Belated comment re the programme - I also objected to the way it was trailed and promoted in the Has a Cure for Parkinsons been found-approach, the two part ‘cliffhanger’ element and the overall sense of not knowing until the end. As someone with PD it was a difficult watch and upsetting, I figured early on that we would have heard earlier if a major medical breakthrough and treatment had been found, and yes I do my research but there’s not enough hours in the day to research and know everything. Im also utterly fed up with claims of ‘do this exercise regime it will slow your PD down’ by able-bodied money-hungry motivational nit-wits - its cruel to make these statements to people like us who will try anything for improvement of the wretched symptoms - well prove it through scientific research. I have worked in television for over 30 years and know their ways and the BBC operate in a competitive market so promoted it in this way to get the viewing figures up - ok to watch if PD doesn’t affect your life but upsetting and difficult if it does. Please do make your opinions known to the BBC complaints link - its your money they’re spending
For what it is worth I felt that GDNF does give hope, there were people in this trial whose quality of life was greatly improved. More needs to be done to get GDNF going again as this is the most positive thing to have come about in recent years. It is sad that Pfizer withdrew funding as there is a lot that could be achieved with it.
Les
Does anyone know if Parkinson’s UK is doing anything to find a new company to fund the third trial?
Is there anything that the suffers of PD can do to try and make a third trial happen?
Hi @SamA,
We’re excited about the future of GDNF as a treatment for Parkinson’s. And we’re fully committed to exploring the potential it could hold.
Now we need more research to take GDNF forwards and we’re working with the scientific team, companies, charities and patients to explore possible routes to further studies.
For further information on how you can help us fund research , please visit our website here - https://www.parkinsons.org.uk/research/clinical-trial-gdnf?_ga=2.219520089.1150163279.1553247784-650926728.1511215693.
Best wishes,
Reah
I totally agree except that I had to turn off tv after 5 mins of watching episode 1 I had a feeling it was going to be an upsetting negative conclusion but I ende up watching all of the second part and have to say was not expecting it to be as bad an ending as it was .
Who the hell authorised this completely deppressing hopelessness of a programme that as many on the forum have said played with the idea in the 1st episode with peoples hopes and futures ? WhAt was the point of the programme ? Do they think it’s ok to toy with a question Parkinsons miracle cure ? Or something similar I already figured out that it wAs not going to end well because we would have heard about the drugs potential game changer by now and not have to wAit a week to find out the depressing really that they are no nearer to finding a much better treatment than 5 years ago . But although that crap should of never been aired ( whAt was the point of it all what ?) you have to commend the patients bravery in taking part in having half their skulls removed it was appalling to see and deeply sad and had me in tears I have been diagnosed ;4 years ago but have had it longer they suspect as I was told it was an essential tremor for 3 years by my retired GP who actually was always right when diagnosiing my ailments over the years except this time how I wish he is right and the Parkinson’s consultants are wrong and made me worse from levadopa not Parkinson’s I wonder if this has eve happened before were they misdiagnose someone with Parkinson’s get them on levadopa and it’s that which is making them worse not Parkinson’s but an essential tremor After all I wonder if they have made the misdiagnosis although I was assessed by two different consultants the first said he suspects Parkinson’s the second said confirmed it but they only did tests like hand cordination and legs etc and it has got much worse since I set foot in that hospital they haven’t made me better they have made me worse is that normal ? Doesn’t make sense does it ? I thought I would be feeling better but it’s been much much worse than before I stepped foot inside those hospital doors I don’t understand that sorry being selfish and talking about me when it should be about those poor people And the horrific mess of their skulls being opened up it was truly deppresing and not even a bit of hope whatsoever hey should not have showed it what was the point of it dont they care about the thousands of sufferers who were upset and left feeling hopelessness I do think they will find some better treatments but in ten fifteen years time and it will be slightly better than we have now that’s what I think I hope I am wrong I really do let’s see and hope I am .
Hi @stevo,
I’m really sorry the documentary triggered these emotions in you. As explained in my earlier post on this thread, we wanted to ensure that any portrayal of Parkinson’s and the GDNF trial was accurate, balanced and fair, as our primary concern was the needs of people with Parkinson’s. We considered the questions and concerns that the documentary might raise throughout the process of providing support and advice during the filming process.
For example, as soon as we became aware of the title of the documentary we strongly voiced our concerns that it may raise false hope for people affected by Parkinson’s. I’m sorry if you felt as though the documentary should not have been aired, however, ultimately how the documentary film footage was edited and presented, and the title chosen, was a decision made by the BBC.
I’m also sorry to hear that your condition has worsened since your diagnosis, have you raised this with your GP or Parkinson’s nurse? if not, I would encourage you to raise your concerns with them as they may need to review your medication. As always, we are here to support you so do feel free to give our free helpline a call to discuss your condition so they can offer you additional support on this.
You can contact us on 0808 800 0303 or email us at [email protected].
Best wishes,
Reah