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“A realidade dos episódios OFF é que são muito desagradáveis”, afirma Gary Boyle, membro da direção da Parkinson’s Europe, a quem foi diagnosticada a doença de Parkinson em 2011.
Um episódio OFF é o que acontece quando a medicação para a doença de Parkinson começa a perder efeito.
“É um fenómeno motor e não motor e, como tal, qualquer que seja o seu perfil, , pode haver um agravamento desses sintomas”, explica Brian Magennis, Enfermeiro Especialista no Mater Hospital em Dublin e membro da direção da Parkinson’s Europe. “Nos episódios OFF, podem ocorrer sintomas não motores, como dormência, formigueiro, uma sensação estranha na barriga, agitação, irritabilidade, nervos, picadelas, vários sintomas estranhos e maravilhosos. E depois, quando a dose seguinte começa a fazer efeito, desaparecem.”
De um modo geral, os episódios OFF começam a surgir quando a pessoa tem Parkinson há cerca de dez anos. Em alguns casos, podem ocorrer 4 a 6 anos após o diagnóstico. Cada pessoa com Parkinson tem uma experiência diferente da doença e, do mesmo modo, as características dos episódios OFF também variam.
Gary explica como são os seus episódios OFF. “Começo a ter tremores na mão e no braço. Fico muito lento. Não consigo escrever. Tenho dificuldade em utilizar o telefone. Sinto-me em baixo, nervoso. Começo a pensar: quando é que vou voltar a estar ON? Estar OFF tem impacto em quase tudo.”
Embora as expressões ON e OFF sugiram um declínio acentuado, o OFF apresenta-se mais como uma deterioração gradual.
Fatores como o ambiente e o estilo de vida (dieta, nutrição, exercício e sono) e a hora do dia, podem ter impacto na manifestação do OFF de uma pessoa. Os episódios OFF podem ainda ocorrer tanto de dia como de noite. E podem acontecer de repente, sem motivo aparente.
“Os episódios OFF repentinos são bastante raros, mas, quando acontecem, são bastante debilitantes”, refere Gary. “Nunca estive OFF mais do que quatro horas, no pior dos casos, mas isso acontece quase de seis em seis meses e acontece quando menos se espera.”
“Se, de repente, ao longo de alguns dias ou semanas, estamos a ter mais episódios OFF do que o normal, é provável que exista um motivo”, explica Brian. Esta situação é habitualmente um contratempo temporário e pode não significar que a doença de Parkinson esteja a progredir. Contudo, é importante consultar um profissional de saúde que possa ajudar a identificar a causa.
Na maioria dos casos, um aumento súbito dos episódios OFF deve-se a uma de 10 razões, de acordo com Brian:
Doença (por exemplo, uma infeção urinária ou respiratória ou gripe) ou recuperação de uma cirurgia. São situações que colocam pressão no organismo, o que pode provocar um agravamento temporário dos sintomas.
Sofre de dor crônica ou aguda.
Desidratação. Pode reduzir o volume sanguíneo e afetar a absorção dos medicamentos.
Obstipação. Pode afetar a absorção da medicação para a doença de Parkinson e torná-la menos eficaz.
Não toma os medicamentos à hora certa ou o regime de medicação mudou.
Está a tomar um medicamento para um problema de saúde não relacionado com a doença de Parkinson que é contraindicado porque reduz a eficácia da medicação para esta doença.
Está a atravessar um período de stress.
Sono não reparador. Um período prolongado de sono insuficiente pode afetar temporariamente a função motora.
Ansiedade ou ataques de pânico. Pode acentuar os sintomas motores. A ansiedade é também um sintoma frequente de que a dose de Levodopa está a começar a perder efeito.
Depressão. Pode causar um agravamento súbito dos sintomas motores e não motores.
“A obstipação é um dos principais problemas, na medida em que bloqueia a absorção de Levodopa”, explica Brian. “Se estivermos doentes com uma infeção ou no seguimento de uma intervenção cirúrgica, podemos estar mais OFF, porque pode ter sido necessário tomar alguns medicamentos contraindicados ou foram realizadas alterações não planeadas na medicação habitual. O stress é um fator importante que pode mesmo despoletar um episódio OFF.”
“Depois de identificar a causa, tratar a causa e dar algum tempo, tudo volta ao ponto em que estava. A menos que seja uma questão relacionada com medicamentos”, diz.
Brian aconselha as pessoas com a doença de Parkinson a escreverem um diário dos seus episódios OFF, registando o tempo que os medicamentos demoram a fazer efeito e quanto tempo duram, para depois mostrar ao profissional de saúde. As pessoas com esta doença devem evitar situações em que, por exemplo, passem um total de oito horas por dia em estado OFF.
Por fim, Brian aconselha as pessoas com a doença de Parkinson a trabalharem com o padrão dos seus episódios OFF.
“Algumas pessoas funcionam muito bem de manhã e, à medida que o dia avança, vão-se desgastando e ficam mais OFF e discinéticas à noite. Outras pessoas sentem-se muito mal de manhã e, à medida que o dia avança e à noite, ficam muito melhores. Se conseguir identificar um padrão, adapte o seu dia e o seu estilo de vida nesse sentido.”
Segundo Brian, se os episódios OFF se tornarem problemáticos: “Consulte o seu profissional de saúde para gerir melhor a situaçâo.”.
A Parkinson’s Europe partilha este artigo apenas para fins informativos; não representa a opinião da Parkinson’s Europe e não constitui uma aprovação pela Parkinson’s Europe de quaisquer tratamentos, terapias ou produtos específicos.
We all know the benefits of daily exercise. Being active has such a positive impact on physical and mental health, often making you feel great both inside and out. People with Parkinson’s are around a third less active than other people of the same age. But the more active you are, the easier you will find it to manage your symptoms.
Whatever your fitness level, you can find the exercise that works best for you – whether that is a long countryside walk with friends or simple chair-based workouts at home. Making exercise part of your regular routine will lift your mood and help you keep your body moving more effectively.
Speaking to your physio or doctor for advice before starting any new exercise regime is worthwhile. They will be able to suggest the best kind of physical activity to start with.
Physiotherapist (and President of Parkinson’s Europe) Josefa Domingos – who has spent decades specialising in physiotherapy for Parkinson’s – has approved the following advice.
Tips on how to keep active and exercise effectively and safely with Parkinson’s
Reduce the amount of time you sit each day. For example by walking rather than driving short distances, getting off the bus one stop early or making a walk part of your daily routine. Where possible, take the stairs rather than a lift or escalator. It really does make a difference.
Try to exercise for at least 150 minutes each week. During each session you should aim to get warm, sweat lightly and be out of breath to the point that it is hard to keep up a conversation. How you make up the total time is up to you. However, it is better to exercise two or three times a week for shorter periods than just a long session at weekends. You could try five sessions of 30 minutes. If that is too long at once, then repetitions of two 15-minute periods or three bursts of 10 minutes each is also fine.
Make sure you include different styles of exercise. Aim for a range that will extend your endurance, build and maintain muscle strength, and maintain joint flexibility and your ability to stretch.
Improve your functional mobility. For example, try making large amplitude ranging movements with your arms and legs when you are sitting, lying down, standing or walking. These will help with daily activities such as walking and balance.
Enjoy. Exercise should be fun! So pick something you enjoy and which suits your daily life, physical capabilities and movement goals you want to achieve. You are far more likely to maintain your regime if you enjoy what you are doing, feel able to cope and help you improve!
Use the buddy system. An exercise ‘buddy’ or group sessions are great for moral support and motivation. Consider joining organised or group classes at your local gym or other public venues, particularly if they are Parkinson’s specific or provide recognised benefits for people with Parkinson’s such as dance,Tai Chi, pilates, boxing and others.
Choose your time. Try to exercise when medication is working well and you are feeling rested as movement will then be easier for you.
Know when to stop. It is normal to feel tired when exercising and a little after. The fatigue related to exercising should not last the rest of the day. During exercise remember to stop if anything hurts or feels uncomfortable. You should talk to your doctor if you experience any of the following when exercising:
pain
nausea
light-headedness
dizziness
a tight chest for more than a few minutes
or if you feel your heart missing or adding beats.
Listen to your body and learn to recognise when to stop.
Consult your doctor. If you have recently had a heart attack, have any other heart problems or have been told that you are at risk of heart disease then you should consult with your doctor before you embark on an exercise programme. You should also talk with your doctor before exercising if you have been inactive for a long time.
“It’s been a quiet miracle” Janette Sinclair on her DBS experience
Parkinson's Europe Board member Janette Sinclair tells us about her recent personal experience of Deep Brain Stimulation, which she underwent in January,2025.
Janette Sinclair is a UK national living in Brussels Belgium with her husband and son. She is a member of the Parkinson’s Europe Board. Here, she tells us about her recent personal experience of DBS (Deep Brain Stimulation surgery), which she underwent in January 2025.
“I was diagnosed with Parkinson’s in 2013, aged 50. For the first nine years, I managed quite well with a lot of exercise, and medications like Requip (ropinerol) and Azilect. I was not keen on levodopa, as it gave me highs and I found it unreliable. But then things started to get more complicated. I was no longer able to get the same results with agonists alone. I reluctantly started taking levodopa in the form of Stalevo and quickly ramped up to five times a day while still taking quite a large dose of Requip. I was also taking other medication like soluble and slow-release prolopa and Xadago.
I was having more and more difficulties with the unpredictability of the medication. In the end, I never knew when I was going to go off and this eroded my confidence to the point where I would not even feel comfortable walking five minutes to our local shops. I had always been very independent in the past and this was not only a physical challenge for me, but also a huge psychological battle. I think people looked at me and thought that I was in quite good shape but I just could not cope with the swings, four or five times every day, between ‘ons’ and ‘offs’, and the nights mostly ‘off’.
I really felt I had nowhere to go, and had even started thinking about assisted dying (which is legal in Belgium).
This was compounded by my work situation. I had managed to keep working at a relatively senior level, but the last year defeated me and I was off on sick leave for a year until I retired last November.
Making the decision to begin my DBS experience
“I was ‘in between’ neurologists due to departures at my local hospital and I therefore took advice from a British neurologist at King’s Hospital London. In fact I had seen him when I was first diagnosed with Parkinson’s and he had mentioned DBS as a solution, I even met the surgeon. But when I started looking into the practicalities, several years later, it was clear that it would be very complicated to have the operation in the UK while living in Belgium. So at the beginning of 2024, I started investigating DBS possibilities in Brussels and surroundings.
I was looking for an multidisciplinary team with lots of DBS experience, not so obvious in a small country like Belgium; and I wanted to have the operation done while asleep. I was terrified of the idea of being awake during part or all of the operation and I was already imagining every conceivable disaster scenario.
There was a sense of urgency around my search because there is a window of opportunity for DBS; it needs to be done while the body is still in reasonable shape, as posture changes cannot easily be reversed. I worried that chronic problems with my lower back and my neck would decline before I had the operation and cause problems.
The university hospital has a large Neurology department and specialises amongst other things in Parkinson’s with a DBS unit and a Parkinson’s nurse. We met the surgeon several times. He answered all my questions seriously and explained the risks, and I had a good feeling about him.
Up to then, I had been in exploration mode, but decision-time for me came in June 2024 when we were discussing the details of the operation – he said that he usually had the patient awake during at least part of the operation. I asked, “Could you do it with me asleep throughout?” He said that he could, citing some references that showed the benefits of awake versus asleep procedures, mentioning that he did similar operations asleep for other pathologies and referring to the fact that the robotics he used helped with the accuracy of the electrodes placement (the main reason for keeping the patient awake).
So I surprised everyone by signing up there and then. Once I had made up my mind, I asked for the earliest date possible, which turned out to be the beginning of January.
My experience begins: DBS assessments
“We discussed risks, the main ones being infection and bleeding on the brain. The hospital had a low incidence of both, however, when these occur they can be catastrophic. Each of us reacts differently to risk and each one will make his or her own decision. I tried to put things in perspective because the DBS procedure has been around for several decades now, and nowadays is a fairly routine and safe procedure.
Not everyone is suited for the operation, so there were some important and rigorous tests to go through before I could have the operation. The most important test is the levodopa challenge. Basically, a good response to levodopa is a good indicator for DBS success, so the doctors want to see how you react off levodopa, and then how good your response is when the medication is reintroduced. The test requires overnight hospitalisation in case there are difficulties or a bad reaction, and all I can say is that I was very grateful to my neurologist when he let me take my last dose of medication at 8pm – so the night was bearable – before stopping all of my medication.
The next morning, at around 10am, I was filmed while in an ‘off’ state – it was horrible, especially the mental shutdown. The neurology team checked the video – it was enough! – and I was allowed my medication. Once the meds kicked in, I was filmed again to show me doing the same exercises while fully ‘on’. I was told that, as a rule of thumb, at best the DBS might match my ‘on’ results, but was unlikely to be better. This was a good way for us to understand what I might achieve through the DBS experience, to manage expectations. I was happy, though, as I usually had very good results when my meds were working, they just didn’t work for long enough.
The other extremely important test is a Neuropsychiatric evaluation. Essentially, this is a whole barrage of cognitive tests aimed at assessing memory, to see if there is any risk or sign of dementia. The tests took around three hours. There was a questionnaire to assess emotional status. The cognitive tests were very varied and quite intense: naming images, remembering and repeating long lists of words, copying shapes and patterns. I personally really enjoyed it, but it was very tiring and I can imagine it could easily be very stressful for some people.
Pre-op nerves
“My operation date had been reserved and was now confirmed for 6 January – Epiphany, which seemed auspicious. I thought I felt fine about it, but with hindsight I was letting my anxiety get away from me, and I got really wound up about an administrative issue, regarding direct billing of costs of the operation to my health insurance. It was a low point for me, focusing intensely on one issue, writing long emails, avoiding the phone, spiralling (typical Parkinson’s?!)
Luckily everyone was very patient with me, and the issue was resolved quickly and positively.
Then suddenly it was Christmas and I started to have doubts. I felt that I did not know enough of what I was letting myself in for, not helped by my husband Carl who took the view that I had nothing to lose and plenty to gain, and according to him that was all I needed to know. I tried to find more specific practical information about the operation and what happens afterwards.
The hospital had quite a long and detailed guide to the DBS experience, but it was in Dutch and for (unknown) technical reasons we could not get it translated. But other reputable guides were available and they were all much of a muchness, with technical descriptions of process, how the device would work etc, but nothing really about what it would feel like, how long it would take for the wounds to heal, what the physio/exercise regime was like etc.
Was there someone I could talk to? I realised that I only knew a few people who had experienced the operation. They were happy to give me answers about their own DBS experience if I could just work out what questions to ask!
Just before my operation date, we spent the evening with friends. After about half an hour I went off my meds, and spent nearly two hours lying on the floor while waiting for the next dose to kick in. By the time I was feeling okay, it was already gone 11pm. Too late to enjoy the food, but we sat chatting. And then my meds went off again! I knew that if we did not leave immediately I would not manage the 10-minute walk home before the rigidity and slowness set in.
The couple we were visiting had experience of Parkinson’s and they were very sympathetic to my difficulties, but other people can be less understanding and even when people make the effort, I know that my own reaction is not neutral. I may have Parkinson’s but I still wanted to keep my dignity when the Parkinson’s was showing; I worried about being vulnerable in ‘unsafe’ places (which by now had become anywhere other than inside my own home); I hated looking ‘weird’ and drawing stares.
January loomed, cold and dark. I was scheduled to report to Leuven hospital on 4 January, but there were practical points that I still wanted to confirm before the surgery – which make of device I would have implanted, whether to have left or right-side placement of the neurostimulator, whether to choose a rechargeable device or not. Another long letter later, and once more I was reassured, this time with a detailed reply from the surgeon himself, addressing each point and proposing to pass by on the Sunday evening before the operation.
Just before the operation was due, we realised we had not signed a Power of Attorney allowing Carl to manage my health insurance affairs in the event that I was incapacitated. There were probably other things we should have done…
Janette and Carl at Christmas
My DBS surgery experience
“I checked into the hospital and settled into my room. When we arrived we were informed of a pilot project allowing a nominated person to stay for longer hours, beyond the regular visiting hours. We jumped at this opportunity, given my concerns about stopping my medication: from Sunday morning, no more Parkinson’s meds were allowed. I handed in the large pack of drugs I would usually take over 2-3 days, to avoid any temptations I might have to ease the ‘off’ time. As I got more and more ‘off’, I resorted to movement for relief, stretching out my back as much as possible.
Carl and I decided to do laps around the ward corridors, going slower and slower as the evening progressed. The surgeon came by at around 9pm and went through the basics of the operation. It was really good to see him, though I’m not sure how much I took in. Not for the first time, it flashed through my mind that I ought to record such conversations so I could listen to them later.
Carl was about to go home, planning to come back early in the morning. I was anticipating a difficult night, and on a whim, I asked if he could stay. The staff looked dubious and went off to investigate. To my surprise, the response was positive, and they made up a sofa bed straight away. I didn’t get much sleep throughout the night – my legs were spasming and twitchy – but at least I was not alone.
Next morning, it was dark and snowing outside. I got washed and was helped into a hospital gown. At around 7am we headed down to the operating theatre. Carl was allowed to come with me part of the way. He was evidently taking things very seriously, as his usual jokey patter had vanished.
Then I was on my own. UZ Leuven is a very large hospital and I realised that there were dozens of people on hospital beds being brought down to a central dispatching hub. Someone came and checked my name and asked which operation I was going to have (was there a choice?!), then I was off again to the end of the corridor. Once there, a series of medical staff came up to me and introduced themselves, promising to look after me during the operation. Then came the surgeon, and he wished me good luck!
Everyone was very busy getting organised, and then came the anaesthetist, who told me to countdown from ten: ’10, 9, 8…’
The next thing I knew, people were calling my name and trying to wake me. I was resisting, enjoying such a good sleep, but in the end I gave into the inevitable and opened my eyes. It was evening already. Apparently people with Parkinson’s take longer to come round after a general anaesthetic. My operation had finished early, by 1.30pm, but I did not come round till much later. Carl had gone home but was now back, having panicked when the surgeon rang early to tell him the operation was done.
My head was a mass of black stitches and congealed blood with dressings stuck on top. There were more things going on there than I had expected, for example the cable and connection behind my ear running down to the device. It had to go somewhere I suppose… But my hair was mostly intact and there was very little pain – just a slight headache, which soon passed.
The neurostimulator was not yet turned on, and I was disappointed to be put back on my pre-op levels of medication, even though I had expected this. I was not as dependent on them as before, however, due to the strange effect of brain swelling after the operation.
Post-surgery recovery and DBS device switch-on
“And two days later I was on my way home to heal. A largely uneventful few weeks followed, except for the joys of trying to remove a very sticky and tenacious substance from my hair while being mindful of the head wounds. The challenge was beyond me and I ended up cutting out the worst tangles from my hair.
Apparently the substance was silicone, placed onto the stitches to keep them clean, but impossible to remove with shampoo. I also had a little scare when the wound behind my ear looked a bit red and infected. I called the DBS Secrétariat, sent photos, and spoke directly with the surgeon, who immediately asked me to come in for a check-up straight away, which I was happy to do. We were both relieved when he gave the ‘all clear’.
In the period from 8 January to 9 February I generally felt well, though tired, and I looked well and was able to do some exercise. I was still taking my full meds but did not feel the same desperate reliance on them that I felt before the operation, although the effect had finally worn off by the beginning of February.
On Sunday 9 February, it was back to Leuven, checking into the Neurology ward again. Carl took advantage of the extended visiting hours again but could not stay overnight as this time I was sharing a room with another DBS patient. He hung around as long as he could before heading home, leaving me to face a difficult night – yet again, I had to stop taking all my meds, this time so that an ‘OFF’ baseline could be established before setting the device.
First thing the next morning the DBS expert, Dr Swinnen, arrived and took me off for baseline testing of my neurostimulator device.
He began by running through various programmes to establish some guide measurements. I reacted quite strongly to the higher levels each time – I felt that the skin around my eyes was tingling and pulling tight, which was very unpleasant. Once this was done we fixed the setting quite low, and I was prescribed 8mg of Requip and 2 prolopa 250 tablets.
There was no “Eureka!” moment for me: the device just took the place of the drugs I had been taking, only it worked all the time, with no dosage fails or nighttime panics. A quiet miracle.
The aim when regulating the device is to find the best mix between the device settings and the medication, as measured by the levels of dyskinesia and ‘off’ states. For the next two days the device was gradually adjusted, and my reactions were closely monitored. Then, my levodopa dosage was reduced to 1 tablet per day.
Over the next four months, I have had regular appointments with the team to regulate the neurostimulator device – twice weekly the first two times, then weekly, and then with a gap of a fortnight and a month to accommodate my holidays. At each visit, a detailed record of my everyday symptoms and reactions were taken and discussed, and we then agreed what action to take – most often, we would increase the settings of the device by a few points, as I was more susceptible to ‘off’ symptoms than dyskinesia.
We, or rather, Carl did the adjustments, each time we had clear parameters for the changes. We went to Wales to visit my mother. She was so pleased to see the changes in my condition.
I did not manage to sustain my fitness levels after the operation and so I organised a 4-week physical rehab programme at a specialist centre in Portugal, called Centro Neurologico Senior, in Torres Vedras.
A pile of Janette’s now-redundant Parkinson’s medication!
Four months on: reflections from my DBS experience
“It’s important to emphasise that four months on from the operation, my body is still gently healing, and I am still going through the initial phase of adjustment of the neurostimulator.
But let me just say that I’m really happy the way things are going. I didn’t have a dramatic moment when the neurostimulator was first turned on – I’m told that is more likely to happen for tremor-dominant patients, whereas I had more rigidity.
For me, it’s been more of a quiet miracle – my DBS device works 24/7, and without the drugs.
In fact, l have reduced the levodopa I was taking by around 80%, the agonist Requip by nearly half, and I have stopped just about everything else.
The downsides of my DBS experience
“There are a few things on the negative side, but so far they seem to be manageable :
The extension wires in my neck connecting the neurostimulator to the brain are a bit tight – I’m doing physio as advised, and will see the surgeon later if there is no improvement.
I’ve put on weight – around 10 kilos. This seems to be a fairly common response following DBS.
The charging pack is heavy and not very user-friendly.
There were also a few things missing from my DBS experience which, on reflection, would have been helpful:
Written guidance on scalp wound care, covering:
The location of wounds
Stitches care and removal
How soon I can wash and/or dye my hair
Any special products I could use, for instance to remove the silicon from my hair
Scar treatment
How long sensitivity / pain/ numbness would last
Advice on regular/ routine tests to get out of way before the operation, for instance a mammogram
Advice on weight gain – if I’d been more aware, would have made an effort to stem the excess eating
More information on the sheer physicality of neurotransmitter – not comfortable for me. A problem affecting women more than men?
User-friendly guidance on things to avoid for battery safety, such as saunas, sunbathing, swimming, and different types of medical scans and imagery
Despite the substantial progress so far, I believe that my DBS adventure will be continuing for a long time yet, and I’m looking forward to the new lease of life it has given me.
What does my DBS experience mean in practice?
“I’m gradually regaining my confidence to go out by myself, and this means I am regaining my independence – I started by walking to the local shops 10 minutes away, and then staying out for longer each time. Recently, I went alone to a World Parkinson’s Day event – a journey of around 30 minutes on public transport and a 10-minute walk at each end – and finished the day with dinner with friends.
This is nothing and everything: most of you do this every day, but those of you familiar with more advanced Parkinson’s will know what I’m talking about.
I can go to bed without fear.
I can use chopsticks again.
And my husband said he got me back.”
Note: Janette was treated at UZ Leuven under the care of neurologist Professor Dr Wim Vandenberghe, neurosurgeon Professor Dr Philippe De Vloo, and Dr Bart Swinnen, a neurologist specialising in DBS.
Discover more DBS experience stories in our Demystifying DBS campaign, including Ivan’s DBS experience in Ireland in our in-depth article, and Gerlach Roomans’ DBS experience in the Netherlands in our DBS podcast.
Meet Parkinson’s Europe’s new Data and Innovation Steering Group
Revealing the social impact of Parkinson's in Europe, making research more accessible and exploring innovations that help make Parkinson’s less of a challenge – just some of the ambitions held by our new steering group
People with Parkinson’s and European experts from a range of fields including research, IT, physiotherapy and data science are coming together to form Parkinson’s Europe’s new Data and Innovation Steering Group.
The Data and Innovation Steering Group has been established to guide and support Parkinson’s Europe’s new strategy, focusing on the first of its three strategic pillars.
Members will use their personal and professional insights to agree on activities that meet the needs of all relevant audiences, in line with the Data and Innovation pillar.
The group held its first bimonthly meeting this month, co-ordinated by Parkinson’s Europe’s Advocacy and Campaigns Manager Hildur Kristjana Önnudóttir, Outreach and Engagement Manager Jessie Duncan and Strategic Director Amelia Hursey. The first stage will include “trying to collate as much information from already existing data sets that might be useful in helping us to understand the social impact of Parkinson’s in Europe”, according to Amelia.
She adds: “We will also be gathering knowledge about current innovations linked to Parkinson’s to make sure we have a full picture of the work happening in the area. From this work, the plan is to create a list of activities linked to the two other strategic pillars, making sure that the insights we gather strengthen our strategic direction.”
Meet Parkinson’s Europe’s new Data and Innovation Steering Group members:
Anastasia Markidi is a pharmacist and researcher with a PhD focused on Parkinson’s disease
“I have always been curious to understand the mechanisms behind this disease and contribute to finding new treatments. I want to help make research and data more useful and accessible for the Parkinson’s community.
“During my PhD, besides studying the biological mechanisms of Parkinson’s, I had the opportunity to connect with people living with the condition. Hearing about their challenges inspired me to help in improving their daily lives.”
Isabelle Wilputte has worked in the pharmaceutical industry for more than 25 years, doing project management across various departments
In the past few years she has worked as Patient Engagement & Advocacy lead, mostly in the Parkinson’s space.
“I would like to contribute to, and also learn from, this initiative aiming to create a better understanding of Parkinson’s in Europe, as there are still so many data gaps to fill.”
Jean-Alain Jachiet has held various IT roles in the media sector over the past 35 years, including positions at Warner Music, Havas and RTL Group
Following his Parkinson’s diagnosis, he founded a company focused specifically on applying Artificial Intelligence (AI) for monitoring neurodegenerative diseases.
“I believe that by collaborating with others in the group, we can relay research information about Parkinson’s disease across Europe, a condition still poorly understood by the public.”
Josefa Domingos is a specialist physiotherapist, researcher, and educator with more than 20 years of experience dedicated exclusively to Parkinson’s
“My work encompasses various areas in Parkinson’s, with a special emphasis on improving mobility, promoting exercise habits, and providing accurate information for all individuals living with Parkinson’s.
“I want to help advance research and improve care for people with Parkinson’s.”
Kieran Breen is Head of Research at St Andrew’s Healthcare, a mental health charity in the UK working to deliver specialist inpatient and community mental healthcare services
He has represented Parkinson’s Europe at the Committee for Advanced Therapies at the European Medicines Agency since 2013. Here, he gained a great insight into the processes underlying the registration of new medications.
“I have worked in medical research for over 30 years, and understand the importance of the use of clinical data to understand conditions such as Parkinson’s, especially in these days of artificial intelligence and machine learning.”
Mark Gibson is a polyglot research methodologist, and has a company that conducts patient-centred studies globally
“A lot of our work takes into account the cultural aspects of people living with Parkinson’s around the world. I am interested in being part of this group because I want to offer the learnings and experience I have gained in this area to a non-commercial activity in order to be of benefit to the association.”
Nicole Thorpe has a background in tech and innovation, and is living with young-onset Parkinson’s
“I am full of ideas and always up for reimagining how things could be. I am passionate about shaking up innovation for Parkinson’s to better reflect real life.
“Therefore I am excited to join this group to explore how data and innovation can help make Parkinson’s less of a challenge. More inclusive, and truly shaped by lived experience.”
Svetlana Gogolin lives in the UK and has more than 25 years of experience in healthcare market research, analytics, and data science
She has worked for several leading healthcare research institutions, and led a large data science and advanced analytics team. She has also been responsible for developing and supporting new methodologies in her role as Chief Research Officer.
“After being diagnosed with Parkinson’s in 2024, I am eager to contribute my professional knowledge and expertise to Parkinson’s Europe, helping people with Parkinson’s. I am driven by the hope of inspiring better healthcare and potentially achieving better patient outcomes through my work in healthcare market research and analytics.”
People with Parkinson’s and healthcare professionals can view clinical trials taking place across Europe using a new map on the Clinical Trials Information System (CTIS)’s public website.
The map is intended to increase access to clinical research in the EU. It offers patients and healthcare professionals easy access to real-time information about trials being conducted in their area.
The new launch is part of the Accelerating Clinical Trials in the European Union (ACT EU) workplan for 2025-2026. It comes in response to stakeholders’ request for a patient-friendly dashboard to help locate clinical trials in Europe.
Users can filter the map’s results by medical condition – such as Parkinson’s – as well as country, and whether the trial is recruiting. Each featured trial includes a clickable link to more information.
Parkinson’s clinicial trials
“The map currently displays information on over 50 clinical trials on Parkinson’s disease, around 20 of which are recruiting participants,” said a spokesperson for the European Medicines Agency, which launched the website.
“Search results offer investigators’ contact details, enabling members of the public to directly enquire about potential enrolment in a given trial. By ensuring public access to accurate information, the clinical trial map facilitates recruitment and accelerates the conduct of clinical trials in Europe.”
Parkinson’s Europe Strategic Director Amelia Hursey added: “The best thing about this map is that we can easily see where in the European Union research trials are happening. It means anyone can have a look at it and search for their area of interest and then click on the map pin to find out who to contact about the research.
“It’s a fantastic tool, allowing people with Parkinson’s to see how much research is happening.”
A series of new therapeutic videos have been created by Canadian artist with Parkinson’s Barbara Salsberg Mathews, using mime to help people with Parkinson’s manage their symptoms.
The Mime Over Mind series for people with Parkinson’s includes 12 videos, led by the retired teacher and former professional mime artist.
Barbara was diagnosed with Parkinson’s in 2020, having noticed issues with her posture, right arm and foot. She says using mime techniques have helped retrain her brain to create new neural pathways to help manage these symptoms.
Barbara explains: “To walk normally, I use imagery. I visualize swallowing a coat hanger to improve how I carry my shoulders. Whenever I think of that coat hanger, my shoulders immediately return to their correct position.
“To improve my posture, I imagine a puppet string at the back of my crown, holding me up and another string moving my frozen right arm forward and backward while walking. I also concentrate on feeling my right heel touch the ground when walking, to prevent my foot from dragging.”
Mime videos aim to improve Parkinson’s symptoms
Barbara decided to share her knowledge to help others with Parkinson’s, working with the University of Guelph in Canada to develop the Mime Over Mind programme. Supported by Parkinson Canada’s CARE Fund, she has created 12 videos, available on her Mime Over Mind YouTube channel.
Therapeutic mime can improve balance and gait, and increase range and fluidity of movement, she says, with the benefit of being fun, easy to learn, and requiring no special equipment.
The videos are typically between two and five minutes long, and each come with a downloadable transcript.
Adaptable exercises
“I’ve also included ways to modify the exercises to suit different stages of Parkinson’s Disease,” Barbara adds. “And ways to extend the activities, should people wish to challenge themselves or practice these lessons with others.”
She recommends viewing the videos in order, as they run from the easiest to more difficult sessions. Users should also wear comfortable clothing and shoes, and work at their own comfort level.
“It is helpful to go through the lessons with short and frequent visits,” Barbara advises. “The important thing is to be mindful and aim to do your personal best.”
The videos can be used over a 30-minute session three times a week, or shorter, more frequent sessions if preferred.
She also released a set of new illustrations for International Women’s Day. The images show the five stages of Parkinson’s featuring young women from various cultures, communities and backgrounds.
For 75 years, 9 May has marked Europe Day, a celebration of peace and unity in Europe. These are principles that strike a chord with Parkinson’s Europe – after all, our organisation was launched in 1992 to bring Europe’s Parkinson’s community together. After beginning with nine member organisations from the UK, Sweden, France, Netherlands and Germany, we now have members from over 20 countries and work with many more European organisations, united in our common goal to improve life for people with Parkinson’s.
Building a stronger Parkinson’s community in Europe reflects two of our three most important goals, as outlined in our new Parkinson’s Europe Strategy 2025-2028.
As a European organisation, we ensure that the voice of the European Parkinson’s community is heard by increasing the visibility of Parkinson’s at the European level, raising awareness of the condition and of the community’s key concerns and needs. We also help European Parkinson’s associations better support people with the condition.
In celebration of Europe Day, we asked people with Parkinson’s and Parkinson’s associations across Europe why unity and collaboration among the European Parkinson’s community is so important. Here’s what they said:
Marta Pátková, Chairwoman, Společnost Parkinson, Czech Republic, reflects on the role of Parkinson’s Europe in uniting the community
“I strongly believe that unity and collaboration are essential for improving the lives of people with Parkinson’s across Europe. Parkinson’s Europe plays a vital role in connecting us, sharing knowledge, and amplifying our collective voice.
“By working together, we can learn from each other’s successes and challenges. This helps us develop better care, support and advocacy in our own countries. A united Parkinson’s community is stronger, louder, and more effective. And together, we can achieve much more than alone.”
Ülle Krikmann, board member of the Estonian Parkinson Disease Association, discusses sharing knowledge and how a united Parkinson’s community can influence policymaking
“Parkinson’s Europe helps to improve the collective knowledge and reduces misinformation, so that people with Parkinson’s and their carers understand the disease better. People who are better educated on the nature of Parkinson’s, treatment options, and care strategies, are more involved in decision-making processes and take greater responsibility in managing their condition.
“Secondly, the collaboration of the Parkinson’s community increases awareness of the disease and ultimately can influence policymaking at the local and European level. And finally, being part of the community empowers those individuals affected by Parkinson’s by reducing stigma, increasing the sense of unity and providing emotional support.”
Laura Nīmante, a person with Young Onset Parkinson’s from Riga, Latvia, on Parkinson’s Europe’s role in fostering community, and how establishing a Parkinson’s association in Latvia is crucial
“As the saying goes: ‘If you want to go fast, go alone; if you want to go far, go together’. This also applies to the European Parkinson’s community. The experience of sharing and networking inspires people with Parkinson’s to not give up. Being able to meet – in person or online – through this organisation or to read about someone who also faces this disease every day, gives a sense of belonging, understanding and community.
“Parkinson’s Europe is the largest European organisation raising awareness and working towards a cure for Parkinson’s. I am very thankful that there is such an initiative in Europe. Parkinson’s Europe organises webinars about useful topics, shares people’s stories to inspire others with Parkinson’s and raises awareness on World Parkinson’s Day. The Parkinson’s Europe Instagram account is a wonderful example of people working together – sharing valuable information for all those with Parkinson’s.
“In Latvia, general awareness of Parkinson’s is low, and people with Parkinson’s might feel alone. We need to establish an active Parkinson’s association in Latvia – this is a very important step towards building a strong Parkinson’s community.”
Dr Jörg Karenfort, cofounder of the YUVEDO Foundation, Germany, says that together we are stronger
“We need the European Parkinson’s voices working together to achieve critical size and momentum. We also need a certain degree of competition for the best and most dynamic ideas which we can then implement together.”
Shane O’Brien, CEO, Parkinson’s Ireland, reflects on how collective action can only be beneficial for the Parkinson’s community
“We are stronger when we are unified in our advocacy work and speak with one voice, as we are a diverse community across Europe, but we have shared goals. We can learn from the work of other member organisations, including gaining insights from the successes and challenges they have encountered.
“Parkinson’s Europe plays an important role in bringing its member organisations and the wider Parkinson’s community together. It is important to have a body like Parkinson’s Europe that can advocate at European level.
“We have seen the benefits of cooperation among European organisations with the recent campaign on pesticides. Although the end result was not what we would have liked, the show of strength and speaking with one voice was an illustration of the impact that we can have collectively. We need to see much more of this on issues of concern to all of us across Europe. Including, for example, investment in research and what can be done to address medication shortages.”
Marie Fuzzati, Scientific Director, France Parkinson, focuses on the need for a continued united front against pesticides
“Parkinson’s is linked to environmental factors and could, at least in part, be preventable. Exposure to pesticides is associated with an increased risk of developing Parkinson’s. Prevention starts with reducing the widespread use of potentially toxic compounds around the world.
“Following the example of the combined efforts against the approval of glyphosate for another 10 years, the European Parkinson’s community must unite and raise its voice until safer alternatives are found and the transition to a more sustainable society can be supported.”
Paweł Kaczmarek, a person with Young Onset Parkinson’s from Poland, offers an insight into how community can defeat isolation
“Unity and collaboration are fundamental lifelines. Life with Parkinson’s often becomes an existence. This is particularly acute for the growing number of people diagnosed young, who face unique hurdles like initial misdiagnosis and the fear of stigma. Unity provides essential validation against this isolation.
“European collaboration is crucial to share diagnostic insights, combat stigma and create environments where people feel safe. Our European unity allows us to fight for the freedom to live as fully as possible. Our unity must also extend robustly to care partners and families. We don’t have to agree on everything, but facing these forces together is essential.
“Parkinson’s Europe acts as an essential central hub against isolation. It provides vital connections, reliable information, and a sense of belonging to a larger community that does understand. Crucially, it amplifies our collective voice, advocating for treatments, patient rights, increasing awareness specifically about YOPD challenges, and the societal changes needed to improve our quality of life. It facilitates the exchange of knowledge, empowering us to navigate the immense challenges. By uniting us across borders, it helps combat stigma and profound misunderstandings, giving tangible expression to the idea that “razem jest też trochę łatwiej” (“together it’s also a little easier”).”
Rune Vethe, a person with Parkinson’s and co-founder of the the co-founder of ZWAP (Zwifters Against Parkinson’s) cycling club, Norway, on the importance of both focus and collaboration
“I believe we are in need of umbrella organisations for the Parkinson’s community in Europe. We have national associations, which make sense, and we also need more specific organisations and groups too, like our cycling club ZWAP. But to bring topics to the whole community, we need umbrella organisations that connect us overall and are not limited to the ordinary borders in Europe.
“For ZWAP, we are in Norway, but we work globally. Having collaboration points in Europe are important to reach our goal of encouraging all people with Parkinson’s into the saddle to ride with us. If you have an organisation like Parkinson’s Europe, it makes the whole community easier to reach.”
The Women’s Brain Foundation (WBF) is calling for people to sign and share a new petition demanding a sex- and gender-informed approach to research, drug development and healthcare.
The petition, hoped to reach 10,000 signatures, will be presented to global leaders at the World Health Organization General Assembly (WHO GA), taking place in Switzerland between 19–27 May 2025. It is intended to drive policies that ensure diversity in science, medicine, and drug development.
The Switzerland-based international non-profit organisation works to implement sex and gender precision within medicine, focusing particularly on brain diseases.
“Our petition is extremely important as it highlights the urgency of considering sex and gender characteristics, ethnicity, social status, wealth when doing research and clinical development,” explains Dr Antonella Santuccione-Chadha, co-founder and CEO of the Women’s Brain Foundation.
“All factors which play a crucial role in disease onset, risk, progression and treatment response. Ignoring them in the era of big data and AI is not only poor science but negligence.”
Highlighting the particular relevance to healthcare for people with Parkinson’s in Europe, she adds: “In a European territory where more and more women’ experience Parkinson’s in middle life, where more and more patients from diverse ethnicities and genetic backgrounds than Caucasian are seeking medical treatment, it is time to proceed with precision medicine approaches.”
Being able to communicate is an essential part of our life. We communicate to build connections with others, to speak to our loved ones, to work or volunteer and for being social. No matter what stage of Parkinson’s you may be at, of course you want to communicate and be heard and understood. That’s where your speech and language therapist can help.
It is estimated that speech problems may affect around 90% of people with Parkinson’s. Difficulties may arise at any time, the main ones being:
Weak voice or reduced voice volume, resulting in the need to repeat oneself
Hoarse voice and limited intonation resulting in a monotonous voice
Slurred or unsteady speech
Speaking too fast or too slow
Difficulty speaking clearly whilst doing other things as speech may require more concentration than before
Stuttering or difficulties getting started
Forgetting what you were trying to say or losing your train of thought in a conversation
Difficulty following conversation when in a group.
Speech therapists can help with offering support and strategies for easier communication as well as rehabilitation and maintenance therapy. Veronica Clark, an independent speech and language therapist specialising in Parkinson’s and founder of Veronica Clark Speech Therapy Services, has approved this advice.
Here are six ways speech therapy can help people with Parkinson’s:
Early intervention
Speak to your doctor before you start to exhibit changes to your communication, as holding on to the skills you have is essential to prolong the progression of symptoms as time goes on.
However if you or your loved one are already experiencing symptoms and are concerned then it is also a good time to seek help for your speech or communication. Your doctor can refer you to a speech therapist or you can also refer yourself.
Speech Therapists can work with you to rehabilitate or maintain your skills, as well as put strategies in place to enhance your communication before Parkinson’s has any significant impact. Early intervention may even be able to prevent or delay other problems, so seek advice as soon as you can.
Volume control
A quieter, softer voice – or hypophonia – is common in people with Parkinson’s. In fact, you may not even realise you’re speaking more softly than before. Your speech and language therapist will focus on helping you maintain the correct volume level in your speaking voice. This can be done through calibration tasks and working with effort-based therapies aimed at achieving a louder voice more easily.
If the person’s voice is very low and rehabilitation is not enough, then another option is to use amplification to be heard when you need to.
Communication strategies
There are many other things to consider for effective communication, like for example non-verbal factors such as facial expressions, body language etc. Speech therapy can help to make the person more aware of these skills, and learn to use them with more intent to make their communication more effective.
Alternative means of communication can also be considered. These include communication books and technical aids such as tablets and phone apps.
Therapy programmes
Your speech and language therapist may suggest a treatment programme specifically designed for voice and speech in people with Parkinson’s.
Both Lee Silverman Voice Treatment (LSVT) and SPEAK OUT! are speech therapy programs designed to address speech and voice impairments in individuals with Parkinson’s disease.
Lee Silverman Voice Treatment (LSVT): LSVT is an intensive program comprising 16 sessions over four weeks, focusing on improving vocal loudness and speech clarity. Delivered by certified speech-language pathologists, LSVT has demonstrated significant improvements in voice and speech functions for individuals with Parkinson’s disease.
SPEAK OUT!: Developed by the Parkinson Voice Project, SPEAK OUT! is a structured therapy program that emphasises speaking with intent to enhance speech. The program typically includes 12 individual sessions, combining education, personalised therapy, and daily home practice to help patients transition speech from an automatic function to an intentional act.
Both programmes aim to empower individuals with Parkinson’s to regain and retain effective communication skills, thereby improving their quality of life.
Group therapy
Group work can be a very effective way of practising and reinforcing techniques learned in your individual therapy sessions. Not to mention it is a great opportunity to meet new people with similar symptoms and enjoy a social life.
Your local speech therapy services may be able to offer such groups but one can also access online groups around the world.
Lifestyle changes
Another way speech therapy can help with Parkinson’s is by addressing your lifestyle and environment to promote and enhance better communication. Simple changes can make a difference to your day to day.
Things like considering how noisy your environment is, reducing any distractions, and facing the person you’re talking to can all help with effective communication.
A new research centre is opening at the Aarhus University Hospital in Denmark to understand more about the causes of Parkinson’s and explore new treatments.
The Lundbeck Foundation Parkinson’s Disease Research Center (PACE) will open in September. It is funded by a DKK313m (€41.9m) 10-year research centre grant from the Lundbeck Foundation.
The centre will be run by Professor Per Borghammer, senior consultant at Department of Nuclear Medicine & PET, Aarhus University Hospital. He spoke to Parkinson’s Life about the centre’s plans.
Ambitious plans with a longterm approach
PACE will be a translational research centre, Borghammer says. Meaning, “we will be trying to do everything from studying molecules, cell models, animal models, lots of patient studies. All the way up to studying Parkinson’s disease at society level doing epidemiology and registry studies”.
Ahead of the official opening, work has already begun on recruiting the teams for the project. “We estimate that in a couple of years we would have about 70 people in this centre – group leaders, their groups, and administration, and then probably we will expand from there.”
While the goals of the new centre are considerable, and the work is hoped to continue beyond the 10-year grant, Borghammer is keen to manage any expectation of swift results. He explains, “Clinical trials is one of the main things that we will be trying to do. But that takes time to get up and running. It’ll take years to build this. But it is the goal.”
Understanding what Parkinson’s is and the causes
The centre’s core aims include gaining a deeper fundamental understanding of what Parkinson’s is and what the condition is caused by. Exploring to what extent it may be caused by the environment we live in will be key.
Plans include recruiting an epidemiologist and building a focused Parkinson’s epidemiology group.
“There are lots of questions that we can ask, mainly about risk factors. To what extent is Parkinson’s an environmental disease? Pesticides, toxicants, industrial toxins but also virus infections, inflammatory bowel disease, these sorts of things. We would like to study all of that carefully,” Borghammer says.
“The more we know about these things, the better we will be able to perhaps even prevent a lot of Parkinson’s cases from ever emerging. Because if a certain fraction of Parkinson’s is caused by toxins in the environment, if we remove those toxins we will have removed a fraction of Parkinson’s cases.”
Clinical trials and disease-modification research
The centre will have a large focus on clinical trials, especially for non-motor symptoms. “There are lots of unmet needs within non-motor symptoms in Parkinson’s,” says Borghammer. “It could be autonomic problems like constipation, urinary problems, blood pressure problems. But could also be pain, anxiety, depression and of course also cognition. We won’t be doing all of that initially, of course, but that will be our main focus area because we believe that that’s probably the largest unmet need in Parkinson’s.”
A key ambition for the centre is also to contribute to disease modification research. “Halting or slowing down the progression of Parkinson’s – in that area, we have basically two goals,” he adds.
“Number one is to become an attractive core research center so we can take part in multi-centre trials to test new drugs of immune therapies and what it might mean for disease modification. But inside the centre itself, our scientists will be trying to validate different mechanisms, different drugs that could have a potential disease-modifying effect on Parkinson’s.”
“I am passionate about access to healthcare and the rights of persons with disabilities”: Campaigns and Advocacy Manager Hildur Kristjana Önnudóttir discusses her new role
Our new Brussels-based Campaigns and Advocacy Manager, Hildur Kristjana Önnudóttir, joined Parkinson’s Europe at the beginning of March. We spoke to Hildur about the work she will be doing for the organisation, and why it is so important.
What did you do before joining Parkinson’s Europe as Campaigns and Advocacy Manager?
For the past seven years, since I graduated from my master’s in EU External Relations from the University of Kent, I have worked in advocacy for non-governmental organisations (NGOs) here in Brussels. I specialised in health policy and disability rights. This includes focusing on Article 25 of the UN Convention on the Rights of Persons with Disabilities, which addresses the right to health.
I have had roles with various perspectives, including working in health organisations representing healthcare professionals. For the past five years, I have been working from the patient’s perspective in what we call in the disability world a DPO (Disabled Person’s Organisation, which is led and run by disabled people).
Before finishing my studies I also worked in the health and social care sector. For a brief period, I was a carer of people with disabilities. I also worked as a care assistant in a care home for the elderly, which included people with Parkinson’s.
Why did you want to work for Parkinson’s Europe?
I was already familiar with Parkinson’s from my past experiences, and with my advocacy work, I knew that I had a lot of expertise to bring to the organisation. It was also a bit different from my previous work in that it was diving more specifically into health policy.
I am disabled, and so that is one of the reasons why I am passionate about access to healthcare and the rights of persons with disabilities.
Even though I don’t have Parkinson’s, I have personal experiences that most people with chronic conditions or disabilities have in common. I have experienced stigma, discrimination, inaccessibility of services and infrastructure and the discomfort people have around conditions that originate in the brain. As well as the fears when you’re going to specialists. The fear of not being believed, the fear of getting bad news, especially when you don’t know what’s going on, and the difference it can make when you have a healthcare professional that really listens to you.
What does your job as Campaigns and Advocacy Manager involve?
One of the great things about it is that it can be very varied. One day, you are at an event that might be very technical. You might be meeting MEPs or learning about new treatments, and then the next day, you are reading through legislation, doing research into potential external stakeholders that could be good partners for Parkinson’s Europe and doing some research into policy makers. There is a lot of prep work involved.
At the moment, my job is very heavily focused on data gathering and getting to know other people in the field here in Brussels, because that is the foundation of a good campaign. My goal is to maximise the external impact of the campaigns of Parkinson’s Europe.
I am bringing expertise in reaching different stakeholders to those Parkinson’s Europe has been targeting before. As well as bringing the advantage of having a representative in Belgium that is close to European institutions and stakeholders.
Is being based in Brussels crucial to the role?
Yes. The EU is not the only focus of Parkinson’s Europe, but being in Brussels can be very useful. A lot of NGOs are stationed here. It is also a very good way to get in touch with the national policy makers. You can meet people by chance and build really long-lasting connections that way.
What are your first goals for this year?
My first goal is to get to know the community. Because when I am out there in meetings, I am representing Parkinson’s Europe. I need to understand, what are the concerns of people with Parkinson’s? What are the barriers in their everyday lives? What are the difficulties they are encountering when accessing the right healthcare professionals, the right care, be it social support or health, medicine – just everything.
My role in advocacy is to amplify their voice, not to be their voice. I will also be involved in the steering groups, helping with their organisation and structure.
How does your role support Parkinson’s Europe’s new strategy?
To begin with, I will be very active in the first pillar, which relates to data and innovation. But overall, advocacy and campaigning are about making sure that the goals reach the people who are able to make those things happen.
So, part of it is about targeted awareness-raising and tailoring messages to specific audiences or actors. It is about reaching out and helping to create possible partnerships that are valuable for achieving the goals within the strategy.
What is the role of advocacy?
To echo what the Parkinson’s community is saying, that is really the role of advocacy. It is so important for the community to have a very powerful voice on the continent. It is not just beneficial for EU member states.
It’s having that strength and visibility and being part of the decision-making processes on the international stage. It is so important. And although you might not see the impact immediately with advocacy, it’s very much like planting a tree – you nurture it and nurture it and you will get the rewards.
While not everyone will experience freezing, it is a common symptom of Parkinson’s, particularly in the middle to late stages. Suddenly losing the ability to move for a few seconds or minutes can be upsetting, but the more you understand freezing, the easier it is to navigate through.
Here we talk about what freezing with Parkinson’s actually is, why it occurs and the range of treatments available to help. Physiotherapist (and President of Parkinson’s Europe) Josefa Domingos – who has spent decades specialising in physiotherapy for Parkinson’s – has approved the following advice.
Freezing can be a common symptom of Parkinson’s. It is sometimes described by people with Parkinson’s as feeling like your feet are ‘glued’ to the ground. This can last for a few seconds or minutes. When freezing occurs, your feet will feel ‘frozen’ or stuck to the ground, although the top half of your body will still be mobile.
It happens suddenly, mainly when turning, walking or taking the first step after stopping. This last one is called ‘start hesitation’, which is when you find it difficult to initiate a movement. This might happen, for example, when you try to step forward just after getting up or when you start getting out of bed. It can also occur in speech or writing.
Why do people with Parkinson’s freeze?
Not everyone with Parkinson’s will experience freezing, and some people are more prone to this symptom than others. It tends to occur more frequently as Parkinson’s progresses. It also seems to be more prevalent in those whose initial symptoms include gait problems, and less prevalent in people who initially present with tremor.
There does appear to be a link to long-term use of levodopa, although freezing can also be experienced by people who do not take the drug, so it is not simply a side effect of medication.
The exact cause of freezing is still unclear, but it is thought to occur when there is an interruption to a familiar or automatic sequence of movements.
Freezing when walking
During walking, freezing is mainly observed when:
your medication is ‘wearing off’ and no longer controlling symptoms as well
you are turning or changing direction, especially in a small space
you are walking towards doorways, chairs or around obstacles
you are distracted by another task when you are walking
you are in places that are crowded, cluttered or have highly patterned flooring
the ‘flow’ of your walking is interrupted by an object, by someone talking, or if you begin to concentrate on something else. All of these will stop you from being able to keep a rhythm going
you are in a group situation or in conversation
Is freezing related to the intake of dopaminergic medication?
Some people with Parkinson’s have ‘on’ and ‘off’ periods. This is when they switch from being able to move when their medication level is higher (on) to being unable to move without difficulty when their medication level is low (off).
Many people notice that freezing is worse when their medication level is low, when they are ‘off’. But freezing is not the same as being ‘on’ or ‘off’.
Treatment and management of freezing
There are lots of things you can do to help yourself, as well as lots of support available from experienced professionals.
Medication
The most important factor in treating freezing is establishing whether or not it responds to standard Parkinson’s medication. Freezing that occurs during ‘off’ periods, when medication is not working well, often responds well to adjustments in the timing and dosage of drugs. Always discuss any changes to medication with your doctor, or Parkinson’s nurse if you have one.
Freezing that is not related to ‘off’ periods is rare – less than 5% of cases – and doesn’t generally respond well to standard medication or adjustments to timing and dosage. In this case, for some people reducing the amount of dopamine medication you take may make freezing less likely during ‘on’ periods.
Physiotherapy or occupational therapy
A physiotherapist or occupational therapist can teach techniques to avoid freezing and recommend compensations strategies to deal with it if it happens. They will work with you, assessing your home and daily routine, to recommend any changes that might help you avoid freezing, or suggest ways to overcome it if an episode occurs. A therapist can also advise on techniques to reduce anxiety, which may trigger your freezing episodes.
They can even advise on things like the best footwear to minimise freezing and suitable walking aids – some are not recommended for people with Parkinson’s and can increase the likelihood of freezing.
Parkinson’s can affect your posture and balance. A physiotherapist can also show techniques and exercises to help with these and reduce your risk of falling forward if you freeze.
Exercise
Regular exercise is very important for people with Parkinson’s. Talk to your physiotherapist, who can suggest the best form of exercise for you. There is strong evidence to show supervised treadmill training, aqua therapy and dance can improve freezing.
Surgery
If other interventions do not help, deep brain stimulation (DBS) surgery can be effective in treating freezing episodes in some, but not all, people with Parkinson’s.
Acknowledgements: We would like to thank Dr Jorik Nonnekes (Radboud University Nijmegen Medical Centre, The Netherlands) for his help in reviewing this information; Parkinson’s UK for permission to use this source in compiling this information, and Josefa Domingos for reviewing this article.
