One of our readers wants to make everyone aware of ‘An Instinct for Kindness‘, which was broadcast on BBC Radio 4.
….. This is a heartbreaking, but essential radio drama, about the bravery of suffering from MS and the true story of a woman who makes the decision to go to Dignitas in Switzerland to end her life. It is a tough listen, but you’ll be grateful you heard it. It is essential to hear this story for both sufferers and physicians working in MS…..
Please, please would other readers share their upbeat, 'good news' stories to give some hope to readers of this post living with MS? We all know only too well what can happen with this ghastly disease but we must always hold onto hope and the love/support of others to help us through difficult days. Does anyone have any really positive experiences following treatment with any of the DMTs? Any uplifting and encouraging comments? Thankyou.
Yes, Lemtrada and HSCT seem to stop progression which is big news. Many remyelination/neuroprotection agents are been tested, some will work. Stem cells seem to work too (Tisch). Hopefully there wont be any such stories any more.
I agree with the comment about needing some sense of less negative news/posts – this is mortifyingly depressing for a newly diagnosed 23 year old like myself. We know MS sucks so bad but is that all there is to it? Aren't newer treatments making MS more manageable? Should I expect a bleak/miserable/not worth it future?
I am truly, profoundly and devastatingly destroyed by this radio play. It is so moving. The cruelty of MS has never been so absolutely captured.Prof G, what are your thoughts? Team G should all hear and discuss this play. I am shattered by it.
In defence of this post. This blog is also about telling stories and responding to the community. We received a request from a reader and commentator to make our readership aware of this BBC dramatisation. I agree it may be not be to everyone's taste. You do have the option of not listening to it. Unfortunately, I lost my rose-tinted glasses about a month ago an had to purchase new clear lens ones.
That's true, but less depressing stories do exist and hopefully there will be more and more(?) in the DMT era. I volunteer to buy you new rose-tinted glasses if it helps bringing some optimism. Unless you lost them on purpose.
Nice post
The post and radio dramatisation takes away some of the fear of the unknown (for me anyway). Thank you for posting it.
I have said this many times before; one of the MS Societies wanted to use and adapt my Tube Map analogy of the MS journey. They want to remove the terminal phase of MS as it discussed things like assisted suicide, advanced directives and respite care. I said no. Why? Because there is no hiding from the fact(s) that MS may be a cruel and awful disease. Unless you know about the extremes of this disease how can you expect people with the disease to make decisions about high risk therapies that just may prevent them getting to the terminal phase. Yes, we can be upbeat but we don't want to raise unrealistic expectations. This is why this blog is about good, bad and other MS-related news.
Well said Prof G.
I am in tears after hearing that BBC radio play. How dare Team G post it on this blog. How dare you, Prof G.MS is curable nowadays. You said it yourself. Please delete this post. Delete it this instant!
It is a harrowing radio play. So disturbing. I am numb after hearing it.Prof G ought to have issued a warning to us all about its sensitivity.
The patient made the decision to end her life. Although her MS had progressed the disease did not kill her. Her quality of life had deteriorated to a point where it was personally intolerable. Yes, it is a very sad story.
Re: Doesn't the adjective 'heartbreaking' tell you enough? The BBC blurb also warns you. If you don't want to hear about MS' darks side don't listen to this drama.
MS is not curable these days. Even with DMTs, many, many patients, including my young spouse, face the same reality as the star of this show.
Get real. MS is a bad disease. It ought not to be sugarcoated.Grow up, everyone.
Quite. Just because you don't like the thought that MS is quite bad for some of us, does NOT mean we should be sanitised out of the way.
Ditto – I don't want to pretend there aren't some living with the worst of this disease! Same with the contents of this Blog!I think that no other site is as invaluable to many of us as this one!Telling us how it is – good, bad and ugly means we are informed and we can make decisions and plans accordingly. Harrowing sometimes definitely, but more secure or not being taken on our blind-side. Thanks to the Blog there's a lot of us who are living better with MS and I for one am more organised for the future, if it is full on dark-side!
To quote the 'Mouse' this is clearly a marmite issue.
http://dwdnsw.org.au/sufferers-cry-i-am-so-sorry-i-have-had-to-end-my-life-this-way/
Does no one understand that each person has the RIGHT to determine the quality or lack thereof of their life? For many, hope is not an answer when their MS has continued to cause physical deterioration as well as social isolation. My son chose not to live as an MS victim. His PPMS was quick and devastating. I honor his right to live or die as he chose. He made the choice to die. He had the right.
Oh yes, we had this discussion recently:http://multiple-sclerosis-research.blogspot.com/2017/12/dying-on-your-terms-is-it-possible.html
I too felt really distressed after hearing this. As someone with SPMS, it really played on my mind. I'm progressing rapidly now to the extent that, although not bed bound (yet) so much of this rang true with me. I had cancer 3 1/2 years ago, which impacted on my MS in a big way. I too, feel very much alone with this disease. I no longer see an Neurologist, just an MS nurse about every 9 months at the moment, although I fear that is under threat. I also feel that it's becoming very much age & postcode related. I'm fortunate to have my husband, but still feel isolated.
I was devastated to read this. As someone with SPMS, currently battling to stay positive, I found that this had me so distraught, wondering about my own mortality. I had cancer too 3 1/2 years ago, which had a massive impact on my MS. I get told that the Neurologist can no longer routinely see me, they are far too busy. That added to the fact that our MS nurses are under increasing pressure. I'm meant to be seen every 6 months by an MS nurse, but we are fighting to keep one for my area. Without these nurses, more people with MS would be left alone & become depressed, by the lack of services available. I'm already aware that when you become over the age of 60 plus you don't feel included in many services for those with MS. Physio's are one example that seem to become unavailable to those that might benefit.
I was devastated to read this. As someone with SPMS, currently battling to stay positive, I found that this had me so distraught, wondering about my own mortality. I had cancer too 3 1/2 years ago, which had a massive impact on my MS. I get told that the Neurologist can no longer routinely see me, they are far too busy. That added to the fact that our MS nurses are under increasing pressure. I'm meant to be seen every 6 months by an MS nurse, but we are fighting to keep one for my area. Without these nurses, more people with MS would be left alone & become depressed, by the lack of services available. I'm already aware that when you become over the age of 60 plus you don't feel included in many services for those with MS. Physio's are one example that seem to become unavailable to those that might benefit.