so I can discuss with him

Lycanthrope
16th March 2015, 22:17
I didn't watch it either, as I know I would find it too upsetting. I think it's a very brave decision to have a trach and I agree with the others - where there's life there's hope. Let's hope we don't have to wait too much longer for some good news. Becky x

Jock
17th March 2015, 08:27
I found past 'You Tube' videos hard to watch, but having since moved closer to lock in I didn't find this so hard. I could relate to it all much better. I'm not thrilled to have MND, but nor am I going to moan my remaining time away. I'm going look for every silver lining that is available to me now and then hope the flu or pneumonia bring a merciful end to it all. When I see the pain of others in my hospice I realise there are more dreadful ways to die.

Phil
20th March 2015, 21:35
Brought the reality home to me of what my mum will face. She doesn't want to know what will happen so doesn't ask and most certainly would never watch this. Makes me feel as if I need to know as much as possible so will know how to help her as much as possible. Watching this however makes me think I'll never cope and don't have the finances or support that family has. All I hope is that I will be a support for mum and will make her life as comfortable as possible whatever choices SHE makes!

diane.p
25th March 2015, 14:39
i watched the program very sad as have this in front of me with my partnerwho had always been very active as a roofer up until last year was still working on roof then got news m.n,d at xmas, life changing. only prob i had with the tv program was these people had money and all the aids needed we are not in that position so where does that leave us, im sure its not helping my partner worring about the financial side of things, as his weight dropping fast , try to keep saying well what we never had we wont miss but when something like this happens not so easy to say as want him to have all thats possible, rant over god bless you all ,

willsandco
25th March 2015, 15:46
Diane. Get a really good OT behind you and get things set up before you need them, like wetroom, stair lift if necessary. This mnd can just turn aggressive on a sixpence or it can lapse into some sort of regression for a while. No one can anticipate it. Whatever, it is out of our hands Just start thinking about what adaptations you may need in the future. Love. Joycie

diane.p
25th March 2015, 16:09
thank you joycie, we have one comming to see us on 1 april so hope that goes well and can get few things in order as from what i gather these things take lot of time before get done ,and would like it done sooner rather than later,

willsandco
25th March 2015, 16:14
Just for information, Our OT has helped us with wetroom, bio bidet, 4 wheeled rollator, wheelchair, riser recliner chair, bed level, swivel car seat cover and has advised on pickerer uppers and motorised scooter. The first three she applied for funding from MNDA and she has applied for the chair on loan from MNDA. Her input has been invaluable. Hope you get on ok with yours. Much love. Joycie

Jock
26th March 2015, 08:13
I see above a couple of references to financial concerns. I recall the great leap from working to benefits last Autumn so I'm well aware how these concerns can impact negatively. Don't forget we have a 'Finances' section to this Forum and a number of wise souls ready to offer their advice.

miranda
26th March 2015, 14:42
A good OT will advise on what is needed before you know it's going to be needed. Initially ours arranged for grab rails to be fitted, then provided a raised loo seat and a frame to go round the loo (all this free of charge) and more recently we have received much the same items as Joycie mentioned. People raise a lot of money for MND and it does not all go on research. What is not provided via the NHS is often available through the MND Association.

harold
8th May 2016, 23:57
Is this programme still available?.

My interest is that my wife has now had a trache and so I want to know as much as possible about it

Candle
9th May 2016, 18:34
The programme was called Filming my father in life and death. You will be able to find articles about the programme although whether or not it's still available to watch is another matter.

Terry
9th May 2016, 22:21
Hi Harold:

If you put " Filming my father in life and death " in on youtube you will find a few clips.

Love Terry

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