Ask the expert: a Q&A with a Parkinson's specialist
Professor K. Ray Chaudhuri is a movement disorders specialist, and the Research Director and Assistant Medical Director at King’s College Hospital in London. He's also the Director of the Parkinson’s Foundation Centre of Excellence at King’s College, London.
Here he shares more about his background and answers some of your questions about Parkinson’s.
Q. Can you tell us a little about your background and what your current role involves?
A. My father was a doctor and I remember watching him see patients with Parkinson’s in our family home in India. When I was a medical student, I was involved in an early trial of the drug apomorphine, which inspired me to specialise in neurology and movement disorders.
Today I am a clinical academic. This is a rare role these days and involves both clinical practice and research.
I run a specialist clinic for people with Parkinson’s. It offers wellness-based holistic therapies and group educational evenings for people with Parkinson’s to learn more and live better with their condition.
My research career has focussed on the non-motor symptoms of the condition. This was an area of Parkinson’s that was hardly discussed 25 years ago - and now is a key area!
Q. How can I best prepare for an appointment with my specialist?
A. I would recommend using the non-motor symptoms questionnaire. This can help you do a self-assessment and share the results with your specialist.
This will make sure your appointment is not just about movement symptoms, but can also address non-motor symptoms, such as constipation, pain, mood, anxiety, sleep problems or drooling.
Being diagnosed with Parkinson’s can be a shock, but there are lots you can do to help manage the condition. It’s important you have a treatment plan that works for you and your specific symptoms as one size does not fit all.
Q. Can you tell from a brain scan if someone is developing dementia with Lewy bodies? Would there be any value in scanning people 3-5 years after diagnosis to check there is nothing else developing?
A. Brain scans such as a DaTSCAN can only tell us about the loss of a particular type of brain cell that contains dopamine. It can’t tell us about different types of parkinsonism, including dementia with Lewy bodies.
If you’ve noticed changes in your thinking and memory, or are worried about developing symptoms, you should talk to your Parkinson’s specialist at your next appointment. It’s important to act early as there may be treatments and lifestyle-based strategies, such as brain training exercises or getting enough sleep, that can help manage your symptoms. It’s also important your medication is reviewed as some drugs can make symptoms worse.
Q. How will I know if the time is right for deep brain stimulation (DBS)?
A. DBS is a type of surgery used to treat Parkinson’s. It may be an option for when your symptoms are no longer controlled well by oral medication or advanced treatments, such as apomorphine, may not be useful or appropriate.
Every person with Parkinson’s is different. There is no set ‘time is right’ to start considering DBS.
Before making a decision about whether this treatment is right for you, you should talk to your specialist about the benefits and risks of the procedure. Together, you should also explore whether other advanced drug therapies, such apomorphine or duodopa, might help manage your symptoms. You should also talk about the treatment with your family about the risks and benefits.
DBS is not a cure and doesn’t stop Parkinson’s from progressing. But it can give people better control of motor (movement) symptoms, particularly dyskinesia. It’s important to understand what may improve after DBS and what may not - such as, falls and balance problems.
Over the years we have come to understand that the gut and the bacteria we have in our guts is crucial to our health, especially if you have Parkinson’s.
Q. Why does my brain regularly misinterpret what I’m looking at? For example, I may look at a pile of coats, but think it’s my dog laying down. Is this Parkinson’s-related?
A. This is what we call a visual hallucination. Often these images may be a side effect of Parkinson’s medication. They can happen with any Parkinson’s medication, but are more common with dopamine agonists, anticholinergics, MAO-B inhibitors or amantadine. Hallucinations are more common among older people.
In some cases they may be a symptom of your Parkinson’s, or another condition, such as dementia.
If you’re experiencing hallucinations or delusions, you should see your specialist or Parkinson’s nurse as soon as you can. They can adjust your medication, or advise you on how to manage these symptoms and the distress they often cause. They can also look for other reasons you’re experiencing this symptom, such as a urine or chest infection, or if you’re very dehydrated.
Q. What role does the gut play in Parkinson’s?
A. Over the years we have come to understand that the gut and the bacteria we have in our guts is crucial to our health, especially if you have Parkinson’s.
Abnormal bacteria in your gut is now thought to make Parkinson’s symptoms worse. Some researchers believe this bacteria is what causes people to develop Parkinson’s in the first place.
There are things you can do to manage your gut health, such as:
- Including a probiotic in your diet. Probiotics are live bacteria and yeasts, which are usually added to yoghurts or taken as a food supplement. They can help digestion and promote the healthy bacteria in your gut.
- If you find your levodopa medication is not effective within half an hour of taking it, your specialist might suggest a specific test, which can see if a common type of bacteria (Helicobacter Pylori) is causing problems with digestion.
- Regular bowel movements are important. If you’re worried about constipation, you should speak to your GP, specialist or Parkinson’s nurse.
Biomarker research has taken place extensively in the last 30 years. It’s clear that a single biomarker can’t diagnose or predict Parkinson’s as it’s not a single ‘disease’. Rather it’s a condition that has many forms and many expressions.
Q. There’s been a lot of news around biomarkers recently. What are biomarkers and how might they help diagnosis and treatments in the future?
A. Brain scans such as MRI or PET scans are helpful and continually improving. But at the moment, they aren’t good enough to see what’s happening in brain cells to definitively diagnose or monitor someone’s Parkinson’s symptoms. We also can’t take samples of brain cells to analyse as we can with other organs in the body.
So scientists have turned their attention to looking to see whether it’s possible to detect and measure changes in the body outside of the brain, to give us useful information about Parkinson’s.
Biomarkers are strategies that may help diagnose, predict the development, and monitor the progression of Parkinson’s or tell us how a treatment is working for someone with the condition.
Biomarker research has taken place extensively in the last 30 years. It’s clear that a single biomarker can’t diagnose or predict Parkinson’s as it’s not a single ‘disease’. Rather it’s a condition that has many forms and many expressions.
Detecting the 'bad' form of the protein alpha-synuclein that causes problems in Parkinson’s could act as a biomarker. There is work to find accurate ways of detecting and measuring this protein by looking at blood tests as well as using a lumbar puncture to measure levels in the spinal fluid.
A new development even suggests that taking stool samples and looking at the bacteria could lead to new biomarkers for the condition. This is because some people with Parkinson’s are thought to have specific changes in their gut microbiome compared to those without the condition.
Q. What advice would you give to someone who is newly diagnosed with Parkinson’s?
A. Being diagnosed with Parkinson’s can be a shock, but there are lots you can do to help manage the condition. It’s important you have a treatment plan that works for you and your specific symptoms as one size does not fit all.
Drug therapy is important, but lifestyle-based therapies are just as important. Research has shown that regular, moderate to vigorous physical activity can help relieve some of the motor symptoms of Parkinson’s, as well as improving overall mental and physical wellbeing. You should be aiming for 30 minutes a day (150 minutes a week).
Drinking plenty of water (1.5 - 2 litres a day), getting eight hours of sleep at night, ensuring good bone health (especially if you’re over the age of 50) and looking after your oral health are all important.
Access to a Parkinson’s nurse, physiotherapy and speech and language therapy is also beneficial as this can help you live better with the condition.
There are also lots of resources out there where people can learn more about the condition in different ways. For example, in the 'Movers and Shakers' BBC podcast, six friends, including Sir Nicholas Mostyn, Jeremy Paxman and Paul Mayhew-Archer, discuss the realities of life with Parkinson's, and focus on different aspects of the condition in each episode.