Flying the flag, and raising support

At PREDICT-PD nothing we do would be possible without our funding from Parkinson's UK. In clinic, we know how invaluable the support they give to people with Parkinson's all over the UK.

I have just received a wonderful phone call from Parkinson's UK, offering me one of their places in the London Marathon 2019. 

Please help me make groundbreaking research a reality, bring us closer to a cure, and provide life changing support to people with Parkinson's, by sponsoring me at here 

I'm aiming for a Good For Age time of under 3 hours, smashing over 20 minutes from my previous record. Every donation will spur me on through training in the long winter months between now and April. Follow my progress on Strava. Last weekend was my first 20 miler since the 2015 London marathon, and this Sunday I'm running in the Wimbledon Half marathon.

Wish me luck!

RNR

Real life: Parkinson's and relationships

Warning: this post contains no statistics.

Several friends have recently suggested I listen to a podcast series, "Where should we begin, with Esther Perel". It is a podcast of relationship therapy sessions between couples and the host. The very last episode of the series (series 2 episode 8) is about a couple where the husband has early onset Parkinson's.

In clinic we see patient's for as much as an hour and a half (if they're lucky) per year, leaving the other 8,760 hours per year without our support. In the time with us we focus on their agenda and our agenda - tremor, swallowing, falls, cognition, stiffness, slowness: the list goes on.

The minefields we don't (and probably can't) help them navigate though are vast. From the existential to the personal. Love, sexuality, closeness, meaning - these are not problems we can address in five minutes on a Tuesday afternoon in clinic.

Parkinson's specialist nurses are an invaluable bridge between specialist clinics and 'the big wide world'. Parkinson's UK provide excellent support around the UK to people with Parkinson's and their partners. But the greatest support we each have is those around us - if only we can develop the vocabulary and resources to engage with our families, our partners, our friends.

If you have Parkinson's, or if you know someone who has Parkinson's, I strongly recommend giving this a listen.

(also available on iTunes and other podcast providers)
 

To boldly go

An article on the BBC news website has prompted me to write a post that I’ve been considering for a while. 

Billy Connolly, the edgy and flamboyant comedian, has been an outspoken supporter of research for a cure for Parkinson’s. He was diagnosed with the condition five years ago. This week he has publicised that he is willing to be a ‘guinea pig’ for a stem cell trial.

Irony, foreshadowing or mere coincidence?
Picture from http://bit.ly/SundayPost100

I have been asked about my 'stance' on stem cell treatments for Parkinson's in clinic, and I confess to not having a 'stance'. The reason for this is that the state of the science is truly in its infancy, certainly in terms of deliverables for people with Parkinson's. This is not to diminish the decades of work that have led us to where we are, but even heroic gestures, such as Connolly's will only inch us forward in the marathon that lies between now and the New Era of stem cell treatments.

In preparation for this blog post I have read an update from the recently established GForce-PD network: a network of researchers from around the world who are working together to bring stem cell treatment closer to reality. An excellent (technically written) history of the subject can be found in a Nature Reviews article written by Prof Roger Barker from Cambridge.

Landmarks in the history of stem cell treatment of Parkinson's.
From Nat. Rev. Neurol.doi:10.1038/nrneurol.2015.123

As a brief overview, stem cells can be derived from a 'matched-donor' - in a similar way to  how organ donation works currently; from embryos, which has both ethical and immunological issues; and from the individual themselves.

Different sources of stem cells
from https://doi.org/10.1016/j.stem.2017.09.014

They are then surgically implanted into the area of the brain that is most affected by Parkinson's, where they grow and develop into (hopefully) fully functioning dopamine-producing cells. In essence, the aim is not just to mask the symptoms like current treatments do, but return the individual's brain to how it would be functioning without Parkinson's.

I want to focus attention on one aspect of the discussions of this group as it has particular resonance with PREDICT-PD. There is a very difficult decision regarding whom to choose as participants in a trial of stem-cell treatment. Do you choose participants who've only recently been diagnosed, or do you choose people in later stages of the condition?

Some arguments for 'earlier' intervention is that these individuals will be physically fitter so at less risk of the initial surgery, and be better able to tolerate the immunosuppression required. They would also have longer to reap the benefits of their investment, and given that this kind of intervention would be at great financial cost to a health system, the payer (be that the NHS or any other health system) would get the best bang for its buck.

However, these arguments only hold water on the assumption that it works. The flip side of the coin also applies. A big fear of stem cell technology from the early days of the field, is that the new cells go outside the normal control systems of cells and develop into cancer cells. This might prove worse for someone that the slow progress of Parkinson's left untreated by stem cells. The immunosuppression also has long term risks, with unusual infections, or usual infections presenting in unusual ways. 

What about the other option? Individuals with more advanced disease have more physically measurable symptoms, and so less time is needed for a (very expensive) clinical trial to show differences between treated and untreated (or sham procedures). Given the risks outlined above, it could be conceived that stem cell treatment is a 'last-chance saloon' treatment that should be embarked on only where more established treatments have failed. We have written about the personal costs Parkinson's on this blog, and that as the condition advances the costs spiral. If stem cell treatment is withheld until later in the condition, there is a greater chance that the cost will be offset by savings in other areas, as the need for more help reduces with a return of independence in multiple areas.

There are no perfect answers. It is essential that a global effort is sustained to get us safely, ethically and rigorously through the choppy waters that lie between now and a time when stem-cell treatments are as commonplace as other treatments for Parkinson's.

RNR

Participant article

Today I have the great pleasure in posting an article written by one of our amazing participants. This gentleman has been with us since the beginning of PREDICT-PD. He's come down to London (from the North-East of England) three times for in person and imaging assessments. His involvement has been incredible and a ready reminder to the whole study team how selfless and generous with their time all our participants are.
He has now written an article for the local Parkinson's UK support group newsletter about his experiences with Predict-PD, and the most precious gift he can give in the fight against Parkinson's: his brain.

Here are his own words:

I joined Parkinson’s UK many years ago after my sister, Pat Berry, founder and long-time president of the Scarborough branch, was diagnosed as a sufferer. I was co-opted onto the committee as press and publicity officer, a post I held till after a year after she had to give up the presidency because of failing health.

Around eight years ago I received an email from Predict PD, a research group funded by the Parkinson’s UK. They were seeking people without Parkinsons to sign up for the research project. One of the areas on the research list was for unaffected siblings of people who had Parkinsons. Intrigued I put my name forward and was one of 1,000 people put onto the research list.

Initially it was on-line questionnaires and keyboard tapping tests to check for speed of hand movement.

This was followed up by smell tests, as loss of smell ability is a common feature of Parkinsons. This was conducted by a booklet which I had to scratch and sniff to identify one of the listed items. This was later updated by the sniff booklet but giving the answers on-line.

I was visited here in Scarborough by Dr Alastair Noyce, who headed up the research team, where he conducted tests on memory, movement (including walking and turning while he recorded the result on camera), and nerve reactions.

Subsequently I was asked to go to the University College Hospital, department of nuclear medicine, in London to undergo a DATScan. This meant having a radioisotope injection, and then undergoing a 20 minute head scan by a specialist brain scanner. The isotope lights up the nerve endings under the skull, and the subsequent computer readings show up areas where the nerves have died. This is a useful indicator of confirming whether patients have Parkinson’s or some other brain condition.

This year I was again asked to go to London to the Department of Neurology for further tests. This was an ultrasound scan, performed by Dr Richard Rees, who has now joined the research team. A gel was rubbed on to my left and then right temples and the hand held scanner was then applied to my temples, and the subsequent pictures taken were then downloaded to the computer. At one stage I was able to watch the computer screen and could see my brain and the arteries feeding the blood supply. 

This means that I have now seen my brain in operation and my heart beating when I had two stents fitted in 2005. I feel very privileged to have seeing how my body works.

I then had an MRI scan on a new machine, which has a magnetic strength 60,000 times more than the gravitational pull of the Earth. I was inside this scanner for 50 minutes while the images were taken of my entire brain, again extremely useful in diagnosing Parkinson’s, Alzheimers, dementia, or brain injuries from accidents.

So I then came to a momentous decision. Predict PD now have around two hours of computer images which they can examine and compare to brain scans of Parkinson’s sufferers.

Brain scans and questionnaires are incredibly useful for researchers. However, having the real thing to look at is the only way to unlock the real secrets of the brain, and to allow specialists and tomorrow’s specialists to advance their work in helping patients.

So, though this can be a very private thing which most people would probably not be prepared to talk about, I have signed up that when I die my brain will be donated to the Queen Square Brain Bank for use by the research team. This is a basic pathology procedure that leaves the body with minimal visual damage. The eyes are not removed, and the body can be viewed without anyone knowing that the procedure has taken place.

As I have left instructions that I am to be cremated and my ashes buried in the family plot along with my sister and parents, I decided to make this donation rather than destroy something that could be useful to the research team.

Although at 79 years old, I do not apparently have any detrimental brain conditions, my brain is then useful as a control model which can be used to compare the damaged areas of Parkinson’s sufferers who are under treatment.

I feel an overwhelming aura of peace that part of me will live on after my death and I can continue to be of use to society.

My reason for writing this article is to, hopefully, encourage anyone in the Scarborough Group who is affected by Parkinson’s, to follow me and sign up to Brain donation. After all, it is only by ongoing research that any chance of early detection and prevention of the condition can make effective progress.

Even if only one person joins me in this it will make my decision to go down this route worthwhile.

The Predict PD team is embarking on a further research programme and are currently seeking to recruit 10,000 people without Parkinson’s to extend the research and help find ways of identifying Parkinson’s at the very earliest stages. If you would like to sign up for this the contact is support@predictpd.com

For any member wishing to join me in the Brain Bank donation the contact email for the information details and application form is :  l.haddon@ucl.ac.ukor telephone 02078378370 and ask for Lynn Haddon.

An early diagnosis is not the same as a timely diagnosis of Parkinson’s disease

We do research to find answers to questions. These can be very practical or extremely esoteric. Both are vitally important – from studies that establish the best treatments for a disease to theoretical mathematics. Some research has immediate practical value, whereas some may not have any known economic benefit for years (for example the computer that I’m writing this on and you’re reading it on could not work without our understanding of quantum mechanics).

So if research can answer the ‘how’ questions, what about the ‘why’ – or even the ‘whether’ questions? These can be the ethical, social and philosophical challenges that cannot be easily answered with a randomised clinical trial, meta-analysis or other statistical constructs, yet must be addressed with almost all research outputs. Dolly the sheep was cloned in 1996 – we can clone a large mammal; but should we? The Manhattan project harnessed the power of the splitting of the atom in the 1940s, but such discoveries have only been used twice in wartime. We have discovered genes that hugely increase one’s risk of certain diseases, like breast or ovarian cancer, that are present from birth – but societies’ current rules exist to prevent testing children for many of these conditions.

We have just published a paper that tries to address some of the ethical and social challenges that affect our work. Parkinson’s remains a progressive disease with no cure, and yet we (and many others around the world) are working hard to make it easier to diagnose Parkinson’s at a much earlier stage. With infections and cancers, the axiom that earlier diagnosis is better for the individual holds as earlier detections leads to earlier treatment which is more likely to result in cure. However, that logical end point does not yet exist in Parkinson’s. Our position is that while research may well provide the tools for earlier diagnosis of Parkinson’s, the physician in clinic should not blindly use those tools, but engage in a dialogue with their decision-making partner – the patient. All medical interventions bring benefit and risk – and the art of medicine is in explaining both and finding the right balance. This is clear with major operations where both parties literally sign on the dotted line that they have discussed and accept the proposed benefits and risks. But the same is true even for making a diagnosis: benefits include knowledge of what is causing distress, discomfort and disease, access to potential treatments and support, planning for one’s future with understanding of how one’s life might change as a result of the condition; but there are risks too – social and personal stigma of disease, higher actuarial risk resulting in more expensive insurance products, fear of effects or side effects that may never happen and many more. Each patient brings their own history, agenda, hopes and fears to the clinic, and a one-size fits all approach cannot be used.

The paper is open access and we would love you to read, share and comment on our article. As Western societies have an increasingly older population, and some data suggesting that Parkinson’s is becoming more common, we all need to grapple with questions like these: who should be diagnosed, when should they be diagnosed, can we afford possible treatments – which risks will we accept and what benefits make those risks worthwhile?

The article can be found here– An early diagnosis is not the same as a timely diagnosis of Parkinson’s disease

RNR

Public Engagement

I had the great honour and privilege to be asked to speak to the Parkinson’s UK Barnet and Brent Branch last night. This was the second time I have had this opportunity to meet and engage with a wonderful group of people.

At PREDICT-PD we are working tirelessly to understand more of the ‘prodromal’, ‘premotor’ or ‘prediagnostic’ stage of Parkinson’s [these are all largely interchangeable terms for the period where Parkinson’s is present in the brain and causing mild, often non-motor symptoms]. However, there is little public or academic conversation about the public ‘appetite’ for moving the point of diagnosis from where it currently sits.

After a brief introduction to the topic, I sat back down, and picked up my notebook and invited the group to engage in a conversation and share some of their thoughts and experiences. I was humbled by the honesty and candour shown by many people with Parkinson’s and their family members.

Some clear themes came out of our conversation:

• ·     Receiving a diagnosis of Parkinson’s is a pivotal moment in a person’s life. As clinicians, the way we offer the diagnosis has a deep and lasting impact that will be remembered, not only by the individual, but by their family for decades. I heard some wonderful stories of good practice, where clinicians had taken their time, been thorough and provided a supportive and accurate diagnosis. Others unfortunately had not been so lucky, and had the diagnosis changed many times or left totally unsupported after a brusque diagnosis. I could only apologise for these experiences. I did also reiterate that Parkinson’s is a clinical diagnosis, with no perfect test in life, and the evidence suggests that even the best experts get the diagnosis wrong 15% of the time.
• ·     So many people last night spoke of the power that comes with acknowledging Parkinson’s, not only to themselves, but to others around them. Telling the ‘tutter’ behind you in the queue at the supermarket that you can’t ‘hurry up’ because you have Parkinson’s changes the shopping trip from being an ordeal to a much more pleasant affair. 
• ·     Family members (and individuals with Parkinson’s) are often relieved by the diagnosis – at last an explanation for all those symptoms, and “at least it wasn’t something else”
• ·     When we discussed the benefits and problems with moving the diagnosis earlier in the disease process, there were not many good things to hear. Too many people suffer at workwith changes to their jobs, reduced hours or even face unemployment as a result of the diagnosis. Others struggle to come to terms with the diagnosis for some time and suffer psychologically, which could be worse if there were fewer symptoms to make it ‘real’.
• ·     However, many saw a positive aspect to learning the diagnosis earlier. This would offer an opportunity start engaging with exercise which has been shown robustly in research and very definitely in the community last night to have a profoundly positive impact on mood, thinking, movement and quality of life. It would also help people make appropriate life decisions, especially regarding work, pension, travel: living the life you want to live regardless of the Parkinson’s.
• ·     When I asked similar questions but in the context of available treatments that change the course of the condition, the group was unanimous: tell us as early as possible!

We left the meeting on a really positive note. There is much excitement in the academic community about how close we are to having truly disease modifying options in Parkinson’s. The road is long, and we still have much work to do: but we’re getting there. I’m delighted that the group last night shared my optimism and excitement.

I was also delighted to share with them (and you, dear reader) this link to Parkinson's TV - an English language version of the amazing Dutch videos created by Prof Bas Bloem's Parkinson'sNET in the Netherlands. Another example of real partnership between people with Parkinson's, researchers and clinicians - answering the questions you have, as well as some that you didn't know you wanted to have!

RNR