GDNF What Happened Next

Hello to all of you,

I just wanted to let you know that my next book ‘GDNF What Happened Next’ is now available at Amazon.co.uk as either an e-book, paperback or hardback. It brings my GDNF and Parkinson’s experiences right up to date, here is a brief synopsis;

‘Andy had been Participant 066 in the ‘failed’ Bristol GDNF trial to see if his Parkinson’s could be slowed, stopped, or reversed. Unbelievably, his had been reversed and then his ‘cure’ was taken away.

Distancing themselves from the fallout of a ‘failed’ experiment the scientific world abandon the participants with no planned aftercare and an experimental device still implanted within their brains.

Andy continues his personal GDNF journey whilst coming to terms with the repercussions of the trial and the increasingly downward spiral that his own Parkinson’s takes.

In the mean while the GDNFer’s relentlessly pursue their hopes for a new trial, asking the questions no one wants to answer and trying to persuade the experts to reassess their thinking.

The Group unites the Parkinson’s world with a nationwide event they organise, which raises money and awareness of neurotrophic factors, such as GDNF. The Group slowly begin to earn the respect of science, their knowledge and experiences are valued by some researchers and the GDNFer’s  help to shape two major clinical trials they ask for a seat at the table of all things GDNF, but are still not welcomed by some.

The group become involved in the design for a possible new GDNF trial, but it is a rocky road and who knows if they  will reach the destination and if they do, when?

Are they being unreasonable?

Are they asking for too much?

Regular viewers of my posts will know of some of the many, many events / incidents that have occurred during my GDNF journey. Some happy, some sad, scary, worrying, upsetting we have covered most emotions.

To find out what actually happened go to amazon.co.uk  and search for ‘GDNF What Happened Next by Andy Rollin’. Available as an ebook, softback and hardback. All proceeds going to the fund.

Thanks for reading this.

Best wishes,

Andy Rollin

Andys original book "GDNF What happened to me" is still available from Kevin at Face2Face Parkinson's.

The GDNF UNIFYING Challenge

Keeping the hope alive for People with Parkinson’s

Imagine that you had risked your life and been treated with a new protein via catheters installed in your brain, to cure a chronic condition. The treatment was effective, improving your quality of life; and then it was taken away and declared a failure by the researchers, scientific community and sponsoring organisations.

That’s what happened four years ago to 42 participants in the Bristol *GDNF clinical trial, when all directly involved in the trial could see the improvements (as shown in the award winning BBC2 documentary ‘Parkinson’s, the miracle cure?’) and all believed in its success. However, the technical results showed the trial to be a failure and treatment was stopped.

Since then, the Participants have continued to campaign for the return of GDNF and further trials. We, with the help of our friends, have managed to turn the heads of the scientific community from ‘no chance’ to, ‘shows promise’. We have influenced the Parkinson’s UK charity to be proactive in seeking a way to look again at the trial and find another way.

The Participants have issued a Challenge not only to raise funds for research and to bring the community together, but raise public awareness of the fastest growing neurological condition and the need to review neurotrophic factors, such as GDNF, as a game changer.

Face2Face Parkinson’s Community Interest Company, are delighted to be supporting the Neurotrophic Ninjas in the GDNF Participants Unifying Challenge this April 1-10. Make a donation and sign our on-line petition; look for Neurotrophic Ninjas at www.gdnf.org.uk

*GDNF = Glial cell line-Derived Neurotrophic Factor. A growth factor that has been shown to help regrow the cells in the brain that die prematurely in people who develop Parkinson’s. First trialled in 2000, it has shown since with novel delivery systems to improve symptoms before also being withdrawn suddenly and devastating the participants involved with the trial.

Please read on for an engaging journey from diagnosis to new hope, from our Director and GDNF participant Nic Mortensen

"After graduating with a Masters degree from the University of Southampton I began my career in industry, designing and manufacturing telecommunications equipment for civil and military customers, at Racal, and obtained Membership of the Institution of Mechanical Engineers, I.Mech.E.

After a change of employer to BAESystems, I progressed through project and supplier management of military communication projects and functional management of multi-disciplinary engineering teams and departments. More recent roles have been as Head of Aerodynamic Test, Chief Engineer and Business Manager to a number of projects within the Airbus single aisle programme A320. My claim to fame is the introduction of winglets and Chief Engineer’s role on the development phase of the neo project.

More recently I now sit on the MOVE Health Integration Team chairing the patient-public involvement group for movement disorders services at Southmead Hospital and I am now a Fellow of the Institution of Mechanical Engineers.

I was diagnosed with PD in 2003 at 43, the clearest symptom of which I was aware of was micrographia (hand writing becomes very small and spidery), which prompted me to seek medical advice. I can probably recognise symptoms from around my mid-thirties.

Despite the attempts of the GP and private consultant to keep me poorly informed, I made contact with the Bristol branch of PUK where I met people in a similar position; still working, young families etc. who couldn't spare the time to get heavily involved with the branch, and partly did not want to 'face' a room full of people that could be the future.

I continued working for ten more years, before I took retirement, as the symptoms became progressively difficult to deal with, (muscular rigidity is my main symptom, little or no tremor, anxiety (depression?) and had total dependence on medication, which I take every three hours.

Through the association with the branch and the neurology team at Southmead I became aware of the GDNF trial. It was at the forefront of research in to finding a cure for PD and sponsored by PUK and the Cure Parkinson’s Trust, of which the founder, Tom Isaacs, was on the trial. After a fairly rigorous assessment of health, memory, cognitive ability, reaction times, etc. Alan Whone and Lucy Mooney said ‘you are an ideal candidate and you don’t need to do this’. Too late, I was tail-end Charlie for most of the next 18 months of a double-blind trial.

Then the operation to install the delivery kit in my brain consisting of a port on the outside, secured to the skull, with 4 catheters to the front and rear of the two putamen, the dopamine producing areas of the brain. The path of the 4 catheters is plotted and steered via a robotic arm to miss anything vital.

Not first on my list of priorities when I came-to in the neuro ward at Southmead, with a turban of bandages on my head, and the mother of all headaches, was Steven Gill the surgeon’s request for the BBC to film the op for training purposes! After several rounds with the nursing staff over pain killers, ownership of my medication and a debate as to whether I could be released over Easter weekend, I eventually left the building thanks to Lucy’s intervention to restore some calm. Much that the neuro ward nursing staff could learn from the GDNF trial nurses.

In time the staples were removed and I was ready to go. 18 months of monthly infusions via the port connected to four ‘syringes’, a bit like something out of the MATRIX, if anyone asks! 18 months of alternate off and on meds video assessment interspersed with MRI scans, blood samples, reaction tests etc. and reams and reams of paper work. 18 months of sitting in the arm chair for 3 hours every month with one or two recognised faces amongst the recipients but getting to know the trial nurses who were just fab. I recall Alan dropping in to fit the connector to the port (just to keep his hand in I think), and being relieved of the duty by the nurses when he was trying too hard.

The worst, but possibly most evident test, is the PET scan of the putamen at the beginning and end of the trial. An off-meds taxi journey to Cardiff, radioactive tracers, and lie absolutely still for 45 mins whilst we play Beatles music at you; not fun. In the end it turned out to be worth the effort!

During the first 9 months 50% received the placebo and 50% the GDNF, only the pharmacist knows who. In the second 9 months we all received GDNF. After 9 months I noticed the increase in my energy levels and was able to reduce some of my medication which helps minimise side effects, such as dyskinesia.

My progress with GDNF was noticeable and not just to me. My wife, Caryl relates that, apart from the cats food bowl always being full to overflowing, I was able, off meds, to get up washed, dressed and breakfasted and to and from the taxi taking me for assessment and infusions, unaided. At the beginning of the trial I needed help, and a wheel chair ride at Southmead.

...and then I was introduced to Nordic Walking, great for everything head to toe……. and as a result of the GDNF infusion I got it all, never been so fit or had so much energy. I NW'd the 2016 Bristol 10k in 1hr 22 mins. Continued to attend classes twice a week with Bristol NW before covid.

I had the energy to help develop a weekly non-contact boxing class (I have only hit the coach once!) at the Broad Plain gym and support the introduction of PD warrior classes which consist of a variety of high speed, large amplitude movements.

Then the results were in and the hard work began. The volumes of paper data meant it took a long time to process. The results took even longer to resolve, Pfizer were rumoured to be considering whether to sponsor a much larger trial but pulled out….and then Alan had to present the results to his peers and based on the test hypothesis set in the UPDRS, it was shown to be a failure. The documentary shows how the attendees were just dumbstruck and could not believe it.

We had an overall group feedback in June at the Bristol Hotel, where we met others for the first time and recognised that we all thought the GDNF was beneficial despite the results. We hoped that the documentary would soon be aired to keep the ball rolling, however it could not be released until the technical papers had been published (BBC2 two part documentary planned for June 2016/7 was continuously delayed to Spring 2019)

There was great disappointment in the group; Alan had to keep rewriting the reports to satisfy the publications and demonstrate a positive outcome despite the results. Eventually Alan was accepted by a forward-looking publication that recognised the success of the biological results in the growth of cells in the putamen. In my case approx. a 25% - 30% increase in dopamine producing cells, identified by the PET scan.

My last infusion of GDNF was January 2016; since then, I have had to increase my meds beyond the stage before the trial. I couldn’t make it to the front door let alone to a taxi when I am off, and it is becoming increasingly difficult to maintain the exercise classes, both mentally and physically. The cat goes hungry.

There is a bright spark however that would not die, and in hope and adversity we regrouped and began to campaign to improve the measurement system, provide meaningful patient input to trial design and start the next trial. So four years arguing for GDNF to be revisited to consider the biological effects and the views of the recipients… and for some of us, the possibility of obtaining further GDNF. We just needed to find someone to believe us.

From being tagged with placebo effect, told by the CEO and Research Director of PUK that GDNF doesn’t work, and excluded by the scientific community we have turned the super-tanker around and are influencing its direction. We have a strong relationship with the Chair of Trustees at PUK, and have influenced their process by driving the charity to actually be the leader of research into GDNF, (and other neurotrophic factors) by being proactive and taking some managed risks. Members of the scientific community are now supporters.

So the 5 members of the GDNF participants working party (WP) have led the group to where we are today, and I am proud to be one of them. We are witnessing a change of leadership and approach at PUK and because of this the potential of further GDNF trials. If there was a placebo effect it has long gone now!

The Challenge is intended to raise awareness of the PD pandemic, growing faster than any other neurological condition, and the effectivity of GDNF in changing people’s lives. "