This Is MS Multiple Sclerosis Community: Knowledge & Support

Copied from http://www.cpn.help.org, where I posted it on Friday:

The 'cellist Jacqueline du Pré died in October 19th 1987. She was born in January 1945, so was only 42. I remember reading a biography maybe just three years before this, at about the same time as I first showed signs of having multiple sclerosisi myself, the disease which caused her premature death. She married Daniel Barenboim, the pianist and conductor in 1967, in Jerusalem, in the aftermath of the six days war, so not the best of times. She went on to make several recordings with the self-styled "Jewish Musical Mafia": Barenboim, Itzhak Perlman, Pinchas Zukerman and Zubin Mehta, but in 1973 she was diagnosed with multiple sclerosis and her playing very rapidly came to an end. Her first symptoms were just lack of sensitivity of the finger tips, but fourteen years later, she was dead. Elgar, to me, is not the most memorable of composers, except for one piece, the cello concerto, and Jacqueline's rendition of it has never been bettered. Even before her death it would bring tears to my eyes, now I just can't bear to listen to it. Perhaps one day I will be able to.

I have a 'cello myself, bought by David when we married because I don't like wearing rings. It is a beautiful old English 'cello which has been much repaired but has a rich, lustrous golden brown oil varnish. I was still only learning when my hand gave out. Now I can play for a little while, my arms are strong enough again for a while, but I can't quite hold the bow properly. Now, I guess if I was willing to practise for hours and hours I would eventually be able to, but I prefer to paint. I am never going to be a brilliant 'cellist but I'm not a bad artist, and am able to make money with it, so most of the time the 'cello sits in its case in a corner of my studio.

Yesterday as well as being the nineteenth anniversary of Jacqueline's death, we heard on the BBC evening news that a man had been given thankfully only a suspended sentence for assisting in the suicide of his dreadfully disabled wife who was 59, in a wheelchair and needed everything doing for her. She had previously tried to kill herself several times. She was suffering from multiple sclerosis. Whilst 42 is nothing like the normal age that most people with MSi are expected to live to, according to certain sites, neither is 59. Both women were extremely well looked after and cared for, they wanted for nothing except their health.

Sarah

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Sarah,

Thanks. I was only thinking about both of these sad stories yesterday. The case of the husband who assisted in his wife's suicide is very sad - knowing that it was done with love in mind - I can't think what he and his wife went through. Unfortunately, these cases are sometimes seen in the press and reflect a disease that can bring immense suffering and sorrow.

The media described MS as a 'terminal illness' - and the UK MS Trust wrote to the BBC and ITV:

"Dear Sirs

Multiple sclerosis (MS) lowers life expectancy by only 5-10 years on average. It is therefore not the 'terminal illness' you dub it in reporting on the sentencing of Mr David March (19 October 2006).

Premature death due to MS is almost invariably due either to a failure to manage symptoms which leads to secondary complications or in some cases to suicide. Properly implemented, the NICE clinical guidelines on MS should prevent many of these problems. Sadly they are not at present.

The lay media provide an important service in raising awareness, but they also bear great responsibility. The MS Trust sees first hand the distress inaccurate reporting can have on those with the condition. However we can only guess at the impact regular portrayals of MS as a 'death sentence' may have on the increased suicide rate in MS, particularly amongst young, non-disabled men with the condition.

I feel sure that you will work to eliminate future inaccuracies from what was otherwise a sensitive and informed piece of journalism.

Should you wish to discuss any aspect of MS further, please do not hesitate to contact me or one of my team.

Very best wishes

Chris Jones
Chief Executive
MS Trust"


I actually agree with the media that MS is a terminal illness - and the case of Jacqueline du Pré and this woman from the UK illustrates this. I think it quite cruel that the MS Trust thinks that MS 'only' shortens life by 5-10 years. And of course the real issue is quality. My MS nurse was telling me last week that she has a 45 year old woman patient in a distressing state -only function left is her sight / some speech. They asked her if she would want to be resuscitated if she stopped breathing etc. She said yes - as she could still see her daughters.

This all sounds pretty morbid, but the coverage of the assisted suicide, du Pre story and my (sometimes insensitive) MS nurse have highlighted what a cruel disease this can be. I recently visited the Australian MS Society website and the first story is of a 46 years old woman who is a quadraplegic.

Jacqueline du Pré died 19 years ago, and you have to ask what progress has been made since then. The TV coverage of poor Richard Pryor is another haunting image.

Not a good week MS wise - too many reminders of Governments (US / UK)prepared to spend $x billion bombing the hell out of one country or another yet cutting back on research funds, MS nurses, mobility aids etc. I read today that the UK NHS spent £300 million removing tatoos last year - sort of somes up what a mad society we live in.



Ian

Ian,

For once I have to agree with you completely. Of course MS is a ternminal disease, not for everyone, but for many. They are the ones who don't post here, because they can't. They have fallen off the radar and have been forgotten about. This was an aditional post I made at CPn Help:




Then today, in reply to someone else, I wrote this:





Additionally, I would say that David, during his hospital duties, had to see a lady earlier last week who the registrar described as having "end stage" MS. She had aquired a septicaemia due to a UTI caused by permanent cathterisation. She was younger than me. She survived this time, but can do nothing for herself.

Sarah

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.