I was ;ostening to the radio yesterday and there was a story about a lady who had terminal MS, could not do anything for herself, needed 24/7 care and was in constant pain. She was apparently appealing to a judge to allow a family member to help her kill herself
I didn’t think any type of MS was terminal,am I wrong and there actually is a type which is in fact terminal?
I understand that the rare Marburgs is terminal, but dying of associated causes is also possible and amounts to the same thing.
Life is terminal, so wouldn’t waste any time worrying about it.
MS isn’t terminal,but complications from other ailments are.If MS was terminal there would have been huge amounts of money sunk into research.It isn’t so there hasn’t.
Wb
Like any illness there will always be a minority who get very ill and don’t have a good outcome. The majority of people with ms have a normal lifespan like the rest of the population. Please dont worry about it as nobody knows what the future will bring. Just try to enjoy your life as best you can.
Mary
Everybody dies of something in the end, but most of us won’t die of MS. It is sad that this lady is so desperately ill, but her story is not typical. As others have said, try not to let this prey on your mind.
Alison
x
When I was diagnosed in 2006 I was given loads of leaflets by the hospital. One of them was about life expectancy with MS. The general view in the book was that MS’ers tend to die 8 to 10 years earlier than the average death age. People are always scared to talk about death. Even from a young age it has never bothered me about dying. It is only like going to sleep. And what better feeling is there than going to bed.
I like to think I believe in something after death. I hope it is re-incarnation. When I used to go to college on day release the class had a really interesting lecturer. He was from the Czech Republic and a Buddhist. I used to regularly try to get him to speak to the class about his beliefs, far more interesting than accountancy, and one day he did. His, or the Buddhist theory was reincarnation, but you go up a level each time you die, till you hopefully reach the ultimate level, where you become a ‘master’. When you reach that level you stay in the Buddhist heaven… called Nirvanah. This was back in 1989 so my memory has obviously faded slightly. But that was basically it. I remember, being a smart alec, I said so therefore if everyone comes back better, the world must be getting better. He said yes that is true, the world is getting better. I thought about this later and realised he was correct. Although it may not seem like it, the world is better now than it has ever been. We can cure many diseases which only 100 years ago people died of. We do not hang people for trivial offences. We have the NHS and a reasonable welfare system to look after the likes of ourselves.
As a class we never saw the lecturer again after that chat. I sometimes think back to those times and wish he would have spent half the term telling us more about his beliefs. That was the only time class was interesting.
Whammel is right, there is a very rare form of aggresive MS called Marburg’s variant http://www.mssociety.org.uk/ms-support/people-severely-affected-by-ms/about-severe-ms
I believe there used to be a slight discrepancy between the life expectancy for people with MS and the general population, I had heard 6 years. However with advances in the treatment of MS and its complications, I am sure this is narrowing all the time.
I agree with the others, we all die in the end and in fact the only day we can live for is today! Try not to worry, none of us MS or not know what tomorrow may bring. Each day is precious.
love and sunshine
Tx
Apologies if anyone finds the following offensive, but tough t*tty.
People here certainly seem to shy away from expressing their thoughts on this subject. Or maybe it is not good etiquette to speak up on it. Or perhaps the vast majority really do find it the most noble thing to pursue survival to the nth degree.
Personally I find the ‘chin up / mustn’t grumble / could be worse’ standard line to be a mixture of demeaning, patronising, unimaginative and depressing.
I know of a few MS sufferers who have put ‘non-resuscitation’ wording into living wills; they have decided not to continue, if the opportunity arises. It must surely be on the minds of some folk here as to when their own line is crossed between acceptable and unacceptable quality of life, and what to do about that. So let’s have that discussion.
For me, loss of independence is the key marker. If I cannot, on a whim, get up and out and go do what I want to do, I don’t think I really want to be around any more.
That’s easy to say now of course, but the idea is taking a more concrete dimension with each passing day. The kids have a roof over their heads, they are financed and have maternal care. The world will not stop turning if I ain’t in it. It is a very personal choice, and certainly all our mileages will vary, but now thoughts turn to how to bow out gracefully (or in style!) when and if the time comes.
Dignitas is way too clinical. I don’t fancy the various high-impact solutions that immediately spring to mind, carrying as they do the possibility of survival with monstrous injury. A friend who had breast cancer looked into this quite deeply a year or so back. There was talk of some herbal remedies that cure you of the critical illness called ‘life’.
Not imminent for me, yet the adage ‘hope for the best but prepare for the worst’ is highly resonant, and anyone with the low-down for a suitable departure plan, feel free to pm me!
Hi, I think the majority of the general population do think MS is terminal. We know different, but yeh, if others complications set in, an MS body may be too weak to fight.
luv Pollx
MS is not classed as a terminal illness,but there are certein types of ms,like marburgs,that is very aggressive from the onset,and leads to death in a few years,but its quite rare,and if you have this you have it from the start,you dont go on to develop it,
also ms sometimes progresses more rapidly,mine was quite mild for many years and hardly affected me, and i stupidly thought that it would never get bad,but it has,and i am finding it hard to accept just now,but while it was mild i told myself i would just get on with my life and deal with the bad, if and when it happened,i never spent too much time worrying about it and i am pleased i didnt,but i also knew that it could be bad,as i knew quite a few that had died,same time i was diagnosed,i think its impoartant not to be scared,but also be aware too, i also agree with skels answer to your post,too much is ignored about the more severe type of ms,because its not a majority.
So hypothetically an obese smoker with MS could be reducing their life span by 24 years!*
*10 for the MS, 7 for the smoking (casual), 7 for the obesity (moderate) All average figures taken from the internet
Or I could leave work and get run over by a bus or in a car crash, etc.
Believe in Mindfulness, live your life, do what you are able to do on the path you have been given (just altering the route to include short cuts or scenic diversions!)
We all deal with things in our own way.
True, a few people die from MS and some die of complications resulting from it. I know two people in the latter category.
I may or may not die from MS related issues, I will die of something.
In the meantime I prefer to get on with my life and not dwell on what may or may not happen.
You may find this demeaning, patronising, unimaginative and depressing, that is your issue not mine.
There is a viewpoint that if the general public think that MS is terminal they might have more consideration towards us.
And for a couple of thoughts on average statistics:
The average life of a coronary bypass operation is around 7 years.
Mine was 12 years ago.
So MS knocks 6-8-10 years off your life.
Who cares what the figure is - I am already more that 10 years past the average life expectancy according to the ONS.
Averages, without (at least) the Standard Deviation statistic that should go with them are not a lot of use except for impressing the tabloid press or MPs.
I’m with skel on this one. ‘hope for the best but prepare for the worst’ Went out looking at stairlifts yesterday. Young lady in the showroom said “We cannot fit one before Christmas”. And there I was thinking about February!
Geoff
It is not my ‘issue’, it is my point of view.
You may not agree with it, but you will not change it.
Must say, my better half is going one further and planning a move from a three floor house to a bungalow. (Am only RRMS and newly diagnosed, driving, running, gym sessions, etc. so planning well ahead. Unless it is without me?
Geoff, was going to include that statistic in as well but thought best to leave it out for those who fall into the category of all four! Proves that life is what you put into it!
I’m with Skel on this. It’s a very long time since I could go out on impulse as I can’t walk more than a few yards and am not allowed to drive. I pay an agency lady to take me out once a week, and have carers to help with bathing etc. and that’s about it. What’s the point? If I did plan to do away with myself, there would be no easy way, but with no dependants, I think it should be my choice. I’m 66 and have had MS for 50 years. I’m certainly not afraid of talking about death.
I don’t think any of you MSers should worry - only worry about what you can change is my motto!
But as for MS being terminal…my hubby is 43 and has been told he has a week or so left… my aunt died at 56 with pneumonia after a 22yr MS battle
On the other side one of my husband’s close friends was also diagnosed at the same time as him - and although he has some ON and needs a stick for walking, is doing OK. As is my husband’s best friend’s sister in law - diagnosed many years before my husband.
It’s true what they say about everyone’s progression being different…
Funny thing is that, it may be a heavy smoker or heavy drinker or over weight person asking “is MS going to end your life prematurely” …Hello???
Hello folks,
It is odd, but as well as having MS, my fiance had it too (we met via our mutual illnesses) but though he died of this some time ago, and we were all told that “it was the MS”, no one really knows what actually killed him. Was it his liver? His infections? Depression? I really don’t know what to think as it would only be an uninformed guess.
Moira