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Superman star Valerie Perrine: “I don’t dwell on the past or worry about the future”

Hollywood actor Valerie Perrine, star of Lenny and Superman, shares her experience of living with Parkinson's
21 July 2025 By Scarlett Sherriff
Stories CelebritiesinterviewWomen and Parkinson's
"I kept my Parkinson's a secret at Hollywood for as long as I could," says Valerie Perrine.

Hollywood actor Valerie Perrine has starred in roles across Hollywood’s big screens, from Honey Bruce in ‘Lenny’ to playing Lex Luther’s companion Eve Teschmacher, alongside Christopher Reeve, in the original 1978 ‘Superman’.

More recently, she was featured in Stacey Souther’s documentary about her life and her experience with Parkinson’s. The acclaimed actor tells us about her career highlights and the impact of her diagnosis.

Valerie, please tell us a bit about yourself and your background as a Hollywood star.

I was an army brat (the child of military parents). I was born in Galveston, Texas, US, and grew up in Japan and Scottsdale, Arizona, US. When I was 19 years old, I ran away from home to Las Vegas, where I became a showgirl.

Valerie Perrine starred as Lex Luther's companion Eve Teschmacher, alongside Christopher Reeve, in the original 1978 ‘Superman’.

I stayed there for around eight years or so when I decided I needed a change. I moved to Hollywood, where I was discovered and became an actress. I’ve lived all over the world, but I live in Los Angeles now.

Acting wasn’t something I pursued. I was at a small dinner party where an agent was looking for someone to play the role of Montana Wildhack in George Roy Hill’s film production of ‘Slaughterhouse-Five’. The agent saw something in me and thought I would be perfect for the part. That’s how I became an actress.

Valerie Perrine relaxing.
Valerie Perrine became an actor after being spotted at a dinner party.

What memories and highlights stand out to you from your early Hollywood career?

I have a lot of great memories from my career, and I was fortunate enough to work with some of the greatest people in the business at the time, in the ’70s.

The film I’m most proud of is ‘Lenny’ (1974), a biographical drama about the comedian Lenny Bruce. I played Honey Bruce, an American showgirl who had been his wife, while Dustin Hoffman played Lenny himself. It was directed by Bob Fosse, who knew exactly what he wanted from me and how to get it. Working alongside Dustin, one of the most talented actors of his era, was a blessing.

Everything came together, and we created something magical. I won Best Actress for that role at the Cannes Film Festival in 1975. It was a lot of hard work but a lot of fun, too. It was my favourite experience acting, and that film catapulted me into being a movie star.

Please tell us about your experience being diagnosed with Parkinson’s.

I first noticed I had a tremor on a movie set. I was carrying dishes in a scene, and we were doing multiple takes. The sound man came over and asked me not to shake them so much. That was the first time I noticed I had tremors.

I was diagnosed with essential tremors first. Then my Parkinson’s diagnosis came years later. It took a while to figure out what I had.

Hollywood film star Valerie Perrine

What was the reaction to your diagnosis like?

Everyone in my family and my friends was surprised and supportive. It wasn’t public knowledge until much later – I kept it a secret at Hollywood for as long as I could. My work ethic is that the show must go on.

The community was very supportive. The last film I did was called ‘Silver Skies’, directed by Rosemary Rodriguez. When she and I met to discuss the role, I told her what my difficulties were, and she told me not to worry and reassured me that we’d work around them. She’s an angel.

How have you managed your Parkinson’s?

I take medications, and I had deep brain stimulation. Those help. Marijuana has also helped.

I’ve always lived in the moment. I don’t dwell on the past or worry about the future. I try to live for today, and Parkinson’s hasn’t changed that.

What was it like to work with director Stacey Souther on the documentary ‘Valerie’?

Stacey and I are best friends – he’s like a son to me. He did an incredible job and really captured my spirit. I’m very proud of him and the film.

The most rewarding part was when the film was considered for the Oscars. Stacey did a lot of work for several years, so seeing the film get recognition made us both very happy.

The most challenging aspects of doing the Valerie documentary were when I wasn’t feeling very well. I knew these were times he had to capture, and he always made sure I felt comfortable and okay.

What advice would you give to someone going through a Parkinson’s diagnosis right now?

Be positive. Be strong. Stay active.

Images: Courtesy of Valerie Perrine and Stacey Souther

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“Painting was a deep, lifelong calling”: artist Odysseas Oikonomou on how Parkinson’s has affected his passion

17 July 2025 By Verity Willcocks
Stories artcreativityGreece

Here, artist Odysseas Oikonomou, a 58-year-old person with Parkinson’s who lives in Athens, Greece, tells Parkinson’s Life how he will not give up painting even though his Parkinson’s symptoms have drastically reduced his output.

And he also has a powerful message for other people with Parkinson’s: do not stop doing what you love.

Odysseas, what does painting mean to you?

“Art is everything to me – it is the reason I exist. It is not just a passion; it is the core of my being.

“I mainly paint portraits of children, but inspiration can come from everything around me – and everything within me. I see the world with the eyes of a painter, even when I am not holding a brush.”

Have you always been artistic?

“I started painting when I was just five years old. It has always been part of who I am. For most of my life, I worked professionally as a painter, selling them to local galleries.

“Painting was not just a profession, but a deep, lifelong calling.

“Now, due to Parkinson’s, I am considered disabled – but I continue to create, even if the process has changed.”

What were your first Parkinson’s symptoms and when were you diagnosed?

“The first signs of Parkinson’s appeared in 2017, when I began experiencing difficulties with my right hand – the one I use to paint. In 2021, a tremor emerged, and that year I was officially diagnosed with Parkinson’s.”

How does Parkinson’s affect your daily life?

“I take ropinirole, levodopa, carbidopa and amantadine to help manage the condition. Even so, Parkinson’s has a deep impact on my daily life.

“I experience stiffness, fatigue, problems with balance and movement, dizziness and, at times, an overwhelming lack of energy. Every day requires adjustment – physically, mentally and emotionally.”

How has Parkinson’s affected your painting?

“Since my diagnosis, my productivity has fallen drastically – I would say by 90–95 per cent. Painting has become physically exhausting. I can only paint for a few hours, and only on some days.

“My body is in pain, I often lack energy and my ability to concentrate has declined. These limitations are deeply frustrating – it feels as if my own body is betraying me.

Painter Odysseas Oikonomou

“And yet, my mind remains active. My thoughts, ideas and inner visions continue. Despite the obstacles, I have made emotional and intellectual progress. Art helps me psychologically – it fills my soul, nourishes me and gives meaning to moments that would otherwise feel empty.

“But the energy deficit and the physical strain are decisive. I no longer practise any other form of art – painting is all I can manage, and even that comes at great cost.”

Do you have any advice for other people with Parkinson’s?

“My advice to others with Parkinson’s – and it is also the advice given by many doctors I trust – is: do not stop doing what you love, no matter the cost.

“Even if you can only do a little, even if it hurts, even if the results come slowly – continue. Because it keeps your soul alive. I simply continue what I have always done – to complete the creative journey I started.

Art by Odysseas Oikonomou

“I do not link my art to the illness, because the art I serve stands above any illness. Painting belongs to the timeless and the sacred – not to the temporary suffering of the body. And I feel honoured to still walk that path, even if slowly, even if in pain.”

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“You have to build a community”: Movers and Shakers’ podcast’s Rory Cellan-Jones on taking the Parky Charter to Parliament

Movers and Shakers podcast presenter Rory Cellan-Jones on the battle to collect 100,000 signatures for their parliamentary petition to have the Parky Charter debated in the UK Parliament
15 July 2025 By Verity Willcocks
Stories advocacyRory Cellan-JonesUK

On 10 March, the presenters behind the well-known UK Parkinson’s podcast Movers and Shakers reignited their Parky Charter campaign by starting an official parliamentary petition.

Their aim is for the ‘Increase funding for people with Parkinson’s and implement the “Parky Charter”’ petition to obtain 100,000 signatures by 10 September 2025. If successful, the five-point Parky Charter will then be debated in the UK Parliament.

The charter has identified areas for improvement in Parkinson’s care, ranging from quicker diagnosis to increasing the amount spent on research. It is hoped to kickstart change for people with Parkinson’s in the UK.

The Parky Charter was put together last year by the Movers and Shakers podcasters – former BBC broadcasters Jeremy Paxman, Mark Mardell and Rory Cellan-Jones, former High Court judge Sir Nicholas Mostyn, co-writer of British comedy series Vicar of Dibley Paul Mayhew-Archer, and BBC correspondent Gillian Lacey-Solymar.

On World Parkinson’s Day 2024, the group memorably assembled outside 10 Downing Street, London, to present the-then Prime Minister Rishi Sunak with a 20,000-signature petition for the government to implement their Charter.

Sign the Parky Charter petition

Now, with the new petition having clocked up more than 95,000 signatures at the time of writing, 67-year-old former BBC journalist and Movers and Shakers presenter Rory Cellan-Jones – who was diagnosed with Parkinson’s in 2019 – explains why the journey is just as important as the goal.

How did the Movers and Shakers podcast lead to the Parky Charter?

“It was March 2023, the first episode. It just took off, and we had the most amazing reaction from listeners. Lots of people saying, ‘Thank goodness this is being talked about’ and ‘It is entertaining’ and ‘You are reflecting what we are experiencing’. But also, lots of people were telling us how bad Parkinson’s care was.”

The idea for the Parky Charter began when Caroline Rassell, Chief Executive of Parkinson’s UK, challenged you, is that right?

“At a Parkinson’s UK event we were broadcasting from, Caroline told us to, as she put it, ‘Get aggy [annoyed]’. We produced this Parky Charter, and then we found ourselves promoting it and meeting politicians just before the 2024 general election campaign. Then during the election campaign, we actually had [now Health Secretary] Wes Streeting on [the podcast], making promises.”

Talk us through the five-point Parky Charter.

  1. Speedy Specialists, for people to be seen by a specialist within 18 weeks of a referral. “Speedy specialists, which is one of the key things, will take years [in view of the shortage of neurologists in the UK]. Because training a doctor does not happen overnight. We have got to make [neurology] a more fashionable thing. We need to tie the government down because it has made this commitment to have a number of extra appointments, and with the aim that no one should wait more than 18 weeks for a meeting with a specialist for diagnosis.”
  2. Instant Information. “It is still shocking how people walk out of a diagnosis meeting knowing very little [about Parkinson’s]. It is very common to not be told about things like diet and exercise, which turn out to be important. There is a good Parkinson’s UK folder that some places give people. That needs to be made standard.”
  3. Parkinson’s Passport, giving people with Parkinson’s certain benefits automatically. “That is an idea with various aspects to it. It is about people standing up on trains so that you can sit down, but it is also about benefits. There is a lot of ignorance. We hear tales of people who are told, “Well, you may not be fit for work today, but maybe in a couple of months you’ll get better.” So basically, it’s another means of promoting public understanding.”
  4. Comprehensive Care? “As well as a neurologist, we think people need access to a Parkinson’s nurse, above all. But also, physiotherapists, nutrition experts – it is basically a call for a more flexible way of dealing with Parkinson’s.”
  5. Quest for a Cure. “This one is just about the tiny amount of government money that goes into Parkinson’s research. I think Parkinson’s UK did a Freedom of Information request and found that in the 2021/2022 financial year, the total spent directly on Parkinson’s research [in the UK] was around £6m, which is, as I pointed out to my MP, the price of one of the bigger houses [in London].”

You had a Parky Charter petition for World Parkinson’s Day 2024, didn’t you. Then, you started the new one this year.

“We began to realise that what you needed was one of these parliamentary petitions, which is official, and where [the government] have to respond at certain levels.

“I am kind of obsessed with it at the moment. I’ve worked out that we need to get upwards of probably about 650 signatures every day between now and 10 September to get to 100,000. And we were some days getting only 300 and now we’ve upped our activity.”

So your focus at the moment is to reach 100,000 signatures and get the Parky Charter discussed in the UK Parliament?

“There has been a backbench debate in Parliament. But what’s great about this is it is a hat to hang your campaign on. Yes, it would be great to have the debate, but it’s also just the very process of getting out and getting names, educating people about Parkinson’s.

“I am having conversations all the time about Parkinson’s that I would not be having if we weren’t on this journey. So, the destination is important; the journey is also very important.”

Because you’re raising awareness all the time?

“Yeah, and also it’s great for [Parkinson’s] community groups. We’ve started a competition, saying we’ll make an episode of the podcast with the group that gets the highest number of signatures.

“What we really need to do is encourage local groups, because, you know, we can’t on our own go out into every town centre and read the message [to sign the petition], but we can give you a template for a leaflet. We can give you a QR code. So that is the appeal. Please do it.”

What tips would you give those in other countries who want to run a similar campaign to improve life for people with Parkinson’s?

“For a campaign, obviously, you have got to build a community. You have got to rely on people with Parkinson’s coming together, so you have got to have some sort of forum. You can’t start from nowhere. And we were fortunate enough with that.

Movers & Shakers’ Rory Cellan-Jones: "Our podcast doesn’t have huge download numbers, but the listeners we have are very, very dedicated"

“Our podcast doesn’t have huge download numbers, but the listeners we have are very, very dedicated. So, we have this community, and we are not at all experienced campaigners. At the moment, we have got this petition.

“But obviously, social media is vital these days, and you have got two quite different audiences. You have got the Parkinson’s community, who may not be – this is obviously a massive generalisation – technically aware or social media savvy.

“And then your other audience is the rest of society, who you really want to be onside. You have to reach them in different ways. I mean, we have been out promoting this petition. I have got a T-shirt with a QR code on the back that people can scan.

“First of all, think, what are we trying to achieve? Then, have a reasonably simple message, and then get out there and spread it. I was keen that [the Charter] was focused, so that we had no more than five principles in it. Social media can only get you so far. I think going and meeting people face to face is quite powerful. Politicians, but also just people in the street. You need a call to action – sign our petition, or whatever.”

Have you got any plans for the Movers and Shakers podcast?

“What is amazing is, we are carrying on. Over the summer, we have got four people being profiled, including the novelist Linda Grant, and a man called Jagdeep Aujla [a man with Parkinson’s who runs boxing classes in London for others with the condition].

Movers & Shakers podcasters – former BBC broadcasters Jeremy Paxman, Mark Mardell and Rory Cellan-Jones, former High Court judge Sir Nicholas Mostyn, co-writer of British comedy series Vicar of Dibley Paul Mayhew-Archer, and BBC correspondent Gillian Lacey-Solymar

“Then we are preparing series six, which will start going out in September. We have already recorded two episodes – one of them about cannabis, interestingly. They will go out once a week on a Saturday.

“What we are finding is that the back catalogue is very important. We encourage people to go back to the beginning and listen to the ones about diagnosis and so on. And there are ones about nutrition, about exercise, so there are more than 70 episodes now. They are all available free of charge.”

You’re basically offering light entertainment and information at the same time.

“Yeah. What I often say in my intro is, “We’re here for a bit of a laugh and a bit of a moan.” That is what people do in the pub.”

Is there anything else you would like to add?

“Sign the petition! There are supposed to be around 150,000 people with Parkinson’s in the UK, and when you add in their relatives, approaching a million people are directly affected by it. So, it shouldn’t be hard to get 100,000 signatures but the message just needs to get out there.”

Sign the Parky Charter parliamentary petition

 

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Adapt and grow: how rock climber Jordi Cruz is using his Parkinson’s diagnosis to fuel a Paralympic dream

Madrid-based rock climber Jordi Cruz on how his early-onset Parkinson's diagnosis has influenced his physiotherapy career and shaped a dream to compete in the Los Angeles 2028 Paralympics
10 July 2025 By Christy McGhee
Stories climbingSpainsportYoung-onset Parkinson's

Madrid-based rock climber with Parkinson’s Jordi Cruz has been climbing since his early twenties. When faced with an early-onset diagnosis at the age of 39, the experienced climber could see one way forward: to adapt. He tells Parkinson’s Life how his diagnosis has shaped his approach to the sport, and has given rise to a Paralympic vision for 2028.

The physiotherapist also shares why he moved from working with high-performance athletes to exclusively treating people with Parkinson’s. And how his lived experience helps build a bond, and deeper understanding, with his clients.

Jordi, please tell us a little about yourself.

“My name is Jordi Cruz. I am 46 years and I live with my partner Rebeca in Madrid, Spain, whom I met one year after my diagnosis. I call her ‘my tulip’.

“After almost a year together we discovered that the tulip is the Parkinson’s symbol. Rebeca has a tattoo that is a tulip. She got it years ago before we met, as she lived in the Netherlands and this tattoo is in memory of her childhood there. Is this not curious? She with a tulip finding me? Or me finding her? Everything happens for a reason.”

You were diagnosed with young-onset Parkinson’s aged 39. What was your path to diagnosis like?

“I started to feel a small tremor when I extended my right arm. Also when I was brushing my teeth I realised my hand and arm were not really following the instructions of my brain. The same happened when I was writing, the pen just stopped! I was kind of frozen, at least that was my feeling.

“So I decided to visit the doctor. The doctor sent me to the neurologist and after some examinations he asked me, as I was a physiotherapist, what I thought my disease was. I replied ‘I believe I have ALS (Amyotrophic Lateral Sclerosis) and I might die’. Then I started to mention other diseases, the last one being Parkinson’s, and the neurologist told me that indeed it was.

What was your initial reaction to being diagnosed with Parkinson’s at a young age?

“I felt kind of relieved. As I was not going to die! When I left the doctor’s office I realised my price was not death, but there was a price I needed to pay. Also I started to think about all the projects I had planned. I needed to change them, or at least to adapt them to my new situation.

“From the beginning I decided not to hide my new situation, and to be open about it, so that people around me could understand what was happening.

“Also another important decision for me was to adapt my professional life. From working in a clinic I moved to the Madrid Parkinson’s Association to work only with people with Parkinson’s. Some people think that it might be a risky decision, as it is hard to see what is going to happen in my body. But I saw it as an opportunity to better understand this illness and take personal advantage of it.”

As a physiotherapist, who worked with high-performance athletes, how do you think this influenced your response to Parkinson’s?

“As I have been working in the past with high-performance athletes, I have learned to adapt myself to the different situations life brings me. One of the most important things those athletes have is they never give up! They always fight for their objective or target, so that has been a fantastic experience.”

For the past four years, you have been working at the Madrid Parkinson’s Association (APM). Tell us more.

“Well, this is quite a funny story. I wanted to change my professional life, and I was a member of the APM. I told my partner – who I had then just met – that I would love to work at APM. She suggested I open a Linkedin profile. I doubted, as I thought it was not a social space to find a place as physiotherapist. But then we saw an open position at APM! So I applied for it, and boom!

“My partner has always believed in me and supported all my changes from the moment we met. This is just another example of this. At APM I visit our ‘customers’ and help them with some exercises.

Madrid-based rock climber Jordi Cruz works at the Madrid Parkinson’s Association

“Working here made me feel that studying physiotherapy was the right decision. Sometimes during my career I doubted it was something that I really wanted. But working with them, encouraging them, receiving from them all the love, has made me realise how important this profession is and that it was definitely a good decision.

“For my clients, it was also good to have a therapist with this disease. It creates a strong relationship between them and me. It is an experience that is difficult to explain. Before my diagnosis I had also worked briefly with people with Parkinson’s. But once you have it yourself… the bond we create is so beautiful.”

How did you first discover rock climbing, and what does it mean to you?

“I met a girl that I really liked, and she told me she was dating a guy that was a rock climber. So I thought ‘I can also do that’, and went to buy my harness and climbing shoes. That was 24 years ago, she is now my best friend, she does not climb and here I am!”

How has Parkinson’s changed your experience of rock climbing?

“Well, I had and still have an amazing passion for this sport, so my level was quite high. For people familiar with rock climbing grades: I was sending 8b before diagnosis. The first years I was still trying to do some hard routes and I managed to do a couple of 7c+.

Madrid-based rock climber with Parkinson's Jordi Cruz

“My objective was to send 8b+, harder routes than before Parkinson’s, so that I could tell the world and myself that nothing was impossible. While trying and testing a 8b+ I broke a tendon in my finger! So I needed surgery and my finger has lost movement. Also Covid19 came, and my symptoms increased. So I adapted myself and started to do ‘easier routes’ but always around 7a.

“During the coronavirus, they opened a very big climbing gym close to where we live. And as I said, I always adapt myself. So I thought this was also going to be a great place to climb in a more controlled environment.”

How did you come to join the Para-climbing team of the Federación Madrileña de Montañismo?

“During a trip through Europe my partner Rebeca stayed a couple of days in Innsbruck, Austria, and we noticed a paraclimbing competition at a climbing hall we know there. Rebeca told me: ‘You can do that, you can also compete’. But at that stage I did not feel like it, and I rejected that idea.

“In September 2024, I heard about a guy who wanted to go by bike from one city to another in Spain, to spread the word about Parkinson’s. Something woke up inside me. I felt that I had to do something for people with Parkinson’s, and then I remembered what Rebeca told me years ago: ‘compete in paraclimbing’.

“Climbing is something I do well, I love, and overall I believe that climbing is an amazing sport for Parkinson’s. You work with balance, strength, coordination.

“And there, my challenge started! Competing in order to spread the word about Parkinson’s to the world. To encourage other Parkies to keep on dreaming awake, and let the world see with some studies that climbing has a lot of benefits for people with Parkinson’s.”

Please tell us more about your goals for the next few years, and what you hope to achieve for the Parkinson’s community?

“When I started to train in September 2024, I heard that climbing would be a parasport in the LA2028 Paralympic Games in Los Angeles, USA. There my project, ‘Dreaming Awake’ was born: to try to compete at the Paralympics.

“If I take part, the press will interview me. If I am in the press, the world will read about me and about Parkinson’s. As far as I know only one person with Parkinson’s has been at the Olympics, a rower from the USA. If I achieve this objective, I will be the first person competing in Paralympics in an individual sport.

“But the most important thing is not to achieve the objective. The most important thing is to enjoy and see all that is happening during this journey. I am in touch with universities that are willing to do studies about climbing and Parkinson’s. I am getting texts from people thanking me for what I am doing on social media. And this is the beauty of this story.

“All the medals that I am winning will be donated. APM has one, my neurologist has another one. They will all go to a place where they will have a meaning, and where they will be helping people to make them understand life and not stop after the diagnosis.”

What message do you have for anyone reading this who has Parkinson’s, who is interested in trying rock-climbing for the first time?

“Go for it! Try it! Do not be scared. There is a climbing gym in the USA where only people with Parkinson’s go, and they even have people starting to climb at the age of 90. There are a lot of studies that are saying how good this sport is for us! So try to go to a climbing gym, and if you need help, contact me.”

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Prepare the perfect festive dinner with Parki’s chef Yves Meersman

09 July 2025 By Yves Meersman
Advice ChristmasRecipes & Nutrition

For many enthusiastic cooks the festive season is a great opportunity to show off their skills. But if one of your guests has Parkinson’s disease, you may wonder: how can I prepare a dinner that everybody will enjoy? Here, Yves Meersman, the chef with Parkinson’s behind the Parki’s Kookatelier cooking project, shares his expert tips for a ‘mise en place’ that will help you create the complete festive dinner

As a host you dream of enjoying the delicious meal you prepared with so much love and passion in a festive ambiance with your family. But the reality can be different, as too often you find yourself busy in the kitchen – at best you see your guests between the two courses. That’s not the idea!

That’s why I present to you a festive meal with ingredients you can prepare the day before, or ‘pre-cook’ before the guests arrive on the day itself, leaving you only with the finishing touches to add to the festive meal.

Tip: You can adapt dishes to accommodate the chewing and/or swallowing problems of guests by blending or mashing ingredients

These 12 mise en place rules can be applied to any menu

  1. Order all ingredients and products well in advance.
  2. Make sure you have enough storage space in the fridge to keep all part-prepared dishes cool.
  3. Pre-cook fish or meat until half done, cooking the rest during the re-heating stage.
  4. Parboil all vegetables in advance, cool well under running tap water, drain, pat dry and put in a dish lined with butter. Season the parboiled vegetables just before reheating.
  5. Potato gratin can be pre-cooked in the oven until almost done. Put the pre-cooked dish – after cooling – in the fridge. Take out one hour before reheating the gratin.
  6. Pre-cook rice and dough products until almost done, cool immediately and reheat for one minute in a hot, well-spiced stock; or toss in slightly heated farm butter or olive oil, just before serving.
  7. Cold sauces such as cocktail sauce, tartar or vinaigrette are best prepared the day before to enhance the flavour – store in the fridge. Take out of the fridge about 30 minutes before serving to bring it room temperature – again, this will enhance the flavour.
  8. Prepare sauces the day before without the trimmings. Warm the pre-cooked or sautéed trimmings and add to the warm base sauce just before serving.
  9. Season all warm preparations such as sauces and soups, with a taste booster just before serving.
  10. Pre-heat the oven to 180-200°C, but turn down to 140-150°C when reheating as this will improve the cooking process.
  11. Cut pre-cooked meat into smaller portions after reheating.
  12. Take the temperature of the meat or fish as many times as possible with a thermometer to make sure that it’s fully cooked.

Parki’s Kookatelier is a Belgian project focusing on specialised nutrition for people with Parkinson’s disease. The authors are Yves Meersman and Randy Mellaerts.

For more information, visit their website here.

See our collection of recipes for living well with Parkinson’s 

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Study finds further links between impulse control disorder and dopamine agonist medication

Scientists have found evidence that some dopamine agonist medications can cause impulse control disorder in people with Parkinson’s
08 July 2025 By Verity Willcocks
Insights dopamine agonistsimpulse control disorderResearch

Even a low dose of a dopamine agonist medication could cause an impulse control disorder in some people with Parkinson’s, a Scandinavian multi-centre study, IPAPS (Impulse control disorder Parkinson Agonist Pharmacology Study) has found.

Over the past ten years, it has become clear that taking dopamine agonist medications can lead to some people with Parkinson’s developing an impulse control disorder. This is where a person develops extreme behaviours such as compulsive gambling, excessive spending, hypersexuality or binge-eating. This can have a detrimental impact on their lives and relationships with others, as well as have potential financial or legal implications.

Impulse control and dopamine agonist study

Until now, it has been assumed that impulse control problems are related to the dosage size of a dopamine agonist medication. However, the study’s research into two dopamine agonist medications now partly rejects this. As a result, in Norway levodopa is now the recommended first-choice treatment for Parkinson’s symptoms.

Conducted at four sites in Norway and one in Sweden, the clinical and pharmacological study set out to find out more about the mechanisms behind impaired impulse control, and the role of dopamine agonist medications in this.

Starting as a collaboration between the University of Oslo and The Arctic University of Norway in Tromsø, IPAPS recruited 100 people with Parkinson’s who took regular doses of the dopamine agonist medications pramipexole or ropinirole.

The participants were interviewed, examined, and filled in different rating scales for impulse control and other problems related to Parkinson’s.

Blood was drawn for pharmacological analyses three times in one day – just before the daily dopamine agonist dose, and after six and twelve hours – allowing for accurate measurements of dopamine agonist serum concentrations throughout the day. Degrees of impaired impulse control were correlated to dopamine agonist use and serum concentrations.

New findings for pramipexole and ropinirole

Initial results based on a fraction of the study cohort were published by the European Journal of Neurology last year. More exhaustive findings based on all 100 study participants were published in a separate article by the European Journal of Neurology in January this year.

In the case of pramipexole, no correlations between impaired impulse control and pramipexole dose or serum concentrations were found – meaning that even a low dose of it could lead to some people with Parkinson’s developing an impulse control disorder. This finding led the study’s scientists to advise that those who show signs of an impulse control disorder while on pramipexole should stop taking it.*

As regards ropinirole, both daily dose and total drug exposure (serum concentrations throughout the day) showed a weak but significant correlation with impaired impulse control. These results suggest that ropinirole users experiencing problems with impulse control could benefit from reducing their dose.*

Changes to recommendations in Norway

Dr Espen Dietrichs, a neurologist/movement disorder specialist and professor at the Institute for Clinical Medicine at the University of Oslo and one of the study’s senior authors, says: “Taken together, our results seem to imply that pramipexole treatment should be stopped in people with Parkinson’s that develop impaired impulse control, as these problems are not related to dopamine agonist dose or serum concentrations.

“In ropinirole users having similar problems, a dose reduction may be beneficial and could be tried out as both ropinirole dose and serum concentrations seem to have some importance.”

The study’s insights into the risks of impulse control disorders when taking dopamine agonist medication have changed the recommendations for treating Parkinson’s symptoms in Norway.

Whereas previously, dopamine agonist medications and levodopa treatment were considered equal alternatives when starting treatment for those newly diagnosed with Parkinson’s, now five Norwegian Parkinson’s experts have recommended levodopa alone as the first choice for treating the condition’s symptoms.

*Please consult your neurologist before halting or reducing any Parkinson’s medications.

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Meet Parkinson’s Europe’s Visibility and Awareness Steering Group

Meet the team who will drive our work to raise the profile and understanding of Parkinson’s across Europe
04 July 2025 By Christy McGhee
Insights raising awarenessstrategy

People with Parkinson’s and experts from across Europe are coming together to form Parkinson’s Europe’s new Visibility and Awareness Steering Group.

The group has been established to guide and support Parkinson’s Europe’s strategy, focusing on its third strategic pillar.

The group will hold its second bi-monthly meeting this month. The work is being co-ordinated by Parkinson’s Europe’s Director of Communications Laura Vickers-Green, Strategic Director Amelia Hursey and Head of Content Christy McGhee.

Raising the profile of Parkinson’s as the fastest-growing neurological disorder will be one of the key strategic aims the group will support.

It will also seek to guide Parkinson’s Europe’s work to increase awareness and understanding of the real life impact of Parkinson’s.

Meet Parkinson’s Europe’s new Visibility and Awareness Steering Group members:

Cathy Molohan is an Irishwoman living in Frankfurt, Germany. She is mum to two (almost) grown up kids, and a passionate patient advocate.

Cathy Molohan is a passionate patient advocate.

“I am living a great life despite Parkinson’s and doing everything in my power to keep it that way. Together we are strong, and loud, and powerful.”

Retired college tutor David Sangster is British, and was diagnosed with Parkinson’s in 2011, at just 29 years old.

David Sangster: raising awareness of Parkinson's

“Statistically speaking, I was too young to be diagnosed with Parkinson’s back then. Now, in my early forties, I am still too young. I have been through so much with this condition. It doesn’t get any easier, that’s for certain. But you can still find living space within its diminishing parameters – if you have a positive mindset. But some days Parkinson’s wins. It completely violates every part of me. I lose control. To be honest, nothing can prevent the complex aspects of this multi-faceted condition showing itself at the most inconvenient times. This is real. All I want to do is to be me. Be still and to contribute to society the best I can.

“There is still so much to be done to raise awareness of Parkinson’s, to educate society and medical professionals. About the range of symptoms that we face on a daily basis and come to increasingly manifest over the course of the condition. How does Parkinson’s really feel? And what does it actually look like? How does it limit me, and the many others around the world, physically, mentally and emotionally?”

Emma O’Shea is a researcher and lecturer at the Centre for Gerontology and Rehabilitation at University College Cork, in the South of Ireland.

Researcher Emma O’Shea

“I am passionate about creating impact with research findings, and am currently the Chair of the ‘Research and Impact’ subcommittee of Parkinson’s Ireland. Our research group has led a national programme of research over the past five years. This has shown that the symptoms and experiences of Parkinson’s are not always well understood by society. This has knock-on effects, including stigma and under-provision of specialist services and support for people and families living with Parkinson’s.”

Lisa Wynne is a Parkinson’s nurse specialist with over ten years of Parkinson’s experience, having trained in adult and pediatric nursing prior to this.

Parkinson's nurse specialist Lisa Wynne

“I currently work with the Irish national charity, based in Dublin, supporting people living with Parkinson’s and their families. I am very interested in this steering group to help raise awareness on a European level, spreading the same message and working together for greater impact.”

Paqui Ruiz was born and lives in Tenerife, Canary Islands.

Activist Paqui Ruiz

“I am a Spanish woman with early-onset Parkinson’s for more than twelve years, married and with four children. After six years of struggling to maintain my creative and positive identity, I decided to publish a blog “Con P de Párkinson”. A space where Spanish-speaking women with Parkinson’s can find support and visibility.

“My diagnosis came after a long process of medical confusion. Today, thanks to the people who have supported me, I have found true friends. I continue to value each day as an opportunity to live fully and share my experience with others.

“I am an activist and ambassador for the Degén Foundation. Thanks to the WPC I discovered that activism goes beyond my street, my province and my country. Parkinson’s is not only a health problem, it also involves society and the policies of countries and the European Union.

Pawel Kaczmarek is from Poznań, Poland, and has been living with the challenges of advanced Young Onset Parkinson’s for over a decade.

Pawel Kaczmarek: AI focus

“While I work supporting researchers professionally, my personal drive is focused on turning my own experiences into opportunities for connection and innovation within the Parkinson’s community.

“I am eager to join forces with fellow enthusiasts to challenge perceptions, improve awareness, and help give Parkinson’s a stronger voice. Especially focusing on how to leverage technology and AI to empower people with Parkinson’s to stay at or return to work. Not only as a means of preventive therapy, but also as a way to bring value to their loved ones, societies and economies.”

Pedro Maria is based in Lisbon, Portugal, and works for Portuguese pharmaceutical company BIAL. He is also father to a seven-year-old daughter, and has more than 20 years of experience in the pharmaceutical industry.

Pedro Maris has has more than 20 years of experience in the pharmaceutical industry

“Since 2021, I have been working in the Parkinson’s space at BIAL as a Senior Global Marketing Manager. My focus is on delivering effective solutions that empower people with Parkinson’s to self-manage their OFF episodes.

“I strongly believe that European people with Parkinson’s deserve a stronger voice to ensure better access to Parkinson’s education, support, and treatment.”

Wendy Van Wijk lives in the Netherlands and was diagnosed with Parkinson’s in 2017 at the age of 47.

Writer Wendy Van Wijk aims to inspire others

“Despite everything, I maintain a positive outlook on life. Through my magazine, Wendy’s Parkinson Journey, I aim to inspire others. Not only by sharing my own story but also by highlighting the powerful and hopeful stories of fellow patients.

“Working together, we can expand our reach, strengthen our voice, and stand as one united community to make a difference.”

Antonella Macerollo, Consultant Neurologist at the Walton Centre in Liverpool, UK, and Honorary associate professor at University of Liverpool.

Antonella Macerollo, Consultant Neurologist at the Walton Centre in Liverpool, UK, and Honorary associate professor at University of Liverpool

“I have worked in the field of movement disorders and especially Parkinson’s since 2007, when I was in medical school. I am passionate about working with charities dedicated to people living with neurological conditions. They are the real voice, and I would like to contribute to make ‘louder’ this voice.
“I am trustee of the Dystonia UK and Regional Lead of the Parkinson’s Excellence Network of the North West Region in the UK. I am delighted to join this group because I feel the need to contribute in increasing visibility and awareness of this condition in Europe. Especially in relation to non-motor symptoms and neuromodulation therapies.”

Meet our new Empowerment Steering Group, and Data and Innovation Steering Group.

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Ultraprocessed foods (UPF) linked to increased risk of Parkinson’s – but more research needed

01 July 2025 By Christy McGhee
News Recipes & NutritionResearchUltraprocessed Foods

Eating ultraprocessed foods (UPF) such as ketchup and soda has been linked to increased risk of developing Parkinson’s, according to new research published by the American Academy of Neurology’s medical journal.

UPF consumption significantly increases the risk of developing prodromal (early signs) of Parkinson’s, suggests the ‘Long-Term Consumption of Ultraprocessed Foods and Prodromal Features of Parkinson Disease’ study, published in Neurology.

The report used data from two US studies to explore the link between consuming higher amounts of ultraprocessed foods like potato chips, and early Parkinson’s-related nonmotor symptoms such as constipation and body pain. It was based on more than 42,800 participants, with a follow-up period of up to 26 years.

Participants consuming approximately 11 servings of UPFs per day had a 2.5-fold higher likelihood of exhibiting three or more prodromal Parkinson’s features. This was compared with those who consumed only three servings per day, the study showed.

The research indicates more studies are needed to confirm whether lowering UPF consumption may prevent the occurrence of nonmotor symptoms that often precede a diagnosis of Parkinson’s, the article says.

Dr Katherine Fletcher, Research Lead at Parkinson’s UK, agreed that although the study was long-running and included a large sample size, more research was needed.

“Research into diet in general is difficult as people often will inaccurately self-report what their diet comprises. This could be down to forgetting to fill in the diary at the time, to subjective interpretation of amounts of UPFs,” Dr Fletcher said.

“The study group also lacked ethnic and socio-economic diversity, which is vital when looking to better understand factors that contribute to the causes of a health condition.”

What are Ultraprocessed Foods (UPFs)?

While definitions can vary, the term Ultraprocessed Foods (UPFs) is generally used to describe products which have been created by using a number of industrial stages. According to the NOVA classification system, UPFs are ‘formulations of ingredients, mostly of exclusive industrial use, typically created by series of industrial techniques and processes (hence ‘ultra-processed’)’.

Common ultra-processed food and drinks products include:

  • Carbonated soft drinks
  • Sweet, fatty or salty packaged snacks
  • Confectionery
  • Mass produced packaged baked goods such as breads, cookies and cakes
  • Margarine and other spreads
  • Sweetened breakfast cereals and fruit yoghurt and ‘energy’ drinks
  • Pre-prepared meat, cheese, pasta and pizza dishes
  • Poultry and fish ‘nuggets’ and ‘sticks’
  • Reconstituted meat products; such as sausages, burgers, hot dogs
  • Packaged ‘instant’ soups, noodles and desserts

Eating well with Parkinson’s

While there is no specific diet recommended for people with Parkinson’s, having a well-balanced, healthy diet is strongly recommended. Eating well can help manage Parkinson’s symptoms like constipation, fatigue, dyskinesia (involuntary movements) and stress.

Find out more about eating well as a person with Parkinson’s.

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Parkinson’s UK LGBTQIA+ Network: a safe space to connect

Parkinson’s Life spoke to Parkinson's UK online LGBTQIA+ network co-founder Chris Rawlins, about why the group is so important, and how it might evolve in the future
27 June 2025 By Christy McGhee
Stories CommunityDiversity and Parkinson'sLGBT+UK
Parkinson's UK LGBTQIA+ Network is run by volunteers (l-r): Chris, Paul and John

Living with Parkinson’s can come with its own particular set of challenges. As can being part of the LGBTQIA+ community. So what do you do when both apply to you? For person with Parkinson’s Chris Rawlins, the answer was clear. There was a need for a Parkinson’s LGBTQIA+ network.

Seeking a space where people could both be fully themselves without fear of prejudice, and connect over shared experiences, he teamed up with two other volunteers to establish Parkinson’s UK’s dedicated LGBTQIA+ network. The group held its first regular meeting in August 2023, and since has grown to a network of 30 members.

“I have never met (co-founders) John, based in the northeast and Paul, Bristol, in person,” says Chris. “But we got together as we were all members of the LGBTQIA+ community, who had been diagnosed with Parkinson’s, trying to find a way to meet up with people in a similar situation.”

The trio quickly realised there would be too few members to warrant local gatherings in person. So instead, they decided to set up UK-wide online meetings.

“We started off meeting every two months, but it is now monthly,” Chris says. The meetings alternate between a relaxed social gathering, and a more formal meeting with speakers.

While the group is run by volunteers, Parkinson’s UK provides “fantastic” support. This has included providing free access to Zoom subscription services to help easily hold the meetings online. In fact, recent speakers have included Parkinson’s UK CEO Caroline Rassell, as well as speakers from external organisations.

There are plans to expand the range of speakers even further. “We are keen to split the mix of speakers 50-50 going forward, for example there is scope to talk to people at [UK LGBTQ+ charity] Stonewall, for example,” Chris says. “Because there are specific issues LGBT+ people with Parkinson’s face that others don’t. So we need to start engaging with more LGBT+ organisations too.”

Connecting the Parkinson’s LGBTQIA+ community

Since its first meet-up, the group has grown not only in size but in confidence. For the first few meetings, “We were all a bit nervous, both the co-ordinators and those attending,” says Chris. “It takes a while to build trust and confidence, so our first meetings were about building that. We make it very clear that what is discussed in the room stays in the room. We have some really good friendships developing. It is a safe space.”

That is not to say connecting with current members, and attracting new ones, is straightforward. With members spread across the UK, and the fact Parkinson’s can make travel difficult for many, the group is limited to meeting virtually for now.

“It is much easier to shake hands, look someone in the eye and offer them a cup of tea in person,” Chris says. “Online it is more challenging. We have to think more creatively about what the ice breaker should be, to enable everyone to speak and settle the nerves.”

Expanding the network

Over the past two years, the group has grown by word of mouth. Along with support from Parkinson’s UK who added details of the group to their website, and encouraged local group co-ordinators to share it with their members.

“But there may be people in the community who are diagnosed with Parkinson’s who don’t know about Parkinson’s UK at all. Or that they have anything for LGBT+ people,” says Chris. Building up relationships with other organisations and media, such as Stonewall, could help raise awareness of the network, he says. “I would be really interested in finding out whether other groups like ours exist in different parts of Europe. In linking up with them to learn from each other and swap ideas.”

Wider outreach is important to make sure everyone is aware of and feels welcomed into the network, he adds. While the UK spread and age range is diverse, membership is currently made up mainly of white, gay men. So there are plans to connect with more people with Parkinson’s from other demographics.

“There is a whole piece of work about going out to other organisations to think about how we engage people nationally. As well as LGBT+ bodies, we need to speak to representatives from different communities.”

Uniting over shared experiences

Connecting with other people sharing similar experiences is a core part of the group’s purpose. Studies have shown that LGBTQIA+ people tend to face specific challenges, for a number of reasons. Chris references a recent report focusing on the LGBT+ community aged 50-plus in London. It highlights the increased hardships and discrimination faced by this demographic, along with social isolation, long-term health conditions, and financial stress.

“There are issues for LGBT people, and having Parkinson’s adds another layer of complexity.” Chris says.

“The feedback we have had is that people are just thrilled and delighted that the group exists. Because they know that there is a readily accessible group of people going through issues similar to them that they can talk to. Where they can just be themselves.”

Recalling his own experience of not feeling comfortable enough to mention his husband at a local Parkinson’s group, Chris explains members of the network appreciate knowing “they do not have to hide anything, or ask themselves the question ‘what happens if I come out in this meeting? Will I be accepted?’ So by having a specific group, I think it just provides that safe space to people.”

LGBTQIA+ advocacy for people with Parkinson’s

While the network has primarily served to connect LGBTQIA+ people with Parkinson’s socially, there is scope for advocacy in future, Chris says. The network works closely with the team within Parkinson’s UK that organises the charity’s attendance at London Pride, for example. However, despite the benefits of meeting up in person at such an event, logistical challenges prevent many members from attending. In addition to travelling to London, taking part often involves waiting around for long periods of time and limited access to toilet facilities.

“There are simple things that Pride could do, such as allowing disability charities to go first in the march, so they do not have to wait at the beginning,” Chris explains. “Now we have found our feet, it is time to start thinking about campaigning and advocacy.”

Improving support for the LGBTQIA+ Parkinson’s community in general can be as simple as avoiding assumptions, Chris says. “It goes back to basics. It is about language. When I first went to see a Parkinson’s nurse one of the first questions was ‘Is your wife supportive?’.  Because I had said I was married.”

As a gay man with a husband, phrasing the question to use spouse or partner might have made the exchange easier, he says. “So across the health service generally, there is a requirement for training people in how to use language correctly.”

Accessing support both at home, or in a care home, can also be a daunting prospect, he adds. “I’m in my sixties and I don’t know whether I will have to go into a social care setting at some point. But there are lots of stories, both anecdotal and in print, of where LGBT people have faced huge discrimination from staff within nursing homes. It would be tragic if people felt they had to go back into the closet in order to feel safe in a care home.

“Part of our advocacy has to be thinking about the issues LGBT people generally face in nursing home settings. And how they can be protected to make sure this sort of thing doesn’t happen.”

Chris’ advice for other Parkinson’s organisations (or individuals) across Europe who would be interested in setting up a similar network:

  • Take action: “My best pointer is to just get started. And the best time to do it is now. You will not get everything right to start off with, but by doing something and seeing what could be better, you end up in a better place.”
  • Connect: “As part of getting started, get in touch with others who have been in the same situation. I am happy to share our experience with you. It’s so easy in this type of work to get ‘analysis-paralysis’, so just get started!”
  • Be relevant: “Part of the challenge of having an online group is motivating people to attend. That’s why we try to find interesting speakers who can actually say something that will add value to people’s lives and be relevant to them.”
  • Share the work: “At first three people felt a bit much, but now preparing for a social Saturday meeting can take three-four hours to set up. Setting up and preparing for speaker meetings also takes a bit of time. So if we start to do more advocacy, we will need to split the work in 3 different spheres.”

Interested in finding out more about Parkinson UK’s online LGBTQIA+ network? Or in exchanging ideas about setting up your own? You can contact Chris on [email protected].

 

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‘Representation is improving, but many of us still feel unseen’: healthtech innovator Shan Havins on visibility, and building a more equitable future

25 June 2025 By Christy McGhee
Stories AIDiversity and Parkinson'sLGBT+Young-onset Parkinson's

Parkinson’s Life speaks to Shan Havins, 38, young person with Parkinson’s and founder of healthtech startup Thrive Well Together (TWT). Shan lives in Idaho Falls, Idaho, USA, with her wife and their four-year-old son.

Shan, please tell us a bit about yourself

“I am the founder of Thrive Well Together (TWT), a healthtech startup creating AI-powered conversational care companions for people living with chronic illnesses. My background is a blend of nursing, higher education, national lab research, and technology innovation. More than any title I have held, I am someone who believes in the power of empathy, connection, and community to change lives.”

How did you come to be diagnosed with Parkinson’s?

“I was diagnosed with young-onset Parkinson’s in my late thirties, after years of unexplained symptoms. These ranged from digestive issues and dystonia, to balance problems and a tremor in my left pinky (little finger).

“I had been seeking answers for a long time, and when I finally received a Parkinson’s diagnosis, it was both validating and life-altering. I went from leading a 70-person team in a high-stakes research role, competing in powerlifting and strongman events, and chasing every professional milestone imaginable, to being stopped in my tracks.

“Parkinson’s forced me to slow down, sit with grief, and reevaluate who I really am outside of what I accomplish. It also invited me into a journey of healing and connection that I never expected.”

What has connecting with the Parkinson’s community meant to you?

“The Parkinson’s community quite literally saved me. I initially connected through online groups and social media, and then through organisations like the Davis Phinney Foundation and Young Onset Parkinson’s Network.

“What I found was a deeply generous, resilient community that shares knowledge, vulnerability, and joy. For my family and me, this connection has made the difference between surviving and truly living with Parkinson’s. It is a lifeline.”

What changes would you like to see in the way Parkinson’s is represented and understood?

“As a queer woman with young-onset Parkinson’s and a toddler at home, I often feel like an outlier in the public image of what Parkinson’s looks like. Representation is improving, but many of us still feel unseen in clinical spaces, public campaigns, and support resources.

“The assumption is often that Parkinson’s is a disease of older straight white men, and while they matter too, it is important that the full spectrum of experience is visible.

Shan Havins, young person with Parkinson’s

“I would love to see broader, more inclusive narratives, and healthcare systems that recognise how factors like gender identity, caregiving status, and disability intersect to shape how we access care. I have had to fight for culturally competent, responsive care, and I know I am not alone in that.”

Please tell us more about TWT. What does it offer people with Parkinson’s and their loved ones?

“TWT was born from a simple truth: getting diagnosed is only the beginning. Navigating chronic illness, especially one as complex and isolating as Parkinson’s, requires more than just clinical care. It requires connection, information, and support between appointments, especially for those who are newly diagnosed or do not yet have a care team they trust. I created TWT to fill that gap.

“Our work centres people living with illness, not just their symptoms. We are also heavily focused on supporting their caregivers and family members. No one who is impacted by chronic illness should be left to carry it alone.”

TWT’s AskShan tool is an AI-powered online chat companion, designed to offer advice and support. What inspired you to develop this?

“AskShan was born from my lived experience. I needed something that could talk to me at 2am when I was panicking. Something that could help me sift through the noise and figure out what questions to ask my neurologist. I took everything I learned the hard way after my diagnosis, and built a tool I wished I had from the beginning. AskShan is an AI-powered conversational support companion modeled after my own experience with Parkinson’s.”

Tell us how AskShan works. Is it designed to work in place of, or alongside traditional care?

“It offers practical advice, emotional support, and resource referrals in a way that is deeply human and easy to access. It is also multilingual. We are consistently working toward improving its cross-cultural accuracy, so that it can support as many people as possible, anywhere in the world.

“We intentionally designed AskShan to complement, not replace, traditional care. It’s meant to be there at 2AM when you are feeling most alone. When you have a question you are afraid to ask. Or when you are overwhelmed and you don’t know what to do next. It is designed to walk with you between appointments, not be used in their place.

“We will always offer AskShan free to the public, so that no one goes without support due to an inability to pay for it. We will also soon be releasing a paid version of AskShan. This version will remember previous interactions, can make proactive recommendations, and give users the ability to have text message conversations with the tool.”

How do you hope to develop TWT in the future?

“The vision for TWT is bigger than AskShan. We are building a whole portfolio of AI companions to support people across many chronic conditions, and virtual research assistants that help patients and scientists alike.

“We want to bring this level of personalised, empathetic, intelligent support to everyone, regardless of geography, income, or diagnosis. I believe we can help shape a future where care is more equitable, more human, and more responsive to real life. And we are working to ensure that future is already on its way.”

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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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