Port anyone? (GDNF documentary.)


#1

The stars are us
Light up, just light up
Oh, the stars are us
Just look up, look up
Light up, light up
Oh, the stars, they are us
Just look up, light up
Look up, light up
Everybody needs a little hope

Take That

On Thursday evening I fully intended to avoid watching the BBC documentary “The Parkinson’s Drug Trial: A Miracle Cure?” because I was scared, I am scared. My fear of being given some hope is totally unbearable, as there can be no true despair without a sliver of hope. I don’t mind the pain but it is the hope that kills you. At least this is the way I defend myself from potential wounds. I have said innumerable times to anyone who will listen (but mainly to myself to reinforce the barricades) that the there will not be a cure in my lifetime. I cannot exist in any other paradigm than this, I dismiss other people with PD as old shaky feckers and whinging self obsessed moaners. I must, I need, to create a distance between them and me, cause I don’t really have PD, not like them. I am not like them, I can’t be. I just can’t.

Against my better judgement I turned on BBC2 at 9pm, even though I forbade my Mum from doing so. The programme was brutal, Roman Coliseum brutal and there is no exaggeration whatsoever. Forty-two patients chose to undergo complex brain surgery and have months of infusions via a port embedded into the side of their skull, some with a placebo and some with the glial cell line-derived neurotrophic factor. The surgery was medieval in its appearance, with nothing resembling a guaranteed outcome. Having access to the holy grail of GDNF was not even guaranteed. Yet these forty two warriors had given up their bodies with a faint hope of being cured and transforming modern medicine. There stories were heart breaking; Bryn Williams from Glasgow is still in his forties and has two children, just like me. But he is obviously not like me because they are not like me, except they are. Bryn verbalised one of my most deep seated fears, the stuff that keeps you up in the middle of the night for hours, the stuff the blights your waking hours too. What if I can’t walk my daughter down the aisle? This thought destroys me and apparently Bryn too. All I want to be is a proper Dad, surely that is not too much to ask? Bryn is willing to risk life-changing brain surgery for his girls. A warrior. A Dad. Just a Dad. I will not lead my daughter down the aisle in a bloody wheelchair, no way.

Tom Isaacs who set up The Cure Parkinson’s Trust 12 years ago was also one of the warriors who put their lives at risk for a potential cure. Tom had the most obvious and debilitating symptoms and the most to gain. However, Tom leapt off the screen, he was larger than life and had a world class line is self deprecating humour. A staggering example of the human species; resilient, indefatigable and optimistic, with the tenacity to make a difference for all those with PD, thanks. RIP Tom.

Tom’s wife, Lyndsey, spoke tenderly about her husband and how she was beginning to morph from wife to carer. This cuts straight to central truth about PD, it changes relationships, no matter how much you work tirelessly to prevent this from happening. I have told my wife she will not become my carer, I do not want my children to watch me disintegrate, I want to be turfed into a care facility if this highly likely situation were to occur, I don’t want to be burden and I want my three babies to be unencumbered by a father-shaped albatross and I want to them reach for the stars, not to have worry about me. Dramatic, a bit, but nevertheless I could not be more sincere, it is either care home or a one way ticket on Swiss Air. This is non-negotiable, they say that pride comes before a fall, well they are are too late, that ship sailed years ago.

The next group of warriors we met were the medical professionals. They were extraordinarily skilled, driven and fundamentally good people. Professor Steven Gill, and the trial’s principle investigator neurologist Doctor Alan were the talking heads of the documentary, but far more significantly the whole process was their ‘brainchild’ (apologies for the pun). In 2012, the doctors from Frenchay and Southmead Hospitals in Bristol recruited volunteers to participate in a £3m trial, ending in 2017, to tackle the world’s second most common neurodegenerative condition. Ultimately, the decision on the future of GDNF will be based on commercial viability and the effectiveness of the treatment compared to other therapies for Parkinson’s. The good news is that Pfizer has bought itself an exclusive, worldwide option to license MedGenesis’ glial cell line-derived neurotrophic factor (GDNF) protein and convection enhanced delivery (CED) technology for use in researching Parkinson’s disease treatments. Big pharma does not have a conscience and is solely in it for the shareholders, so Pfizer getting involved can only be a good sign. Pfizer had in 2018 revenues of between $53 billion and $55 billion, they don’t make too many bad bets, hopefully.

Has my paradigm shifted? Too early to say, being a stubborn and single minded bugger has worked reasonably well so far. I am not sure that I am brave or strong enough to embrace hope like Bryn & Tom were. I am not sure that I am a warrior like them. They were able to see the light that I am scared of. According to Desmond Tutu ‘Hope is being able to see that there is light despite all of the darkness.’ Maybe I need to open my eyes a little wider, but what if the light has been extinguished? I am not sure I can take the risk.

Michael


#2

Im like you I watched the bbc 2 programme and then wished I hadn’t . Ok it was encouraging that research is ongoing but it was the stark reality of what the future looked like was a bit too much .need to hold onto the fact that meds are working and I look and majority of the time function ok .

Diagnosed at 56;5 yrs ago


#3

We too watched the programme with very mixed feelings…my Husband is the person with PD…so we could be relate to from different angles…
Since the programme was aired many of our friends have been in contact to talk about this miracle cure…and how my Husband will be cured! Unfortunately it is not like that in real life, IF a cure and WHEN a cure is found it may not be an option for everyone…just think of the cost of all the operations etc etc for everyone with PD…it will no doubt become a postcode lottery as to if your NHS will fund it…and how many people who actually fit the criteria?


#4

Michael, your post came up on a Google alert I have on the name of the series and I just popped in to say: if you can write like that, you are indeed a warrior. The very best kind of keyboard warrior… :wink:

Thank you. It really moved me.

Jemima
(Director “The Parkinson’s Drug Trial: A Miracle Cure?”)


#5

At my Parkinson Gym Class we discussed the tv programme. I could be wrong, but my perception was that we were all terrified at what is to come ……… I am better going into things head on, not knowing helps me keep strong - just fighting one day at a time.

But these people who took part in this trial are and continue to be hero’s. I am in total awe of them finding the strength of going into the trial not necessarily for their benefit, but, for the benefit of each and every person who has this terrible decease and for those who will one day be diagnosed with PD. True Warriors, true hero’s

One of the group did say that coming every week to our class and the closeness and warmth of the group helped this person to find the strength to watch the programme. I am sure this person held the view of many in the class. In essence, we as a group are warriors too.


#6

Hi there Babesbrown.

I totally agree with everything you have said?

Babsx


#7

I watched the 1st part, downloaded and read the paper and will watch the 2nd part. I’m optimistic that we’re closer than ever to something that will make a big difference. I’m realistic that it will be some years yet.
It’s my wife who has P.


#8

Your still in honeymoon period at 5 yrs x sadly it doesnt last
We didnt do this lightly


#9

Sadly ur right, as it stands
The pd community need to unite and fight
Time for urgency x


#10

Keep the faith and never lose hope x


#11

Eve1 I completely agree with bursting into each day and tackling PD in bite size chunks.
I started to watch the programme and managed 20 harrowing minutes before I had to stop, burying my head in the sand works for me.
Diagnosed in 2010 at the age of 40, I cannot bear to see people with PD, I don’t want to know what the future brings, I can’t handle it.
From what little of the programme I saw I salute the wonderful participants from the medical teams and those willing to be involved in the trial, both of which are extremely brave andhave my admiration.


#12

You are very brave Michael, to open your heart in a public domain, never forget that. My husband feels just as you do about his illness. He has had it for 20+ years, and still struggles to live as normal a life as PD will allow. My only regret, regarding advise, was the lack of emphasis on how important exercise is. It is what keeps him going now, but would have been far more long term beneficial, if he had done more in the earlier days. Concentrate on the goal of walking those lovely daughters down the aisle!
He saw Stephen Gill many years ago, and was told to come back when he was 80! His tremor was not bad enough then to do the DBS op. He did advise taking Co enzyme q10, which has helped him, also he takes CBD oil now, again, I think it helps.
Good luck!


#13

I think you speak for us all. My response to the second episode was a string of turrets not repeatable here. I finally gave up my business last week. I could no longer afford to pay people to do the work I couldn’t. I now also face financial problems as I’m only 60 so can’t claim a pension and being self employed I can’t claim benefits. My wife’s a real support although she too has health issues. I would put myself forward for any trial. Even though I know in my heart nothing will happen in my life time. I want my Parkinsons to at least benefit others. Keep strong all you parties


#14

The Parkinson’s Drug Trial: A Miracle Cure?
Wow where to start- firstly Thankyou to the sufferers who put themselves through the trial, thank you to the scientists, engineers, doctors and their teams including the BBC for bringing this into people’s homes. But also Thankyou Michael for your heartfelt thoughts expressed so well.
My husband has Parkinson’s Disease and could not watch the programme he started to but broke down and said it meant to had to own up to really having Parkinsons and felt the nails going into his coffin. He too desperately wants to remain my husband the man I married 33 years ago and it is slowly breaking both our hearts as we slip into my becoming his carer. Michael I and everyone hear your non negotiable wishes to be plonked into a care home, if only it were as easy as that (as I suspect you are really very aware of?!)
I’d give everything to have the chance of my
Husband receiving the GDNF drug, as I know he would too. The chance to have any part of him back that has been taken away would be like winning the lottery even if it were just him getting his sense of smell & taste back. Or more wonderful still to get his facial expression back would just be the best thing ever. Of course I could go on because absolutely any improvement would be grasped and welcomed or quite frankly just a stopping in further deterioration. I am of course hoping for everything that all Parkinson’s sufferers (even the one’s in denial, yes including my husband) and their families, loved ones hope for. I hope upon hope that Pfizer put money into a further trial ASAP !!!
Now please someone tell me where can we sign up for the trial now because that will be what thousands of sufferers are now searching for the information to do.
Till then Michael Keep expressing yourself and enjoy the love it sounds like you are surrounded with - Best Wishes Jane


#15

Hi @Plus1,

Edited by moderator to correct grammar.

My thoughts go out to you and your husband, we know the documentary was a hard watch for a lot of people especially those with the condition.

The GDNF results recently published were complex and although many of the participants seemed to benefit from GDNF the trial did not meet the requirements to deem the study scientifically significant and therefore the results were inconclusive. However, the trial seems to offer some hope that GDNF may restore the cells damaged in Parkinson’s.

To further investigate GDNF this would mean planning another clinical trial. This trial would need to address the challenges and questions raised by the recently published study and this comes with a huge number of factors to consider - from what dose to use and how best to measure the effects of GDNF, to assembling the right team to deliver it successfully.

At this stage we can’t say when or if there will be a further clinical trial for GDNF as it’s essential that we invest proper time and effort in to fully understand and review possible next steps with partners and the Parkinson’s community, alongside looking at the funding that would be needed.

Because we do not know whether there will be a future trial we will not be collecting names of people who are interested. However, we are committed to driving this research forward as quickly as possible and will continue to communicate updates on GDNF through our website.

In the meantime, if you are interested in taking part in other research studies please visit our postcode searchable Take Part Hub for opportunities happening near you.

I hope this answer your question.

Best wishes,
Reah


#16

I closed my eyes wondering whether I would wake up that was a risk I was prepared to take.I wanted to improve my life.10 hours later I was awake in recovery. Looking like a battered pixie.A pointed bandage covered my wound and port. My pixie hat was a crepe bandage. A black eye and half an eyebrow. Bruises no doubt from being moved around in theater and in and out of scanners.The science for me didn’t matter I wanted a slice of the cake GDNF.
Infusions commenced and every 8th week medication was withdrawn,I had the humbling experience of having to be cared for and needed to use a wheelchair.I felt no benefit whatsoever from any of the infusions.
Next phase I get GDNF and 3 infusions later there are changes, only one of which I mention here. I could take myself from home to Bristol no carer 500 mile round trip, I got myself to the Hospital no wheelchair.
GDNF worked for me.Was it worth it yes it was,I learnt much about my Pd and I have hope for the future development of GDNF


#17

Without very brave people where would we all be
I salute all the wonderful people involved in this GDNF trial front and back stage
Yes it was heartbreaking to hear the funding was withdrawn but I have hope they will find the funds for stage 3
We all need to donate what we can
Every penny helps