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LGBTQIA+ people with Parkinson’s experience higher levels of depression, new research reveals

24 June 2025 By Christy McGhee
News Diversity and Parkinson'sLGBT+ResearchUSA

LGBTQIA+ people living with Parkinson’s experience higher rates of depression and anxiety, a new study has revealed.

Respondents also reported higher levels of disability and loneliness compared to their cisgender, heterosexual peers, the ‘Parkinson’s Research With Inclusion, Diversity, And Equity (Pride)’ study found.

The findings are part of a research project carried out by Rainbows of Aging Team at The University of Nevada, Las Vegas. It explored the issues faced by LGBTQIA+ people living with Parkinson’s and their caregivers.

The research, based on surveys and interviews with healthcare providers, LGBTQ+ and non LGBTQ+ people living with Parkinson’s and their caregivers, was carried out between 2023-2025. The project aims to identify ways to promote better and more inclusive healthcare experiences for all.

LGBT+ Parkinson’s community – need for better care

A range of healthcare providers were asked about their beliefs and perceptions of LGBTQ+ patients as part of the study, from fields including neurology, physical therapy and occupational therapy. Some 42% of those surveyed reported a lack of staff training about LGBT health issues.

It also includes interviews with caregivers, who revealed stark differences between urban and rural areas in terms of LGBTQ+ acceptance, access to services and resources, and experiences of discrimination or homophobia.

Dr. Jason Flatt, who led the research, said: “This is one of the first studies to focus on members of the LGBTQ+ community living with Parkinson’s disease, along with their care partners.

“Our findings reveal that LGBTQ+ adults living with Parkinson’s disease experienced heightened challenges related to both mental and physical health, including increased rates of anxiety and disability.

“Additionally, our findings point to the need for enhanced social support, as many LGBTQ+ participants reported concerns around social isolation and loneliness.”

Parkinson’s Europe Pride campaign

The news comes after the launch of Parkinson’s Europe’s Pride campaign this June, to mark Pride Month. As well as the creation of a Pride-themed logo, the campaign included articles and a new dedicated website section to support and raise awareness of Parkinson’s LGBTQIA+ community.

Parkinson’s Europe President Josefa Domingos welcomed the study, calling for a more inclusive approach to ‘true care’.

“We know that loneliness, anxiety, and depression are common among people living with Parkinson’s. These experiences can be even more overwhelming when individuals don’t feel safe, seen, or truly included. For LGBTQIA+ individuals living with Parkinson’s, these feelings can become even more intense, often feeling invisible or isolated,” she said.

“As a Parkinson’s community, we must do better. True care goes beyond treating symptoms. It means seeing and supporting the whole person with dignity, inclusion, and compassion every step of the way.”

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“We need more support for the YOPD community”: Pawel Kaczmarek on raising awareness of early-onset Parkinson’s in Poland

The young Polish person with Parkinson's and EFNA Community Advisory Board member speaks to Parkinson's Life about his efforts to drive change
20 June 2025 By Christy McGhee
Stories EFNAPolandYoung-onset Parkinson's

Pawel Kaczmarek is someone with a big vision shaped by various perspectives – a person with young-onset Parkinson’s living in Poland, an advocate working for change, and a busy professional exploring how new technologies could change the way people with neurodegenerative conditions access the workplace.

As a new member of the European Federation of Neurological Associations’ (EFNA) Community Advisory Board (CAB), he tells Parkinson’s Life how he is bringing the Polish perspective to discussions about neurological care.

Hi Pawel! Tell us a bit about yourself

“My name is Paweł Kaczmarek, I live in Poznań, Poland, and I am 40 years old. I work mainly as a Grantsmanship Expert at the Poznań Science and Technology Park (PPNT), where I help researchers and entrepreneurs get international funding, especially from EU sources like Horizon Europe. I also work as a Trainer and Researcher, helping early-stage researchers develop strategic approaches to their careers.

“For me, work is not just a job. It is really my main form of therapy, and how I resist the effects of Young Onset Parkinson’s Disease (YOPD). Right now, my Parkinson’s has progressed, making me sensitive to stress and temperature, causing unpredictable ‘off’ periods, and creating focus and multitasking challenges. This means doing my usual tasks reliably is tough.

“So, I am currently talking with my employer, PPNT, about repositioning my role. We are hoping to create an innovative setup, using special hardware and AI-driven software tools, to allow me to continue contributing effectively. My bigger goal here is to show other businesses that highly skilled people with neurodegenerative conditions are still valuable assets.”

How has your Parkinson’s journey been so far?

“My official diagnosis came in 2020, right when the pandemic was hitting hard and hospitals were about to close down. But the journey to get that diagnosis was long and really frustrating. Looking back, I probably should have been diagnosed four or five years earlier, but my initial symptoms were mistaken for other things.

“For years, I knew something wasn’t right, but doctors couldn’t pinpoint the problem. When tests came back clear, even some people close to me started wondering if I was just imagining it. That delay definitely impacted getting started on the right treatment.

“Since the diagnosis, a lot has changed. The disease is now in an advanced stage, bringing daily physical and sometimes cognitive challenges. But it has also completely reshaped my outlook and given me a strong drive. I have jumped on new treatments early – I am currently using an infusion therapy and was actually the third person in Poland to start it. I am always looking for ways to adapt.

“Living with advanced YOPD has definitely had a big impact on my life and on my family. But it has also given me a really strong sense of purpose and resilience. Continuing my professional work is absolutely essential for me. It is my way of feeling valuable through contributing.

“I have clearly noticed that if Parkinson’s gets the upper hand temporarily and I cannot work or be active, my overall health goes downhill much faster. It really shows the power of the mind-body connection and having a purpose. Refusing to be defined by the disease and staying engaged is how I cope and fight back. This whole experience has also deeply motivated me to advocate for others.”

What is it like living as a person with Parkinson’s in Poland?

“It is a bit of a mixed bag when it comes to healthcare. Poland generally keeps up with the latest medicines. Most pharmaceuticals available globally are funded here, and getting access to treatments like DBS is not always the biggest initial problem. The difficulties often start later, with the setup, long-term management, and maintenance of these advanced therapies.

“Other critical support services are seriously lacking. Consistent, specialised physiotherapy for Parkinson’s is hard to come by. There is a real lack of holistic care. And there is virtually no assistive technology readily available to manage daily Parkinson’s symptoms.

“A major issue is the geographical lottery. Specialised centres and knowledgeable doctors are mostly in big cities. Outside the main urban areas, finding that expertise is much harder, and in some regions, the chances are practically zero.

“It also feels like neurological patients have slipped off the government’s radar, despite promises from politicians. There does not seem to be much strategic focus on neurodegenerative conditions or brain health policies. I worry about this, especially because I suspect many cases, particularly among younger people, go undiagnosed or misdiagnosed.

“When you add environmental factors like Poland’s poor air quality in winter, the potential long-term effects of COVID, and the heavy use of pesticides and herbicides during my generation’s childhood, I think this neglect could have serious consequences later.”

What is public awareness of Parkinson’s like in Poland?

“It is improving, but Parkinson’s is still mostly seen as an ‘old person’s disease’ with primarily motor symptoms, probably because Pope John Paul II was such a visible figure. We do not have a well-known younger person with Parkinson’s in the public eye here, like Michael J. Fox. So meeting someone younger with YOPD can be quite shocking to people. This leads to misunderstandings and sometimes makes it hard for younger people to have their early symptoms taken seriously.

“We have some great foundations, like Fundacja Choroby Mózgu (Brain Conditions Foundation), doing vital work. But they often struggle with limited resources and staffing, which restricts their reach and international engagement.

Paweł Kaczmarek with family

“Being diagnosed young brings its own set of challenges. It hits your career, potential family plans, social life, and finances differently. You are facing the prospect of living with a progressive disease for decades. Plus, navigating work, social settings, and even the healthcare system when you don’t fit the expected patient image can feel isolating. We definitely need more support and resources specifically for the YOPD community in Poland.”

Please tell us more about the advocacy work you have been doing for young-onset Parkinson’s in Poland.

“My advocacy really grew out of a feeling of resistance. I started simply by explaining to people in my daily life – colleagues at work, students in my PhD classes, people in local shops – why I might be moving strangely or seem ‘off’. That simple act of explaining led to contact with the Fundacja Choroby Mózgu. After that, things started to gain momentum.

“I got opportunities to share my story more widely – in newspaper articles, on YouTube, soon in weekly magazines, and even in professional journals for doctors. The response showed how much need there was for this visibility. After one online article, almost 40 families reached out, saying my story motivated them to look into newer treatment options for their loved ones.

“As an early user of the infusion therapy, I also act as an ambassador, not just by using it, but by being active in international online groups. I share my real-world experience, answer questions, and try to address the hopes and fears of others considering the treatment. My visibility has also led to connections with neuro-tech companies and scientists, opening up conversations about patient needs.”

What does your advocacy look like in the workplace?

“A big part of my advocacy now is pioneering workplace adaptation. I’m working closely with my employer to develop AI-assisted tools to help me continue working effectively, hoping this can become a model for others.

“I taught myself some basic coding to create tools for my hobbies in history and archaeology. One project, using AI analysis, led me to develop a rather bold theory about an ancient “Swamp Algorithm” – a hidden hydrological system in my region. Amazingly, just weeks later, findings published by university scientists in PNAS partially confirmed some aspects of my theory, which was a great boost and showed the potential of these unconventional approaches.

“I was recently invited to join Parkinson’s Europe’s Awareness and Visibility Steering Group, which allows me to contribute on an even broader European level. So, raising awareness for me has been about consistently sharing my story in all these different ways – showing that life, work, and even discovery are still possible despite YOPD.”

Tell us about joining the European Federation of Neurological Associations’ (EFNA) Community Advisory Board (CAB), a group of 12 patient advocates who will receive specialised training in advocacy.

“My drive to join EFNA really came from a deep need to fight back. I applied for the CAB because I often see a lack of representation from my part of Europe in these key international forums – it sometimes feels like there’s still a ‘mental iron curtain’ dividing us. And that curtain often blocks understanding on both sides. So, I wanted to bring a voice from Poland and Central Europe, share our unique challenges, and help make European patient advocacy more inclusive.

“Being part of the EFNA CAB means a great deal to me. It is a fantastic chance to connect with passionate advocates from all over Europe, gain new skills, and bring a Polish viewpoint to discussions about neurological care. It allows me to help amplify the voice of the Parkinson’s community, especially those with YOPD, and use my experiences to push for real improvements in awareness, care access, and research focus, both here in Poland and across Europe.”

What do you hope to achieve by working with EFNA?

“While the formal training is useful, the biggest benefit for me is connecting with the people. Hearing their diverse perspectives from different countries and conditions, and getting that crucial ‘bigger picture’ overview. You can’t easily get that strategic insight looking only from within one country. When you’re tackling something as complex as improving neurological care across Europe, having that overview, building awareness, finding allies, and coordinating efforts is absolutely key.

“So, my plan is really to leverage this network and strategic perspective. I bring my years of experience working with EU research funds like Horizon Europe, my knowledge of the research and innovation landscape, and policy insights. In return, EFNA gives me a platform to connect, share the specific challenges we face in Poland (like the lack of strong, internationally-focused YOPD organisations), and collaborate more effectively than I could alone.

“I plan to use this EFNA engagement to work more effectively with patient groups and policymakers here in Poland, bringing in that broader European context. I want to contribute my expertise to EFNA’s strategic thinking on research funding and patient involvement. And I’ll keep encouraging researchers locally, using insights from the European network.

“Ultimately, it’s about building stronger connections across borders to share practical solutions, like the workplace adaptation project I’m working on. And to advocate together for common goals.”

What are your plans for the future?

“My main plan is to keep working professionally for as long as I possibly can. As I’ve learned, staying active and feeling like I’m contributing is absolutely vital for my overall wellbeing and to resist the disease’s effects.

“I definitely want to deepen my advocacy work, using the skills and connections from EFNA and Parkinson’s Europe to be more impactful. A major focus will be getting the AI-assisted workplace adaptation project at PPNT successfully implemented and then sharing that model widely.

“I want to keep advocating for how AI and other technologies can empower people with Parkinson’s and other disabilities. And I’ll continue my citizen science projects too – it’s another way to demonstrate capability.

“My biggest hope for collaboration is that we can build much stronger, more active links between the Polish Parkinson’s community and others across Europe. We need to share our experiences navigating different healthcare systems, advocate for better research funding and equal access to treatments, exchange ideas, and speak with a unified voice to influence European health policy. Sharing concrete examples, like the workplace project I mentioned, could be really useful.

“Organisations like EFNA and Parkinson’s Europe are essential hubs for this, and I truly hope we can build vibrant networks to offer mutual support, and take coordinated action to make life better for everyone affected by Parkinson’s, no matter their age or where they live.”

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“All we need is some hope”: Cure Parkinson’s launches walking challenge campaign

13 June 2025 By Christy McGhee
News Cure ParkinsonsfundraisingUK

Cure Parkinson’s is calling for fundraisers to embark on walking challenges to raise money and awareness for Parkinson’s. It comes as the research charity marks its 20th anniversary.

The bid follows in the footsteps of the charity’s co-founder, the late Tom Isaacs. The campaigner undertook a year-long walk around the 4,500 mile coastline of Britain in 2002.

The charity was set up in 2005 by four people living with Parkinson’s who wanted to see a Parkinson’s cure taken more seriously. It has since funded millions of pounds of research, including directly funding 13 clinical research trials.

Cure Parkinson’s Chief Executive Office Helen Matthews says: “This year we are encouraging our supporters to get involved with Cure Parkinson’s by walking, celebrating our late co-founder Tom Isaacs’ epic walk around the coastline of Britain.

Photo credit: Philip Brown

“Our aim is to cure Parkinson’s and the only way we will do this is through the help of all our incredible supporters. We would be so thrilled if you would join us.”

Cure Parkinson’s fundraiser and person with Parkinson’s Sally Franck has raised more than £30,000 for Parkinson’s charities. Her walking challenges have included Hadrian’s Wall, Offa’s Dyke, and more recently Alfred Wainwright’s Coast to Coast.

“Walking brings so much pleasure, whatever distance you can manage. It might be just walking 100 metres up the road or taking on a long distance trail – but the challenge is there and the benefits from achievement are plenty,” she says.

“There is no cure for Parkinson’s and that makes it a life sentence not only for us, but also for all of those who live with, love and look after us. I know that what we all need is some hope; hope that a cure can be found as quickly as possible.”

Support for Cure Parkinson’s vision

Dominic Graham, Parkinson’s Europe’s Operations Director, praises the campaign. He says: “Tom Isaacs was a visionary co-founder of Cure Parkinson’s. He was also a dear friend of Parkinson’s Europe, and a highly valued Board member back in the 2000s.

“His relentless spirit and unwavering commitment to finding a cure profoundly inspired us in our own mission. We miss him greatly, and are proud to support this campaign. It so beautifully honours his pioneering legacy and continues the vital work he started. We will continue fighting alongside his vision for a world free of Parkinson’s.”

Supporters can organise their own walking fundraiser, or take part in Cure Parkinson’s organised walk in London on 28 September.

 

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Meet Parkinson’s Europe’s new Empowerment Steering Group

Meet the team who will support our work to build knowledge, connect Parkinson’s communities with each other and other stakeholders, and boost communication with healthcare professionals
10 June 2025 By Christy McGhee
Insights empowermentstrategy

A Parkinson’s nurse, physiotherapist and Deep Brain Stimulation patient are among those who have joined together to form Parkinson’s Europe’s new Empowerment Steering Group.

The second of three new steering groups has been set up to guide and support the empowerment pillar of the European charity’s new strategy.

The work aims to build knowledge, understanding and capacity of national associations and groups. It intends to connect Parkinson’s communities with both each other and other bodies such as the treatment industry. It also hopes to boost communication and understanding between people affected by Parkinson’s and healthcare professionals.

The new Steering Group held its first bimonthly meeting in May, overseen by the Outreach and Engagement Manager Jessie Duncan and the Strategic Director Amelia Hursey.

“We are very excited to see the enthusiasm, passion and skill that our members in the Empowerment Steering Group collectively have,” says Amelia. “With their help, we will make sure all of our activities that fall under our empowerment pillar will be focused, relevant and fit for purpose for our whole community.”

Meet Parkinson’s Europe’s Empowerment Steering Group members:

Ellen Causin is a French-Australian physiotherapist with experience of living and working in Australia, the UK, and France

Meet Parkinson’s Europe’s Empowerment Steering Group - Ellen Causin

“I am passionate about empowering people with Parkinson’s, as well as the health professionals who support them, through knowledge sharing. I believe this empowerment group will be a fantastic way to help achieve that goal.”

Friedhelm Chmell has many years of experience in Parkinson’s care, and now works as a Parkinson’s Nurse

Meet Parkinson’s Europe’s Empowerment Steering Group - Friedhelm Chmell

“I believe that after more than 22 years in the care and counselling of people with Parkinson’s, I can contribute to strengthening the Parkinson’s community in this way. And at the same time, I am always interested in learning from others.”

Janette Sinclair is British, and lives in Brussels, Belgium. She has had Parkinson’s since 2013 and had Deep Brain Stimulation surgery in January 2025

Meet Parkinson’s Europe’s Empowerment Steering Group - Janette Sinclair

“I am interested in bringing together and helping people with Parkinson’s to take control of their lives. From the outset after my diagnosis, I have been an advocate of intensive sports and physical activity for people with Parkinson’s.

“I have been involved in developing this at a local level through Action Parkinson, a Brussels-based activity centre for people with Parkinson’s. I am currently a board member of Action Parkinson’s and of Parkinson’s Europe.”

Jagoda Machajek works at the Brain Disease Foundation

Meet Parkinson’s Europe’s Empowerment Steering Group - Jagonda Machajek

She is responsible for communication, creating and coordinating projects, and sharing her personal experience with patients who reach out for information.

“I want to share my experience primarily from the perspective of a caregiver for my mother – the founder of The Brain Disease Foundation in Poland.”

Marco Ramelli lives in Florence, Italy, and was diagnosed with Parkinson’s 13 years ago

Meet Parkinson’s Europe’s Empowerment Steering Group - Marco Ramelli

“We must spend our time better, making sure life includes important things like diet, good habits and doing what you love to do. We need research. Research could give us new weapons, new possibilities, new lifestyles.”

Matthew May is a chemist-turned-medicines-developer and lives in Switzerland

Meet Parkinson’s Europe’s Empowerment Steering Group - Matthew May

He works for pharmaceutical company Roche but has previously worked at non-profit organisations.

“I love working at the interface of where science meets people. Since finding out as a child that my grandfather had Parkinson’s, I have wanted answers and solutions. I then worked at DIA and the European Patients Forum, and I helped set up the European Patients Academy which helped others learn about medicines development. This is something I am passionate about continuing, even if I now have another job.”

Peter DiBiaso is a Parkinson’s advocate and life sciences professional, committed to finding a cure for Parkinson’s

Meet Parkinson’s Europe’s Empowerment Steering Group - Peter DiBiaso

“I was diagnosed with early onset Parkinson’s nearly 10 years ago, and I am particularly committed to promoting awareness and participation in clinical research trials. I am most interested in the ability to build bridges across our patient advocacy communities, whilst enabling global support through continued engagement and collaboration.”

ZWAP Co-Founder Rune Vethe lives in Sandefjord, Norway, and was diagnosed with young-onset Parkinson’s 16 years ago

Meet Parkinson’s Europe’s Empowerment Steering Group - Rune Vethe

“I enjoy being part of both the local, national and international Parkinson’s community. I believe in the importance of a European umbrella organisation and would like to be involved and try to contribute.”

Lucia Power lives in Ireland and has worked in the health and social care sector for 29 years.

Lucia Power has worked in the health and social care sector for 29 years

“I have played a key leadership role in the development of disability and neuro rehabilitation services in Ireland both at service and funded level. I currently have a management role in the regulation of social care services.

“As a person with Early onset Parkinson’s, I have never let the condition define who I am, I believe in putting the ‘person’ first and that any intervention is about supporting the person and their uniqueness.”

Read more about Parkinson’s Europe’s 2025-2028 strategy

Meet the Parkinson’s Europe team

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‘We have one life, and it is up to us to make it meaningful’: Swiss pasta artist Urs Bratschi on embracing life with young-onset Parkinson’s

06 June 2025 By Christy McGhee
Stories creativityDiversity and Parkinson'sLGBT+SwitzerlandYOPD

Creating intricately detailed pieces of art from pasta may not be the skill you would expect from a software engineer with early-onset Parkinson’s. Albeit one living in a picturesque town near art-rich Basel, the culture capital of Switzerland. But to 56-year-old Urs Bratschi, it is as natural a pairing as spaghetti and tomato sauce.

“Both professions demand creativity, and I find fulfillment in balancing the structured logic of software engineering with the expressive freedom of art,” he tells Parkinson’s Life.

It has been two years since Parkinson’s Life last spoke to Urs, when he was showcasing his early pasta artworks at his first exhibition. His art has greatly evolved in that time, he tells us, using his skills to not only share the techniques with others but to also open up conversations about his Parkinson’s journey.

“I discovered joy in explaining my creative process to others—how I craft, preserve, and encase pasta in resin. Given the connection between my art and my Parkinson’s diagnosis, discussions often touch upon the disease,” he explains.

“While many are hesitant to broach the topic, I approach it openly, aiming to inform without seeking pity. I prefer my art to stand on its own merit.”

Honing his craft has seen Urs explore new methods and styles, creating even more intricate images composed of multiple pasta elements, along with bowls and plates filled with various pasta types set in resin.

Pasta art

“I have essentially pioneered a new art form,” he explains. “However, many art enthusiasts and gallery curators struggle to categorise it, necessitating efforts to raise awareness.”

These efforts are paying off, with Urs taking part in 12 art exhibitions last year, in locations from London to Luxembourg, and Germany.

Pasta and Parkinson’s: a rich and fulfilling life

Likening each of his artworks to being “like a child” to him, Urs’ passion for his creative works is evident – and inspiring. More than a hobby, it is part of his drive to show that a life with Parkinson’s can still be rich and fulfilling.

“I am active in a support group for young Parkinson’s patients, sharing my experiences and journey,” he says. “Initially, some find it hard to believe when I say that many positive aspects have emerged from my diagnosis, making my life more exciting and meaningful. But living this truth lends it credibility.”

Swiss pasta artist Urs Bratschi creates unique pieces of art

Last November, he appeared on Swiss television in a health program discussing life with Parkinson’s, and has also co-authored a book exploring art in the context of neurodegenerative diseases. “I delve into the question, ‘Why do I have Parkinson’s?’—a question I answer by the chapter’s end,” he says.

Accepting a life-changing diagnosis

This positive mindset was – understandably – not Urs’ first response to learning of his Parkinson’s diagnosis in 2014, at the age of 45.

“Upon receiving the diagnosis, my world collapsed,” he says. “I trembled uncontrollably – not due to Parkinson’s – and could not work. I often sat at my desk, overwhelmed with tears. Suicidal thoughts emerged, leading me to seek psychiatric help.”

Helping Urs climb out of that “abyss” took a team of friends and healthcare professionals who provided “immense support”, along with his belief that giving up was not an option. “A pivotal, albeit harsh, realisation was accepting that no one could cure me; Parkinson’s was here to stay.”

Once he accepted the diagnosis, he felt able to explore the condition, and even begin to consider a more positive approach. “For the first time, I seriously contemplated my life’s direction and aspirations. My perspectives shifted; some things lost importance, while others gained significance. Overcoming such a profound upheaval has been an invaluable experience, propelling me into unimaginable dimensions.

“This disease awakened me. I now internalise the belief that we have one life, and it is up to us to make it meaningful. Parkinson’s has become a driving force, motivating me to achieve. I’ve befriended my illness—it’s part of me, and I of it. I firmly believe that a positive attitude can influence the disease’s progression. Ten years post-diagnosis, I feel well and content with my life.”

An evolved worldview

As a gay man, embracing change and evolving his perspective is not totally new to Urs. “Before realizing I was gay, I knew little about it and held rather negative views,” he says. “Accepting and embracing my sexuality was challenging—I did not want to be gay. This reinforces my belief that it’s not a choice; it is inherently part of us.”

Looking back, Urs can draw parallels between the two parts of his identity, as well as key differences. As with Parkinson’s, coming to terms with his sexuality turned his “world upside down” and challenged him to adjust his perspective on life, Urs says.

However, he adds: “Unlike Parkinson’s, being gay isn’t inherently problematic—unless one lives in a society that persecutes or marginalises LGBTQ+ individuals. Nonetheless, I had to work on myself, and reshape my worldview. Both journeys expanded my horizons and opened my heart. The Parkinson’s diagnosis came about 20 years later.

Having previously navigated such a life-altering realization perhaps equipped me better to handle this disease. Often, it is the negative experiences that teach us the most. Today, I live happily as a gay man and would not change that. I also live contentedly with Parkinson’s, though I would gladly part with it if I could.”

While research suggests challenges facing people in the LGBTQ+ Parkinson’s community can include discrimination in healthcare, a lack of recorded data around gender identity and the need for best practice guidelines and inclusive support groups, Urs says he has had a positive experience to date.

“In Switzerland, LGBTQ+ individuals are largely accepted and integrated, though rural areas might be slightly less progressive. I have never felt discriminated against when seeking medical care,” he says.

“My artistic endeavours even pique the interest of neurologists. For instance, the University Hospital in Bern produced a video about me, highlighting the intersection of art and Parkinson’s.”

He also participated in an exhibition organised by the University Hospital in Zurich last year, featuring artists with Parkinson’s.

Collaboration and community

Along with cultivating a positive mindset, building good relationships is another part of Urs’ approach to living well with Parkinson’s. This includes being part of a “wonderful” support group for young people with Parkinson’s patients, and maintaining a good relationship with Parkinson Switzerland.

“Interacting with fellow ‘Parkis’ is often special,” he says. “Even without knowing each other well, there is a deep sense of understanding and empathy. I speak very openly about deeply personal things. But that didn’t come naturally. I didn’t grow up in a family where people talked openly about feelings or problems—I had to learn that myself.”

In the future, he hopes to also see improved collaboration between conventional and alternative medicine. “Often, there’s mutual misunderstanding. However, from a patient’s perspective, there’s a significant demand to integrate both approaches.”

Urs Bratschi’s pasta art for beginners:

Interested in having a go at pasta art? Urs’ impressive creations are the results of years of experience, but he has set out a simple guide below for budding pasta artists to try it out.

Pasta art by Urs Bratschi

  • Starting with stripes is the simplest. Lay alternating colored strips on an uncolored dough sheet (a tagliatelle cutter can help), then roll it out again
  • This technique allows you to craft ravioli, tortelloni, rigatoni, or penne with striped patterns.
  • To colour your dough, vegetable powders are effective. With the popularity of smoothies, powders like spinach or beetroot are more readily available and can be mixed into the flour during dough preparation

Visit Urs Bratschi’s Instagram page for more pasta art and video demonstrations.

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10 top tips for travelling with Parkinson’s

02 June 2025 Timo Montonen
Advice travel

With summer just around the corner, and the new-look Parkinson’s Passport available in multiple languages, it is a great time to plan a break. Parkinson’s Life spoke to author and campaigner Timo Montonen to hear his top tips for travelling with Parkinson’s.

Travel tips for people with Parkinson’s

“Like hundreds of other people with Parkinson’s, I planned to attend the fourth World Parkinson Congress (WPC) in Portland. But living in Finland, I was faced with a long-distance trip across the Atlantic to the US – which I decided would be better with a team of friends. Besides, it’s more fun, safer and cheaper to travel in a group.

“We travelled by planes and vans to the west coast, visiting San Francisco, Los Angeles and Las Vegas on the way to Portland. The two-week journey was a success and we discussed afterwards what we could have done to make it even better. As a result, we created the following list of advice for other groups of people with Parkinson’s who wish to travel.

Plan ahead

“Start planning well before the trip to avoid stressful situations. Decide everyone’s role in advance – in particular, who will be group leader. The schedule must be arranged according to the slowest member of the group. Keep the budget clearly in mind and follow it. Research the different ways to travel as a group. Assess the pros and cons of using different vehicles such as aeroplane, train, ship, coach and minivan.

Manage your medication

“Make sure that you have all the medication that you need for the journey – and also take enough for a few extra days in case of delays. Take care of the medication schedule. Put prescriptions, and all other documents – such as a ‘Parkinson’s Passport’ – necessary for travelling, in one folder to make them easy to find when needed.

Prepare for the airport

“If you have deep brain stimulation equipment, artificial joints or pacemakers, take all documentation with you so that you can inform staff at the airport. Internal metal plates can be detected by body scanners at security checks – be ready to explain any medical implants to security staff.

Pack light but include key tools

“Always remember to pack your essentials, but try and travel light. If you use a seat cushion, pack it in your cabin bag along with the other things that you’ll need during the flight. Eating while on the plane is easier if you bring your own spoon and non-slip mat that you can place under your plate. Take straws with you to help with drinking, and extra napkins for any accidental spillages, as the plane does not always have them. Ankle supports, a back support and a seat cushion will all help tired muscles.

Dress comfortably

“Dress comfortably in loose clothing. Wear support stockings to prevent the lower legs from swelling. Take comfortable shoes that are easy to put on and take off. Bring warm socks or slippers on the plane with you to wear when walking up and down the aisle for loo breaks.

Timo Monotonen and team
Timo Montonen and team.

Queue jump

“Inform the airport check-in staff and the plane personnel about the condition of your group – that you cannot stand for a long time in queues, for example. It’s possible that you may be able to ‘fast-track’ your way to the front of queues. If you use walking aids and/or wheelchairs contact your travel agency or flight operator in advance to ask for extra assistance at the airport.

Move mindfully on the plane

“Remember to stand up and stretch regularly while on the flight – bend the knees, stretch your legs, rotate your ankles, stretch your back, bend your upper body from side to side, raise your hands above your head. When it’s time to leave the plane remain, in your seat until the plane is almost empty – it’s no fun to stand and wait in a crowd.

Meal plan carefully

“Try to eat breakfast in your usual manner. When the group is on the road, having lunch can take a surprisingly long time, as you have to find a restaurant, order, eat and get the bill. To save time, eat a packed lunch during the day and have a sit down dinner in the evening.

Have a flexible itinerary

“Start mornings in peace. Remember to take rest breaks during the day. If the group is lacking energy, leave something out of the schedule to focus on the most important or most comfortable option. It’s OK to take a day off from the planned itinerary if the group could benefit from a rest day.

Take care of the team

“Take care of all members of the group. Make sure that all are able to cope with the schedule. Work creatively according to the situation, but don’t assume that all will follow the plan. Don’t leave anyone alone. Make sure you’re prepared if there is an emergency. Remember, worrying too much about Parkinson’s disease will not help you or your team.

Above all, enjoy the trip!”

Timo Monotonen and team at the World Parkinson Congress, September 2016
Timo Montonen and team at the World Parkinson Congress, September 2016.

This article was first published in August 2019.

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Parkinson’s Passport relaunched in multiple languages to make travel easier

02 June 2025 Christy McGhee
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Holidays are for relaxing. And Parkinson’s shouldn’t prevent you enjoying a stress-free getaway. Next time you plan a trip, whether with family or alone, consider packing the relaunched Parkinson’s Passport alongside your other travel documents, medications and treatments.

Download your free copy of the Parkinson’s Passport

The newly updated passport has been created by the Parkinson’s Europe team in collaboration with healthcare professionals, our member organisations, and our industry partners.

It provides essential medical information and helps others understand what people with Parkinson’s may need when travelling and staying away from home.

Download Parkinson’s Passport for easier travel

The Parkinson’s Passport is a free, downloadable resource that allows you to document a huge range of essential details, including:

  • General information about Parkinson’s
  • Any Parkinson’s-related issues that might make travel more challenging for you
  • Your emergency contacts, and details of devices or implants you may carry or wear
  • Your medication requirements and details of any clinical trials in which you are currently partaking
  • How Deep Brain Stimulation devices can affect airport screening and scanning services
  • And much more

It is available in English, Français (French), Italiano (Italian), Deutsch (German) with versions in Español (Spanish), Português (Portuguese), and Nederlands (Dutch) coming soon. Users can complete the passport digitally and save it on their phone, or print a paper copy to complete by hand.

“We are thrilled to launch the new version of our Parkinson’s Passport, especially in different languages,” says Parkinson’s Europe’s Director of Communications Laura Vickers-Green.

“All the translated versions contain the same information – so if you are travelling from the UK to France, for example, you can easily complete both the English and French versions to use at different stages of your journey.”

We hope the new and improved Parkinson’s Passport will help people living with Parkinson’s to feel safer and less stressed when travelling.”

Download the Parkinson’s Passport here.

Have you used the Parkinson’s Passport on your travels? If so please let the Parkinson’s Europe team know at [email protected] – we would love to know if you found it helpful!

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Wat zijn off-periodes bij de ziekte van Parkinson?

We vertellen u meer over off-periodes en wat u moet doen als ze zich ineens vaker voordoen
29 May 2025 Verity Willcocks Sponsored by Bial
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“Een off-periode is gewoon ontzettend vervelend!” zegt Gary Boyle, bestuurslid bij Parkinson’s Europe, die in 2011 de diagnose Parkinson kreeg.

Een off-periode bij de ziekte van Parkinson doet zich voor wanneer de medicatie van iemand met Parkinson uitgewerkt raakt.

“Het is zowel een motorisch als een niet-motorisch fenomeen, dus ongeacht hun motorisch profiel en hun niet-motorisch profiel kunnen deze symptomen verergeren,” vertelt Brian Magennis, verpleegkundig specialist in het Mater Hospital in Dublin en bestuurslid bij Parkinson’s Europe. “Als hun medicatie uitgewerkt raakt, kunnen ze ook non-motorische symptomen krijgen, zoals gevoelloosheid, tintelingen, een vreemd gevoel in de buik, een opgejaagd gevoel, irritatie, een slecht humeur, slapende lichaamsdelen – allerlei vreemde, vervelende symptomen – en zodra de volgende dosis begint te werken, stoppen ze weer.”

In het algemeen beginnen off-periodes als iemand ongeveer tien jaar Parkinson heeft. Iedereen ervaart Parkinson anders en dus zijn off-periodes ook voor elke persoon anders.

Gary legt uit hoe zijn off-periodes verlopen. “Het begint bij mij met trillingen in mijn hand en in mijn arm. Ik beweeg veel langzamer. Ik kan niet goed schrijven. Het is moeilijk om mijn telefoon te gebruiken. Ik voel me somber, ik ben nerveus. En ik vraag me af wanneer de off-periode weer over zal zijn. Off-periodes hebben een enorme impact op bijna alles.”

Het woord ‘off’ suggereert dat iemand plotseling heel hard achteruit gaat, maar het kan ook een geleidelijk proces zijn.

Omgeving en levensstijl, zoals eetpatroon, voeding, beweging en slaap, en ook het moment van de dag hebben allemaal een impact op iemands off-symptomen. Off-periodes kunnen zich zowel ‘s avonds als overdag voordoen. En ze kunnen ook plotseling en schijnbaar zonder reden gebeuren.

“Plotselinge off-periodes komen zelden voor maar als ze gebeuren, zijn ze heel slopend,” vertelt Gary. “Mijn off-periodes hebben nooit langer dan vier uur geduurd – dat was de langste – maar gebeuren wel bijna elke zes maanden en vaak op momenten dat ik het niet verwacht.”

Als iemand ineens meer off-periodes heeft dan normaal – binnen een aantal dagen of weken – heeft dat volgens Brian meestal een reden. Het is meestal een tijdelijke achteruitgang en betekent niet noodzakelijk dat uw Parkinson erger wordt. Maar het is belangrijk om contact op te nemen met uw zorgverlener, die u kan helpen om de oorzaak te achterhalen.

In de meeste gevallen heeft een plotselinge toename van het aantal off-periodes een van de volgende 10 oorzaken:

  1. U hebt last van constipatie. Hierdoor worden Parkinson-medicijnen minder goed door het lichaam opgenomen en zijn ze minder effectief.
  2. U bent ziek (u hebt bijvoorbeeld een urineweg- of luchtweginfectie, of griep) of u bent herstellende van een operatie. Dit belast het lichaam en kan ervoor zorgen dat uw symptomen tijdelijk verergeren.
  3. U zit in een periode van stress.
  4. U bent uitgedroogd. Hierdoor neemt het bloedvolume af, waardoor medicijnen minder goed worden opgenomen.
  5. U neemt uw medicatie op de verkeerde tijdstippen of uw medicatieregime is veranderd.
  6. U neemt medicijnen met een contra-indicatie voor een ander gezondheidsprobleem dan uw Parkinson, waardoor uw Parkinson-medicijnen minder effectief zijn.
  7. U bent depressief. Uw motorische en niet-motorische symptomen kunnen hierdoor verergeren.
  8. U hebt acute of chronische pijn.
  9. U bent angstig of hebt paniekaanvallen. Hierdoor kunnen uw motorische symptomen toenemen. Angst is ook een veelvoorkomend symptoom als de werking van een dosis Levodopa afneemt.
  10. U slaapt slecht. Wanneer u langere tijd niet goed slaapt, kunnen motorische functies (tijdelijk) verslechteren.

“Constipatie is een belangrijke factor, want dat voorkomt dat Levodopa wordt opgenomen,” vertelt Brian. “Als u ziek bent door een infectie of chirurgische ingreep, kunt u zich meer ‘off’ voelen omdat u medicijnen krijgt met een contra-indicatie voor uw eigen medicatie. Stress is ook een grote factor, die beslist een off-periode kan veroorzaken.

“Als je weet wat de oorzaak is, kun je die behandelen. Na een tijdje zijn ze weer terug op het niveau dat ze daarvoor hadden. Tenzij het met de medicatie verband houdt,” zegt hij.

Hij adviseert mensen met Parkinson om in een dagboek bij te houden wanneer ze off-periodes hebben, hoelang het duurt voor hun medicijnen werken en hoelang hun off-periodes duren, zodat ze dit aan hun zorgverlener kunnen doorgeven. Mensen met deze aandoening moeten een situatie vermijden waarbij ze in totaal acht uur per dag in een off-periode zitten.

Ten slotte raadt Brian mensen met Parkinson aan om zich aan het patroon van hun off-periodes aan te passen.

“Sommige mensen voelen zich ‘s ochtends heel goed. Naarmate de dag vordert, gaan ze zich slechter (off) voelen en zijn ze ‘s avonds dyskinetisch; dat is hun patroon. “Andere mensen voelen zich ‘s ochtends juist heel slecht, en naarmate de dag en de avond vorderen, gaan ze zich veel beter voelen. Dus pas uw dag en uw levensstijl aan als u weet dat deze periodes volgens een bepaald patroon verlopen.”

Als de off-periodes echt voor problemen gaan zorgen, zegt hij: “Vraag uw zorgverlener om hulp, om u te helpen uw symptomen beter te beheren. We kunnen heel snel vaststellen wat er aan de hand is.”

Parkinson’s Europe deelt dit artikel uitsluitend ter informatie; het is geen weergave van de opvattingen van Parkinson’s Europe, en Parkinson’s Europe wil hiermee geen specifieke behandelingen, therapieën of producten promoten.

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Que sont les phases OFF de la maladie de Parkinson ?

Découvrons plus en détail ce que sont les phases OFF et ce qu’il faut faire si elles augmentent brusquement
29 May 2025 Verity Willcocks Sponsored by Bial
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« La vérité, c’est que les phases OFF, c’est nul ! » s’emporte Gary Boyle, membre du Conseil de Parkinson’s Europe, chez qui la maladie a été diagnostiquée en 2011.

Une phase OFF de la maladie de Parkinson correspond à un moment où les médicaments contre la maladie de Parkinson ne font plus effet.

« Il s’agit d’un phénomène à la fois moteur et non moteur. Quel que soit leur profil moteur et leur profil non moteur, les patients peuvent donc subir une aggravation de ces symptômes », explique Brian Magennis, infirmier spécialisé à l’hôpital Mater de Dublin et membre du Conseil de Parkinson’s Europe. « Et lorsque les effets des médicaments s’atténuent, ils peuvent ressentir des symptômes non moteurs, comme un engourdissement, des picotements, une sensation particulière dans le ventre, une sensation d’agitation, d’irritabilité, de mauvaise humeur, des fourmillements, toutes sortes de symptômes étranges et impressionnants – et dès que la dose suivante fait effet, ces symptômes disparaissent. »

En règle générale, les phases OFF commencent à se produire quand une personne est atteinte de la maladie de Parkinson depuis une dizaine d’années. Et comme chaque personne ayant la maladie de Parkinson la ressent différemment, les caractéristiques de ces phases OFF varient aussi.

Gary nous explique à quoi ressemblent ses phases OFF : « Je commence à avoir les mains et les bras qui tremblent. Je deviens très lent. Je n’arrive plus vraiment à écrire. J’ai du mal à utiliser mon téléphone. Je me sens déprimé, nerveux. Je commence à me demander : « Quand la prochaine phase ON va-t-elle commencer ? » Les phases OFF impactent à peu près tout. »

Bien que les termes « ON » et « OFF » suggèrent un déclin brutal, une phase OFF peut correspondre à une détérioration plus progressive.

Des facteurs tels que l’environnement et le mode de vie (régime alimentaire, nutrition, exercice et sommeil), ou encore le moment de la journée, ont tous un impact sur l’état d’une personne pendant ses phases OFF. Celles-ci peuvent se produire aussi bien la nuit que dans la journée. Et elles peuvent aussi se déclencher de manière soudaine, et sans raison apparente.

« Les phases OFF soudaines sont assez rares, mais quand elles se produisent, c’est vraiment handicapant », explique Gary. « Je n’ai jamais eu de phase OFF de plus de quatre heures (c’est le pire des cas), mais cela m’arrive presque tous les six mois, et surtout quand je m’y attends le moins. »

Si vous subissez de manière soudaine, pendant quelques jours ou semaines, plus de phases OFF que d’habitude, il y a probablement une raison, selon Brian. Cette situation est généralement un revers temporaire et ne signifie pas nécessairement que votre maladie de Parkinson progresse. Mais il est important de consulter un professionnel de santé qui pourra vous aider à en identifier la cause.

Dans la plupart des cas, comme l’explique Brian, une augmentation brutale des phases OFF est due à l’une des 10 raisons suivantes :

  1. Vous êtes constipé. Cela peut affecter l’absorption de vos médicaments contre la maladie de Parkinson et les rendre moins efficaces.
  2. Vous êtes malade (vous avez une infection urinaire ou respiratoire, ou la grippe) ou vous vous rétablissez d’un acte chirurgical. Ces états exercent une tension sur le corps, ce qui peut provoquer une aggravation temporaire des symptômes.
  3. Vous traversez une période de stress.
  4. Vous êtes déshydraté. Cela peut réduire le volume sanguin et affecter l’absorption des médicaments.
  5. Vous ne prenez pas vos médicaments au bon moment, ou votre traitement a changé.
  6. Vous prenez un médicament contre-indiqué pour un problème de santé non lié à la maladie de Parkinson, et cela affecte l’efficacité de votre traitement contre la maladie de Parkinson.
  7. Vous êtes déprimé. La dépression peut provoquer une aggravation soudaine des symptômes moteurs et non moteurs.
  8. Vous souffrez de douleurs aiguës ou chroniques.
  9. Vous éprouvez de l’angoisse ou faites des crises de panique. Cela peut entraîner une augmentation des symptômes moteurs. L’angoisse est également un symptôme fréquent de l’épuisement de l’effet thérapeutique de la lévodopa en fin de dose.
  10. Vous ne dormez pas bien. Une longue période de mauvais sommeil peut altérer (temporairement) la fonction motrice.

« La constipation est une cause importante parce qu’elle bloque l’absorption de la lévodopa », explique Brian. « Après une intervention chirurgicale, ou si vous êtes malade suite à une infection, il est possible que vous ayez plus de phases OFF après avoir pris certains médicaments contre-indiqués. Le stress est également l’une des causes les plus courantes de phases OFF.

« Une fois que vous avez identifié et traité la cause, il suffit d’attendre un peu pour que les effets reviennent à ce qu’ils étaient à la base. À moins que les symptômes ne soient liés aux médicaments. »

Brian conseille aux personnes atteintes de la maladie de Parkinson de tenir un journal de leurs phases OFF, en notant combien de temps leurs médicaments ont mis à agir et quelle a été la durée de leurs effets, afin de le montrer à leur professionnel de santé. Les personnes atteintes de la maladie de Parkinson devraient éviter de rester dans une situation où leurs phases OFF atteignent une durée totale de huit heures sur une journée.

Enfin, Brian conseille aux malades de Parkinson de s’adapter au rythme de leurs phases OFF.

« Certaines personnes se sentent vraiment bien le matin, puis fatiguent au fur et à mesure de la journée et sont plus en phase OFF et dyskinétiques le soir, et c’est leur rythme. D’autres se sentent vraiment mal le matin, et de mieux en mieux au fur et à mesure de la journée et jusque dans la soirée. Alors, si vous connaissez votre rythme, adaptez votre journée et votre style de vie en conséquence. »

Et si les phases OFF deviennent problématiques : « Allez voir votre professionnel de santé afin qu’il vous aide à mieux les gérer. Nous pouvons identifier ce qui se passe très rapidement. »

Parkinson’s Europe partage cet article à titre informatif seulement ; il n’est pas représentatif du point de vue de Parkinson’s Europe ni de son approbation de traitements, thérapies ou produits particuliers.

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Was versteht man bei der Parkinson-Krankheit unter OFF-Phasen?

Wir erfahren mehr über die sogenannten OFF-Phasen und was zu tun ist, wenn diese plötzlich häufiger werden
29 May 2025 Verity Willcocks Sponsored by Bial
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„Die Realität ist: OFF-Phasen sind unerträglich!“, so Gary Boyle, ein Vorstandsmitglied der Parkinson‘s Europe, der 2011 die Diagnose Parkinson erhielt.

Eine OFF-Phase tritt ein, wenn die Wirkung von Parkinson-Medikamenten nachlässt.

„Es ist sowohl ein motorisches als auch ein nicht-motorisches Phänomen. Unabhängig vom motorischen und nicht-motorischen Profil eines Menschen können sich diese Symptome verschärfen“, erklärt Brian Magennis, Advanced Nurse Practitioner am Mater Hospital in Dublin und Vorstandsmitglied von Parkinson‘s Europe. „Und mittendrin, während das OFF-Phänomen beginnt, können nicht-motorische Symptome wie Taubheitsgefühl, Kribbeln, ein seltsames Bauchgefühl, Unruhe, Reizbarkeit, Übellaunigkeit oder Ameisenlaufen auftreten – alle möglichen befremdlichen Symptome. Und sobald die Wirkung der nächsten Dosis einsetzt, verschwinden diese wieder.“

Im Allgemeinen beginnen OFF-Phasen rund zehn Jahre nach dem Beginn der Parkinson-Krankheit. In einigen Fällen können sie bereits 4 bis 6 Jahre nach der Diagnose auftreten. Und ebenso wie jeder Mensch mit Parkinson die Erkrankung anders erlebt, unterscheiden sich auch die Merkmale der OFF-Phasen.

Gary Boyle berichtet, wie seine OFF-Phasen aussehen: „Meine Hand und mein Arm beginnen zu zittern. Ich werde sehr langsam. Ich kann nicht mehr schreiben. Es fällt mir schwer, mein Telefon zu benutzen. Ich bin deprimiert, nervös. Ich frage mich: Wann kehre ich in die ON-Phase zurück? Die OFF-Phase wirkt sich sowohl auf motorische, als auch auf nichtmotorische Symptome aus.“

Obwohl die Begriffe ON und OFF – also AN und AUS – eine rapide Verschlechterung nahelegen, kann die OFF-Phase auch graduell eintreten.

Faktoren wie Umwelt und Lebensweise – Ernährung, körperliche Aktivität und Schlaf – und die Tageszeit wirken sich auf die OFF-Phase aus. OFF-Phasen können nicht nur tagsüber auftreten, sondern auch nachts. Und sie können auch ganz plötzlich einsetzen – ohne offensichtlichen Grund.

„Plötzliche OFF-Phasen sind recht selten, aber wenn sie eintreten, sind sie eine enorme Behinderung“, sagt Gary Boyle. „Meine OFF-Phasen waren bisher nie länger als vier Stunden – das ist der schlimmste Fall –, aber das passiert fast alle sechs Monate, und zwar immer dann, wenn man es am wenigsten erwartet.“

Wenn plötzlich – innerhalb weniger Tage oder Wochen – mehr OFF-Phasen als üblich auftreten, gibt es wahrscheinlich einen Grund dafür, betont Brian Magennis. Diese Situation ist normalerweise ein vorübergehender Rückschlag und bedeutet nicht unbedingt, dass die Parkinson-Krankheit voranschreitet. Aber es ist wichtig, medizinischen Rat einzuholen, um die Ursache zu ermitteln.

In den meisten Fällen ist eine plötzliche Zunahme von OFF-Phasen auf einen von zehn Gründen zurückzuführen, so Brian Magennis:

  1. Sie sind erkrankt (zum Beispiel an einer Harnwegs- oder Atemwegsinfektion oder an Grippe) oder Sie haben einen chirurgischen Eingriff hinter sich. Diese Faktoren belasten den Körper und können zu einer zeitweiligen Verschlechterung der Symptome führen.
  2. Sie leiden an akuten oder chronischen Schmerzen.
  3. Sie sind dehydriert. Dies kann das Blutvolumen reduzieren und sich auf die Resorption von Medikamenten auswirken.
  4. Sie haben Verstopfung. Dies kann die Resorption von Parkinson-Medikamenten beeinflussen und ihre Wirkung beeinträchtigen.
  5. Sie nehmen Ihre Medikamente nicht zum richtigen Zeitpunkt ein, oder Ihr Medikationsschema hat sich geändert.
  6. Sie nehmen ein kontraindiziertes Arzneimittel für ein nicht Parkinson-bezogenes Gesundheitsproblem ein, das die Wirksamkeit Ihres Parkinson-Medikaments beeinträchtigt.
  7. Sie stehen momentan unter starkem Stress.
  8. Sie schlafen schlecht. Schlafstörungen über einen längeren Zeitraum hinweg können die Motorik – zeitweilig – beeinträchtigen.
  9. Sie leiden an Angstzuständen oder Panikattacken. Dies kann zu einer Zunahme der motorischen Symptome führen. Angstzustände sind auch ein häufiges Symptom, wenn die Wirkung einer Levodopa-Dosis abklingt.
  10. Sie sind depressiv. Dies kann zu einer plötzlichen Verschlimmerung sowohl der motorischen als auch der nicht motorischen Symptome führen.

„Verstopfung ist ein wichtiger Faktor, weil sie die Resorption von Levodopa blockiert“, so Brian Magennis. „Und bei einer Infektionserkrankung oder nach einem chirurgischen Eingriff sind OFF-Phasen häufiger, denn Sie sind möglicherweise mit kontraindizierten Arzneimitteln behandelt worden. Auch Stress ist ein wichtiger Auslöser von OFF-Phasen.

Sobald die Ursache ermittelt und behandelt wurde und ein wenig Zeit vergangen ist, erreichen die Betroffenen wieder ihren Ausgangszustand. Es sei denn, die Probleme sind medikamentös bedingt“, sagt Magennis.

Er empfiehlt Menschen mit Parkinson, Tagebuch über ihre OFF-Phasen zu führen und aufzuzeichnen, wie lange es dauert, bis ihre Medikamente wirken, und wie lange die Wirkung anhält. Diese Informationen können dann mit dem Arzt, der die Parkinson Krankheit behandelt, besprochen werden. Menschen mit der Parkinson-Erkrankung sollten Situationen vermeiden, in denen sie beispielsweise  insgesamt acht Stunden am Tag eine OFF-Phase durchlaufen.

Abschließend rät Brian Magennis Parkinson-Patientinnen und -Patienten, sich auf das Muster ihrer OFF-Phasen einzustellen.

„Manchen Patienten geht es morgens sehr gut, aber das nimmt im Laufe des Tages ab und abends sind sie in einer OFF-Phase mit stärkeren Bewegungsstörungen. Das ist ihr Muster. Andere sind morgens stark beeinträchtigt, aber im Laufe des Tages nehmen die Symptome ab und abends geht es ihnen viel besser. Wenn Sie also wissen, dass ein Muster vorliegt, sollten Sie Ihren Tagesablauf und Ihre Lebensweise darauf einstellen.“

Wenn OFF-Phasen zum Problem werden, rät er: „Ihre behandelder Arzt kann Ihnen helfen, die Krankheit besser zu managen.“

Parkinson’s Europe veröffentlicht diesen Artikel ausschließlich zu Informationszwecken; er repräsentiert nicht die Ansichten von Parkinson’s Europe und stellt keinerlei Unterstützung für bestimmte Behandlungen, Therapien oder Produkte seitens Parkinson’s Europe dar.

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¿Qué son los periodos OFF en la enfermedad de Parkinson?

Profundizamos en los periodos OFF y en qué hacer si aumentan de forma repentina.
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«La realidad de los periodos OFF es que son horribles», comenta Gary Boyle, miembro de la Junta de Parkinson’s Europe, diagnosticado de Párkinson en 2011.

Los periodos OFF en la enfermedad de Parkinson se producen cuando disminuye el efecto de la medicación.

«Se trata de un trastorno a nivel motor y no motor, así que, independientemente de cómo sea el perfil motor y laíndole del paciente, los síntomas pueden empeorar», explica Brian Magennis, enfermero especializado en el Mater Hospital de Dublín y miembro de la Junta de Parkinson’s Europe. «En plena crisis, cuando el tratamiento va dejando de hacer efecto, pueden aparecer síntomas no motores como entumecimiento, hormigueo, malestar estomacal, agitación, irritabilidad, mal humor, hormigueo… Todo tipo de síntomas raros y peculiares que luego, en cuanto la siguiente dosis hace efecto, desaparecen».

En términos generales, los episodios OFF comienzan a producirse cuando la persona lleva padeciendo Párkinson alrededor de diez años. En algunos casos, pueden ocurrir entre 4 y 6 años después del diagnóstico. Del mismo modo que cada persona con Párkinson experimentará la enfermedad de forma diferente, las características de sus periodos OFF también variarán.

Gary explica cómo son sus episodios OFF. «Me empieza a temblar la mano y el brazo. Voy muy lento. No puedo escribir bien. Me cuesta usar el teléfono. Me noto alicaído y nervioso. Empiezo a preguntarme cuándo volveré a la fase ON. El episodio OFF afecta prácticamente a todo».

Aunque los términos «ON» y «OFF» sugieren una empeoramento repentino, el paso  al estado OFF se asemeja más a un deterioro gradual.

Algunos factores, entre los que se incluyen el entorno, el estilo de vida (como la dieta, la nutrición, el ejercicio y el sueño) y la hora del día, influyen en el estado OFF del paciente. Los episodios OFF pueden producirse tanto de noche como de día. Y también pueden aparecer de repente, aparentemente sin ningún motivo.

«Los periodos OFF repentinos son bastante raros, pero, cuando se producen, son muy debilitantes», afirma Gary. «Nunca he tenido un episodio OFF de más de cuatro horas, en el peor de los casos, pero me ocurre cada seis meses aproximadamente y cuando menos me lo espero».

Brian puntualiza que cuando, de repente, durante algunos días o semanas, experimenta más periodos OFF de las habituales, es muy probable que haya un motivo. Esta situación normalmente constituye un retroceso temporal y no significa necesariamente que el párkinson esté avanzando. Pero es importante consultar a un profesional sanitario para que ayude a identificar la causa.

En la mayoría de los casos, un aumento repentino de los periodos OFF se debe a alguno de los siguientes 10 motivos, explica Brian:

  1. Enfermedad como, por ejemplo, alguna infección urinaria, respiratoria o una gripe, o la convalecencia tras una intervención quirúrgica. Estas situaciones estresan el organismo y pueden provocar un empeoramiento temporal de los síntomas.
  2. Dolor agudo o crónico.
  3. Deshidratación. Puede reducir la volemia y afectar a la absorción de la medicación.
  4. Estreñimiento. Puede afectar a la absorción de la medicación para el párkinson y reducir su efectividad.
  5. No tomar la medicación a las horas correctas, o cambiar el régimen de medicación.
  6. Tomar un fármaco contraindicado para algún problema de salud no relacionado con el párkinson que hace que la medicación para esta enfermedad sea menos efectiva.
  7. Periodos de estrés.
  8. Falta de sueño. Un periodo prolongado de de insomnio o trastornos del sueño puede afectar, temporalmente, a la función motora.
  9. Ataques de ansiedad o de pánico. Pueden ocasionar un aumento de los síntomas motores. La ansiedad también es un síntoma frecuente de que la dosis de levodopa está dejando de hacer efecto.
  10. Depresión. Puede provocar un empeoramiento abrupto de los síntomas tanto motores como no motores.

«El estreñimiento es una de las más importantes, porque afecta a la absorción de levodopa», afirma Brian. «Si el paciente padece una infección o se somete a una intervención quirúrgica, es posible que tenga más episodios OFF, porque puede haber tomado alguna medicación contraindicada. El estrés es un factor importante que puede inducir periodos OFF.

«Cuando se identifica la causa, hay que tratar y esperar a que la situación se reestablezca. Todo vuelve al punto de partida. A menos que esté relacionado con la medicación», puntualiza.

Brian aconseja a las personas con párkinson que lleven un diario de sus periodos OFF y registren cuánto tarda la medicación en hacer efecto y cuánto dura, para poder informar a su médico. Las personas con esta enfermedad deberían evitar situaciones en las que pasan un total de, digamos, ocho horas al día en estado OFF.

Por último, Brian aconseja trabajar en el patrón de los episodios OFF.

«Algunas personas se encuentran muy bien por la mañana y, a medida que avanza el día, van empeorando y sintiendo más discinesia al atardecer; ese es su patrón. Otras se levantan muy mal y van mejorando mucho a medida que avanza el día. Por tanto, si se conoce el patrón, conviene programar el día y llevar un estilo de vida acorde con él».

Si los episodios  OFF se convierten en un problema, explica: «Es necesario recurrir a nuestro médico para que nos ayude a gestionar mejor las cosas.».

Parkinson’s Europe comparte este artículo solo con fines informativos; no representa su punto de vista ni supone ninguna propuesta de ningún tratamiento, terapia ni producto en especial por su parte.

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Cosa sono i periodi OFF nel Parkinson?

Conosciamo meglio i periodi OFF e scopriamo come comportarci in caso di aumento improvviso della loro frequenza
29 May 2025 Verity Willcocks Sponsored by Bial
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“Inutile girarci attorno: i periodi OFF sono orribili”, afferma Gary Boyle, Membro del Consiglio Direttivo di Parkinson’s Europe, al quale è stato diagnosticato il Parkinson nel 2011.

Un periodo OFF si verifica quando diminuisce gradualmente l’effetto del farmaco per il Parkinson.

“È un fenomeno sia motorio sia non motorio per cui, a prescindere dal quadro motorio e non motorio, si può verificare un peggioramento dei sintomi”, ha spiegato Brian Magennis, Infermiere specializzato presso l’ospedale Mater Hospital di Dublino, nonché Membro del Consiglio Direttivo di Parkinson’s Europe. “E poi, in questi episodi di passaggio allo stato OFF, possono subentrare sintomi non motori, ad esempio intorpidimento, prurito, uno strano fastidio allo stomaco, agitazione, irritabilità, scontrosità, formicolio: tutta una serie di sintomi strani e incredibili che, appena fa effetto la dose successiva, scompaiono”.

Generalmente, i periodi OFF iniziano a verificarsi quando una persona soffre di Parkinson da una decina di anni. In alcuni casi, possono verificarsi già da 4 a 6 anni dopo la diagnosi. Proprio come avviene con la malattia, che si manifesta in modo diverso da persona a persona, anche le caratteristiche dei periodi OFF variano.

Gary ci ha offerto la sua testimonianza. “Il primo sintomo a comparire è il tremore alla mano e al braccio. Mi muovo con grande lentezza. Non riesco a scrivere. Ho difficoltà a usare il telefono. Mi sento giù, nervoso. Inizio a chiedermi quando inizierà di nuovo una fase ON. Lo stato OFF incide praticamente su tutto”.

Sebbene i termini “ON” e “OFF” facciano pensare a un peggioramento repentino, il passaggio allo stato OFF tende a manifestarsi come un deterioramento graduale.

Sullo stato OFF di una persona incidono vari fattori, tra cui l’ambiente, lo stile di vita (regime dietetico, nutrizione, esercizio fisico e sonno) e il momento della giornata. I periodi OFF possono presentarsi di notte così come nel corso della giornata. E poi, possono insorgere all’improvviso, senza alcun motivo apparente.

“I periodi OFF improvvisi sono piuttosto rari, ma quando si verificano sono davvero debilitanti” ci ha raccontato Gary. “Non mi è mai capitato che un periodo OFF durasse più di quattro ore (questo è il peggiore dei casi che abbia vissuto), ma questi episodi si ripetono con una frequenza quasi semestrale e accadono quando meno te lo aspetti”.

Brian ha sottolineato che, se all’improvviso (nell’arco di pochi giorni o poche settimane) si verificano più periodi OFF del solito, probabilmente c’è un motivo. Di solito si tratta di una situazione temporanea, che non necessariamente indica una progressione del Parkinson. È comunque importante rivolgersi a un medico per risalire alla causa.

Brian ha precisato che, nella maggior parte dei casi, un aumento improvviso dei periodi OFF è dovuto a una di queste dieci cause:

  1. Non stai bene (ad esempio, hai un’infezione urinaria o toracica o l’influenza), oppure sei in fase di recupero post-operatorio. Tali condizioni mettono a dura prova l’organismo e ne può conseguire un peggioramento temporaneo dei sintomi.
  2. Soffri di un dolore acuto o cronico.
  3. Il tuo corpo è disidratato. Tale condizione può ridurre il volume del sangue e influire sull’assorbimento del farmaco.
  4. Soffri di stipsi. Tale condizione può influire sull’assorbimento del farmaco per il Parkinson e ridurne l’efficacia.
  5. Non stai assumendo il farmaco agli orari corretti, oppure il tuo regime farmacologico è cambiato.
  6. Stai assumendo un farmaco controindicato per un problema di salute diverso dal Parkinson e tale terapia sta riducendo l’efficacia del farmaco per il Parkinson.
  7. Stai attraversando un periodo stressante.
  8. Non dormi bene. Un periodo prolungato di insonnia o sonno disturbato può pregiudicare (temporaneamente) la funzionalità motori
  9. Soffri di ansia o attacchi di panico. Tali stati possono determinare un aumento dei sintomi motori. L’ansia rappresenta anche un sintomo frequente della riduzione dell’efficacia di levodopa, chiamata effetto di wearing off, o di fine dose.
  10. Soffri di depressione. Tale condizione può causare un peggioramento improvviso dei sintomi sia motori sia non motori.

“La stipsi incide notevolmente, perché compromette l’assorbimento di levodopa” ha chiarito Brian. “Se hai contratto un’infezione o hai subito un intervento chirurgico, potresti andare incontro a fasi di OFF più intense, perché potresti dover assumere alcuni farmaci controindicati. Lo stress è un fattore importante, che incide notevolmente sull’insorgere delle fasi OFF”.

“Una volta identificata la causa, bisogna trattarla e attendere: la situazione si ristabilizzerà. A meno che sia correlata al farmaco”, ha aggiunto.

Brian consiglia alle persone con la malattia di Parkinson di tenere un diario dei periodi OFF da mostrare al proprio medico, in cui annotare il tempo necessario perché i farmaci abbiano effetto e la durata dell’efficacia. Le persone con questa malattia devono cercare di evitare situazioni di notevole disagio, come avviene se ci si trova in fase OFF per otto ore al giorno.

Infine, Brian consiglia alle persone con il Parkinson di modificare la propria routine in funzione dell’andamento dei propri periodi OFF.

“Alcune persone al mattino stanno bene; poi, col passare delle ore, l’effetto del farmaco diminuisce e verso sera subentra la fase OFF e si accentua la discinesia: questo è il loro pattern. Altre persone stanno molto male al mattino e col passare delle ore e l’avvicinarsi della sera, stanno molto meglio. Quindi, se si riconosce la presenza di uno schema ricorrente, è opportuno adattare la propria giornata e il proprio stile di vita di conseguenza”.

Se i periodi OFF diventano difficilmente tollerabili, la raccomandazione di Brian è: “Consultate il vostro medico perché vi aiuti a gestire meglio la situazione.”.

Questo articolo è stato distribuito da Parkinson’s Europe unicamente a fini informativi; il testo non riflette le opinioni di Parkinson’s Europe e non costituisce un avallo da parte di Parkinson’s Europe di specifici trattamenti, terapie o prodotti.

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