Last reply 3 years ago
Debbie Purdy

Anybody watch BBC2 last night about the programe of her from 2008 – 2014? Thoughts please. Mine keeps changing, and after watching this it has changed again.

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stumbler
3 years ago

@billpat1 , I didn’t see the programme, but I have conflicting views on this sad tale.

Yes, the law should be updated to allow us to die with dignity, if this would avoid further torment and pain.

However, whilst I feel sorry for Debbie, I feel that she has done a disservice to anyone who has MS and, specifically, those recently diagnosed.

This is not how it needs to be and I worry that it will cause undue, and unneccessary stress for MS sufferers.

it’s just a sad tale………. 😥


dannyb
3 years ago

I totally agree with you @stumbler . I said so on an article published in the Daily Mail and I really did stir a hornets nest with my comments….


stumbler
3 years ago

@dannyb , there are issues here that only MSers will get, or understand.


Anonymous
3 years ago

I haven’t watched the program but am aware of Debbie’s struggle. Too many people are naive to what MS can do. The charities spin a somewhat rose tinted view and the “lets wait and see, many people go on to live a normal life” brigade do MSers a disservice in my opinion although others may well disagree.

Debbie’s story hits home loud and clear the devastation MS can and does cause. Barts Blog evidences this time and time again every single day. Message being, take control of your health right now and get informed, denial only goes so far.

In respect of the decision she made I strongly feel her body, her life, her choice, her right.


Anonymous
3 years ago

I totally agree with Sandwich’s description of the charities’ naive rose colored portrayal of what MS is. I will go further and say that their representations of MS as a disease that can be beat by simply sporting the right attitude (i.e. “I have MS. MS doesn’t have me”) and using celebrities with mild cases as the face of the disease, does a disservice to the majority of the patients that suffer much of their adult lives with a very difficult and for more than 50% of patients, seriously painful disease. I did not know how erratic and severe MS could progress until my own MS “train ran off the tracks”. I hoped for the best when dx’d as my neurologist acted unconcerned. I, unfortunately have suffered relentlessly, and if you have seen my previous posts, know how strongly I feel about alerting other patients to the possible painful progression of MS if unchecked. After years of trying the most potent DMDs that “slow the progression” of MS, I have become a strong advocate for Lemtrada after researching and hearing firsthand testimonials of the only proven treatment to stop and possibly reverse MS. Lemtrada was recently approved by the FDA and I start it this month. I wish that it had been available when I was dx’d and someone had alerted me to the potential severity of MS and that it was not good enough to merely slow the progression of the disease and hope for the best.


cameron
3 years ago

My hope is not that the general public will change their views (that would be a vain hope indeed!) but that all those neurologists who sit back with the wait-and-see attitude about MS are shocked into a more realistic view and get their patients onto effective therapies at the earliest possible moment.


mick
3 years ago

The programme showed that Debbie was pro life and wanted to protect those around her should she choose to end her life. I can understand her wanting to end her life to stop the pain. This was not through depression that I have had and come through. I was sorry that in the end she could not afford a more dignified end to life due to the fact that she had spent all her money living. She managed to get top people talking about the right to live a life of worth.


cazzzzzy
3 years ago

I missed this programme but will catch up, I would like to see it!

I completely agree with @sandwich too that people are too naive to just how devastating MS actually is! …

Jack Osbourne dancing around on tv doesn’t help the naivety – very happy for him but just wish the real knowledge was out there…

I am living life as much as I can right now but do hope the choice is there for me when the time comes – as Sandwich says my body, my life, my choice, my right!

Ok I’m off to catch up!

xxx


grahamjk
3 years ago

I’ve just downloaded the program and watched it on sky, and it’s so sad that such a brave and beautiful person as Debbie had to spend so much of her life which should have been spent with her loving husband fighting for the right to end her life as she wanted. Although I may only have relapsing remitting MS I do realise what COULD be waiting for me as my aunt after her first relapse was put in a wheelchair and only got worse, but this program still brought tears my eyes. At the end of the day as most people on here my body, my life, my choice, my right. Thanks all for listening


stumbler
3 years ago

You also have to take into account that Debbie probably didn’t have the benefit of the medical advances in treatment that are available now.

If she had, the story may have been so different…….


Anonymous
3 years ago

Don’t assume that the medical advances are enough or are readidly accessible. I have felt the desperation myself several times. I have hung on by researching the drug pipeline and participating in a clinical trial and always believing that MS is the most curable of neurological diseases. My experience though has been that neurologists treat MS with a minimal sense of urgency. They inexplicably believe that MS should be treated with progressively more effective DMDs. This is mind boggling! Disability comes in several forms and does not necessarily progress steadily, painlessly, or predictably. I have researched and always sought the most aggressive treatments for myself after unfortunately experiencing the pain and disability firsthand. The FDA’s newly approved Lemtrada is the personification of the practicing neurologist’s mindset in the US. Lemtrada was approved in the US after many years and millions of dollars in clinical trials but only as a THIRD line treatment Amazing!! Lemtrada represents a possible cure for the newly diagnosed that may never have to experience the pain and disability of MS. However, in the US, they must fail 2 prior treatments before they can even try it. And that’s in a country with private insurers and payers. I am one of the lucky ones. I failed 3 DMDs! Let’s hope for future patients’ sake that the next discovery can restore the damage caused by waiting for the 2 treatment failures required!


Anonymous
3 years ago

@stumbler DMTs may well change the natural course of the disease – I really hope so. Of course this doesn’t help PPMS and the many people which are not on a DMT. A recent post on Barts Blog states only 17% of MSers in the UK have been exposed to a DMT. 17%!!!!

DMT’s for CIS remain elusive. I’m one of the lucky minority on one and getting it was far from easy but that’s another story. Thank goodness for the internet as I wouldn’t know what I know and be on a DMT without it. Paternalism has had its day.


Anonymous
3 years ago

I do not know your healthcare system; but we are headed towards a single payer system. The evidence is already clear here that many decisions and diagnoses will then be based on finances rather than facts. Doctors for years have been giving a dx of RRMS to side step such issues with our current system. They know that many of the effective treatments are only tested on RRMS patients as they make up 80+ % of the dx’d patients. Big pharma cannot justify the added expense of trials with the other MS definitions. If I were not dx’d RRMS, I would be focused on getting another neuro and a dx of a relapsing form of MS. I have received all of the above MS dx for myself. There is no clear demarcation between definitions of MS. Lemtrada requires only a dx of a relapsing form and has been shown to help the most with many of the worse afflicted patients. I do not like playing games; but it is my life, and I am not going to quietly suffer and/or die without pursuing all avenues while I can.

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