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ParKLIMson founder Ton van den Berg: “My ambition is a Parkinson’s group in every climbing gym in the Netherlands”

Person with Parkinson's and creator of the Netherlands Parkinson’s climbing organisation on why climbing is perfect for people with Parkinson’s
09 February 2026 By Verity Willcocks
Stories

A Parkinson’s diagnosis has not diminished Ton van den Berg’s passion for climbing, sparked when he was a university student in 1988. Now 57, the Dutchman wants to share his love of the sport with other people with Parkinson’s. Through his organisation parKLIMson, which he founded last year, he is setting up a network of regular Parkinson’s climbing sessions at climbing gyms across the Netherlands.

A father of two grown-up children, he lives with his girlfriend and their dog in Helmond in the Netherlands. Here, he discusses his passion for climbing with Parkinson’s Life and talks about the benefits people with Parkinson’s can reap from practising the sport, regardless of their age or stage with the condition.

Climbing: a lifelong passion

Ton discovered climbing when he attended an introductory session of Eindhoven Student Alpine Club (ESAC), a climbing and mountaineering group at Eindhoven University of Technology.

“Back then there was no climbing gym, so with ESAC we drove to Belgium or Germany every weekend, and in the holidays we went to the south of France or the Alps. We hitchhiked a lot as that was cheap.

“Climbing is a real passion. It was the first thing I was really good at, and it gave me confidence. I loved being outdoors and going to special places to hang out and climb some rock. I love sports and am fanatical about training. At one time, I climbed five or six times a week for two to three hours. At the weekends and on holidays, I went climbing outdoors. It was more a way of life than a hobby.”

Ton became so skilled at climbing that he competed at a high level. “I reached the finals of the Dutch championships several times,” he says.

When he developed a career, his passion for climbing did not abate. “I became a project manager for software projects at Philips. Most of my working life I was involved in software projects, teams and, later on, commercial aspects, too.”

He would often squeeze in climbing adventures when travelling overseas for work. This has seen him go climbing near Las Vegas and in Hampi, India, and boulder in Mitake, Japan.

When he and his girlfriend started a family – they have a son and a daughter, who also have the climbing bug – he still went climbing but reduced it to two or three times a week.

Climbing with Parkinson’s

As he grew older, Ton began to notice physical and mental changes but couldn’t work out why.

“My main physical symptoms are stiffness, fatigue and poor motor skills. There are cognitive problems too, like memory and worsened multitasking.”

His climbing was affected: “The first thing I noticed was less strength in my left hand. Stiffness does not help and impaired motor skills make my climbing moves less precise. All in all, my climbing grade plummeted. Also, I did not recover from shoulder and elbow injuries as quickly as I used to – maybe because I am older, but maybe because of Parkinson’s.

“Also, the movement in my climbing is not as fluid as it used to be – my moves are slow.”

Ton in Fontainebleau

Running and trail running are still part of his exercise regime. “I used to run 10k or a half marathon easily. Now I just manage 4 or 5k at a slowish pace. A friend told me, when she saw me running, that I ran like a great runner but in slow motion. That is exactly how my running and climbing now feels…”

Ton went to the doctor about his symptoms and was diagnosed with Parkinson’s around seven years ago. Despite this, he was determined to continue climbing. “I need longer to recover between climbing sessions, so twice a week seems the maximum now. I switched from bouldering to sport climbing because bouldering is much more intensive,” he says.

He still goes on climbing trips abroad. “In January this year, I went bouldering with my son in Fontainebleau, France, and in late January, I went with a friend to Leonidio in Greece. Last year, I was in the Peak District in the UK with my family, as both my daughter, Merel, and my son, Pepijn, climb. Climbing, for me, is an outdoor sport. I still love to go climbing outdoors.”

Setting up parKLIMson

In January 2025, his Parkinson’s meant Ton had to take leave from work. But rather than rest, he got busy.

After chatting with a sports doctor about research that showed the benefits climbing has for people with Parkinson’s, Ton read a study which found that a group of 48 people with Parkinson’s who undertook a 12-week climbing course recorded an improvement in their symptoms.

He then came across Molly Donelan-Cupka, who in 2012 founded Up Ending Parkinson’s, a network of more than 70 climbing groups for people with Parkinson’s in the US. After a conference call with Donelan-Cupka, Ton decided that he wanted to follow in her footsteps by setting up climbing groups for people with Parkinson’s in the Netherlands. “She inspired me,” he says.

Ton turned to his longtime close friend, Leo Broekmans, who he met in 1988 at the ESAC introductory session. “We had – and still have – some adventures when climbing together,” says Ton. Leo now runs a network of climbing gyms across the Netherlands.

“I asked Leo to support starting a climbing group for people with Parkinson’s,” says Ton. Together they founded parKLIMson, a not-for-profit organisation that runs sessions for people with Parkinson’s in climbing gyms.

Setting up parKLIMson forced Ton to face his diagnosis. After telling close family and friends, he said he had “‘put it in a box’ and tried to continue as if nothing happened”.

But once he decided to found parKLIMson, something changed. “As I was leading the initiative, I decided to tell everyone who asked that I have Parkinson’s. I just flipped the switch.”

In early 2025, Ton and Leo entered parKLIMson into a competition run by Parkinson Nederland, which raises money for Parkinson’s research and education in the Netherlands. It was offering grants for the three best initiatives that would improve the daily lives of people with the condition.

parKLIMson was one of three winning entries to secure 15,000 euros, which will help finance its expansion in the coming year.

parKLIMson makes progress

Ton and Leo are already making fantastic progress. In August 2025, they started a pilot Parkinson’s climbing group in Eindhoven, which now has about eight members. In November 2025, they started a Parkinson’s climbing group in Nijmegen, and ran an introduction to climbing event in Tilburg for people with Parkinson’s, as well as for Parkinson’s healthcare professionals. There, Spanish paraclimbing champion Jordi Cruz Gomez, who has the condition, gave a talk about climbing and his journey with Parkinson’s.

Ton belaying Jordi Cruz in Tilburg

Currently, there are six parKLIMson locations in Eindhoven, Nijmegen, Tilburg, Utrecht, Amsterdam and Zwolle, with the latter three opening just this year.

Ton admits, however, that it can be difficult to find people with Parkinson’s who want to take part. “It’s not because they do not like climbing, but because climbing is relatively unknown, and climbing with Parkinson’s is even less known about,” he says. “Climbing has the image of being unsafe and only for adrenalin junkies and that you have to be fit and strong. But with the climbing groups, we prove the opposite!”

Climbing with parKLIMson

parKLIMson’s climbing groups are open to people of all ages and at all stages of the disease. When walking becomes more difficult or strength is diminishing, climbing can improve fitness, strength and balance, says Ton.

At the two-hour sessions, which start with a warm-up (conducted while sitting or standing), participants learn basic climbing technique with an instructor at a ratio of one-to-one or one-to-two. Because you’re attached to a rope, there’s no risk of falling and injuring yourself.

“Everyone can train at his/her own level,” says Ton. There are plenty of rest breaks, including a coffee break halfway through, where participants can chat with others.

parKLIMson climbers

Pascal has joined the parKLIMson sessions in Eindhoven. In his fifties, he has been diagnosed with Parkinson’s and is now very active. He had never climbed before, but it seemed like a great addition to his running training and that it might be more fun than regular fitness classes: “I read an article about climbing with Parkinson’s in the Eindhovens Dagblad newspaper and signed up for an introductory class,” he says. “Climbing seemed fun and challenging. Research has shown that it helps combat Parkinson’s symptoms, so that’s great. This way, I can exercise with others who have Parkinson’s, and their condition is taken into account.”

Discussing what climbing can do for people with Parkinson’s, he says: “You make movements you wouldn’t normally make so easily. It’s also good training for your balance. They carefully consider your level of ability. The instructor tailors this completely to my needs. The advantage of climbing is that all kinds of people at different levels can climb simultaneously.”

Leopold, a 77-year-old with Parkinson’s who also attends the Eindhoven parKLIMson classes, adds: “They take your needs into account, and there are many volunteers to guide us. That’s something I really appreciate; thanks to them, climbing is possible for us.”

Jos, 71, read the same article as Pascal and decided to sign up for climbing sessions in Eindhoven immediately. Unlike the others, he had climbed before. “I stopped climbing partly because of Parkinson’s, but now I’ve started climbing again because of Parkinson’s. I thought it would be fun to climb again, especially knowing that it’s good therapy for me and many others with Parkinson’s.”

Pascal also finds the social aspect important. “This way, I connect with other people with Parkinson’s and can share experiences. It’s also a great atmosphere before or after the class.”

Jos agrees: “I thought it would be nice to climb with other people with Parkinson’s. I hope to find climbing buddies here so we can climb outside on Friday mornings.”

Pascal says of his new hobby: “When climbing, you don’t have time to think about anything else but climbing. After two hours of climbing, I feel like I can take on the world! Climbing is fantastic.”

Future plans

As for the future, Ton plans to expand parKLIMson. “My ambition and main focus is to set up a Parkinson’s group in every climbing gym in the Netherlands,” he says.

He also intends to set up a platform where people with Parkinson’s who are interested in climbing can get in touch with volunteer climbing instructors to teach them. He also wants to invest in more research on climbing and Parkinson’s.

“The vision is to have a large group enjoying climbing, and through climbing slow down the progress of Parkinson’s,” he says.

Ton stresses the importance of people with the condition doing a physical activity and finding one they enjoy. “It really makes a difference in slowing the progress of Parkinson’s, so it is worthwhile. But if you do not like it, you will not keep doing it.

“Don’t hesitate to try climbing – it is safe, it trains the whole body and balance. And you also need to solve the puzzle of how to move from one hold to the next, so it trains the brain. It is a very safe sport – the way we execute it – and, above all, it is fun!”

Are you interested in giving climbing a go at a parKLIMson session? Find out more here

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Coconut chicken and vegetable stew recipe

04 February 2026 By Christy McGhee
Recipes Recipes & Nutrition
Pan-fried chicken and fragrant coconut milk is a classic combination, and this delicious coconut chicken and vegetable stew recipe packs in plenty of vegetables for flavour and nutrition.
This healthy stew is part of NutritionPD’s Mediterranean-focused collection – serve with a side of carbohydrates such as pasta, rice, potatoes, quinoa or another grain.
Servings: 2
Time: 35 minutes

Coconut chicken and vegetable stew recipe ingredients:

  • 1½ extra virgin olive oil chicken breast (boneless, skinless, cubed)
  • 2 zucchini (small, sliced)
  • 1 red bell pepper (medium, chopped)
  • 325ml lite coconut milk
  • Sea salt & black pepper (to taste)
  • 105g frozen spinach (thawed, drained, chopped)
  • 1/2 lime (medium, juiced)
Method
  1. Heat the oil in a pot over medium heat. Add the chicken, stir, and cook for 10 minutes or until lightly browned.
  2. Add the zucchini and bell pepper and cook for another five to seven minutes.
  3. Add the coconut milk, stir, and season with salt and pepper. Cover the pot with a lid and let it simmer on low heat for 10 minutes or until everything is cooked through.
  4. Remove the lid and add the spinach. Simmer for another minute, then remove from the heat and add the lime juice. Taste and adjust the seasoning as needed.
  5. Divide evenly between bowls and enjoy!
Culinary tips:
  • Leftovers? Refrigerate in an airtight container for up to three days.
  • One serving is approximately two cups.
  • For additional flavour, garnish with green onion.
This recipe was shared with Parkinson’s Life by NutritionPD founder Richelle Flanagan, a registered dietitian with young-onset Parkinson’s.
Read our full interview with NutritionPD Founder Richelle Flanagan to find out more about the Mediterranean Parkinson’s Programme.

Explore our collection of Parkinson’s-friendly recipes

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The Traitors UK winner Rachel Duffy praised for raising awareness of Parkinson’s on hit UK TV show

27 January 2026 By Christy McGhee
News CelebritiesYoung-onset Parkinson's
Credit - BBC/Studio Lambert/Paul Chappells

Parkinson’s Europe has praised The Traitors winner Rachel Duffy for raising awareness of Parkinson’s on the hit UK TV show, following news that the star’s mum, who lived with the condition, has died.

Speaking on the show, Rachel had expressed the desire to spend her share of the £95,750 prize pot – split with co-star and fellow ‘traitor’ Stephen Libby – on making memories with her family.

“I would like to do something for my mummy, who has been very ill for a long time,” a visibly emotional Rachel, who is from Newry in Northern Ireland, told fellow contestants.

“She was diagnosed with Parkinson’s when she was only 47, and I’ve watched her my whole adult life just put her whole life on hold for other people. She was diagnosed with dementia recently and all she wants to do is go on holiday. I think if I were to win the money, it would be to take her and my kids on holiday and make memories while she still has her memories.”

Sadly, however, just days after the show ended, Rachel’s mother Anne passed away. In a post shared on her Instagram stories, Rachel said: “We are heartbroken to share the passing of our beautiful wee mummy. We kindly ask for privacy as our family grieves during this difficult time.”

Raising awareness of young-onset Parkinson’s

With the show attracting huge viewing figures, including 9.6m for the season finale, Rachel speaking out about Parkinson’s has helped raise awareness of the condition.

Parkinson’s Europe’s Strategic Director Amelia Hursey praised Rachel for sharing her story and raising awareness of the condition.

Amelia said: “Rachel having the courage to open up on national TV and share that her mother, Anne, was diagnosed at a young age was an important moment for the Parkinson’s community.

“It not only helps raise awareness of the condition, but also reminds viewers that despite the common misconception that Parkinson’s only affects older men, it can affect people of all ages. We are sending Rachel and her family our condolences at this very sad time.”

The Traitors UK can be viewed on BBC iPlayer.

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Creamy one pan chicken, bell pepper and mushroom recipe

26 January 2026 By Christy McGhee
Recipes Recipes & Nutrition
Protein, nutrients and plenty of flavour – this delicious one-pan chicken, pepper and mushroom recipe combines autumnal flavours with a creamy sauce. Perfect for a cosy supper as the evenings become darker.
This healthy dish is part of NutritionPD’s Mediterranean-focused collection – for extra energy serve with a side of carbohydrates such as pasta, rice, potatoes, quinoa or another grain.

Creamy one pan chicken, bell pepper and mushroom recipe ingredients

  • 1½ teaspoons extra virgin olive oil
  • 285g chicken breast (boneless, skinless, cubed)
  • ½ white onion (small, diced)
  • 2 garlic (clove, minced)
  • 8 cremini mushrooms (quartered)
  • 1 red bell pepper (medium, sliced)
  • 160ml chicken broth, low sodium
  • Sea salt & black pepper (to taste)
  • 80g whipping cream
  • 2 tablespoons cilantro (chopped)
Method
  1. Heat the oil in a pan over medium heat. Add the chicken and cook for five to seven minutes or until lightly browned, stirring occasionally. Remove the chicken from the pan.
  2. In the same pan, add the onion and sauté for five minutes or until soft and lightly browned. Add the garlic and cook for another minute. Add the mushrooms and bell pepper, stir, and cook for two to three minutes.
  3. Return the chicken to the pan, add the broth, and season with salt and pepper. Reduce the heat to low, cover with a lid, and simmer for 15 to 20 minutes or until everything is fully cooked.
  4. Remove the lid and add the cream. Simmer uncovered for another five minutes or until the sauce has thickened slightly. Remove from the heat and add the cilantro. Divide evenly between bowls or plates and enjoy!
Culinary tips:
  • Any leftovers? Refrigerate in an airtight container for up to three days.
  • Serving size: One serving is approximately 1 1/3 cups.
  • For more flavour, add mustard and tarragon to the sauce.
  • For a dairy-free option, use coconut cream instead of whipping cream.
This recipe was shared with Parkinson’s Life by NutritionPD founder Richelle Flanagan, a registered dietitian with young-onset Parkinson’s.
Read our full interview with NutritionPD Founder Richelle Flanagan to find out more about the Mediterranean Parkinson’s Programme.

Explore our collection of Parkinson’s-friendly recipes

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Mung Bean and Eggplant Curry recipe 

22 January 2026 By Christy McGhee
Recipes Recipes & Nutrition
Rich in protein, fibre and antioxidants, mung beans make an excellent base for this veg-packed curry, shared by registered dietitian Richelle Flanagan.
This healthy curry recipe is part of NutritionPD’s Mediterranean-focused collection – serve with a side of carbohydrates such as rice, pasta, potatoes, quinoa or another grain.
Servings: 2
Time: 45 minutes

Mung Bean and Eggplant Curry recipe ingredients

  • 2 teaspoons extra virgin olive oil
  • ½ yellow onion (medium, diced)
  • 1 eggplant (medium, peeled, chopped)
  • 2 garlic (clove, minced)
  • 1 ½ teaspoons curry powder
  • 105g mung beans (dry, rinsed)
  • 360ml vegetable broth, low sodium
  • 365g diced tomatoes (from the can, with the juices)
  • Sea salt & black pepper (to taste)
  • 2 tablespoons cilantro (chopped)
Method
  1. Heat the oil in a pot over medium heat. Add the onion and sauté for five minutes, until soft and translucent. Add the eggplant and sauté for another five minutes until slightly browned.
  2. Add the garlic, curry powder, and mung beans and sauté for another minute. Add the broth and diced tomatoes. Stir to combine and season with salt and pepper.
  3. Cover the pot with a lid. Simmer on low heat for 25 to 30 minutes, or until the mung beans are cooked. Check occasionally and add more broth or a splash of water if needed.
  4. Divide the curry between bowls. Top with cilantro and enjoy!
Culinary tips
  • Any leftovers? Refrigerate in an airtight container for up to four days. Freeze for up to three months.
  • Serving size: one serving is approximately two cups.
  • For more flavour, add a spoonful of tomato paste.
This recipe was shared with Parkinson’s Life by NutritionPD founder Richelle Flanagan, a registered dietitian with young-onset Parkinson’s.
Read our full interview with NutritionPD Founder Richelle Flanagan to find out more about the Mediterranean Parkinson’s Programme.

Explore our collection of Parkinson’s-friendly recipes

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Saucy lentils and eggs recipe

19 January 2026 By Christy McGhee
Recipes Recipes & Nutrition

This delicious recipe using lentils and eggs is ideal for putting together a speedy supper when you are short of time or energy.

Part of NutritionPD’s Mediterranean-focused collection, it includes lentils for fibre while eggs provide a source of protein.

For added energy, serve with a side of carbohydrates such as pasta, rice, potatoes, quinoa or another grain.

Serves: 2 people
Time: 15 minutes

Saucy lentils and eggs recipe ingredients:

  • 200g Lentils (cooked)
  • 65g Tomato Purée
  • ½ teaspoon Cumin
  • Sea Salt & Black Pepper (to taste)
  • 2 Eggs
  • 1 tablespoon Parsley (chopped)

Method

  1. In a pan over medium heat. Add the lentils, tomato purée, and cumin. Season with salt and pepper. Bring to a simmer and cook for four to five minutes.
  2. Create one pocket for each egg amongst the lentils. Crack one egg into each pocket. Cover the pan and cook for about five to six minutes or until each egg is set.
  3. Top with parsley and enjoy!

CULINARY TIP

  • Any leftovers? Refrigerate in an airtight container for up to three days.
  • For more flavour, add bell pepper and top with feta cheese.
  • If the sauce becomes too dry as you’re cooking the eggs, add a few tablespoons of water at a time of water if desired

This recipe was shared with Parkinson’s Life by NutritionPD founder Richelle Flanagan, a registered dietitian with young-onset Parkinson’s.

Read our full interview with NutritionPD Founder Richelle Flanagan to find out more about the Mediterranean Parkinson’s Programme.

Explore our collection of Parkinson’s-friendly recipes

 

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10 of the best physio-approved videos for exercising with Parkinson’s

Physio-led exercise videos for people living with Parkinson’s, to build strength, range of movement, and mental focus
14 January 2026 By Christy McGhee
Advice exercisephysiotherapy

Regardless of the time of year, finding the right exercises for your body is always a good idea. Especially when you are living with Parkinson’s. Whatever fitness level you are starting from, building healthy habits to move your body can bring significant benefits for your body and mind.

Parkinson’s Europe’s YouTube channel offers a fantastic collection of exercise videos for people with Parkinson’s, including the Keep ON Moving playlist, devised by Parkinson’s Europe with company partner BIAL to help people with Parkinson’s work out at home.

You can also find ExerciseCast, a series of videos created by Parkinson’s Europe Board President and physiotherapist Josefa Domingos and speech and language therapist John M. Dean. This physiotherapy-focused playlist aims to help people with Parkinson’s exercise from the comfort of their own homes. And for those who are short on time, Helen Osbourne’s yoga for Parkinson’s video is just seven minutes long.

IMPORTANT
We strongly encourage you to consult a healthcare professional before beginning to exercise, to find out what is safe for you, and whether your medication is at the correct level to support your physical activity.

If you prefer to try some of the exercises without video, or using your own music, you can also try our Parkinson’s exercise audio files and worksheets. To ease in, you can see physiotherapist and Parkinson’s Europe President Josefa Domingos explaining the benefits of exercise or listen to our podcast before getting started.

Our round up of some of the best exercise videos for people with Parkinson’s

Physical Amplitude Work-Out

Duration: 8:42

This easy-to-follow workout with Josefa includes large amplitude moves and cognitive capacity.

Watch the exercise video

Arms and legs working and thinking together

Duration: 6:33

This session uses five simple movements to target large amplitude, rhythm, speed of response, selective attention and memory.

Watch the exercise video

Brain exercise

Duration: 7:38

Follow along as Josefa takes you through exercises to work your motor planning, focused attention, memory, and dual task capacity.

Watch the exercise video

Daily-life moves dance-like exercise

Duration: 5:44

A head-to-toe workout in less than six minutes, to help improve motor planning, focused attention, memory, and dual task capacity.

Watch the exercise video

Breath and voice exercise

Duration: 10:21

Take ten minutes to work on your voice production, focus, memory and posture.

Watch the exercise video

The ABC of sitting to standing

Duration: 13:26

Join Josefa to break down sitting and standing into step-by-step tasks, hleping you feel steadier when getting up and strengthening your limbs.

Watch the exercise video

Grasping for the word

Duration: 11:12

Work on your upper limb amplitude movement with these seated twisting and reaching exercises, while also improving voice and language production.

Watch the exercise video

Transition with the pillow

Duration: 10:20

A ten-minute session to help with sitting and standing, strengthen, and boost overall physical capacity.

Watch the exercise video

How to take the 1st step

Duration: 11:18

This session breaks down the sometimes challenging task of standing and taking a step, while improving focus, mental calculation, and strength.

Watch the exercise video

Moving chair to chair

Duration: 10:45

Grab three chairs and work on skills required to move from seat to seat, practising large amplitude lateral stepping, transitions in sitting and divided attention.

Watch the exercise video

Visit Parkinson’s Europe’s sports and exercise hub for more information and advice

 

 

 

 

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Tuna and red pesto spaghetti recipe 

12 January 2026 By Christy McGhee
Recipes Recipes & Nutrition
Looking for a hearty but easy-cook recipe packed with lean protein, wholesome carbohydrates and plenty of flavour? Try NutritionPD founder Richelle Flanagan’s tasty tuna and red pesto spaghetti recipe.
Combine your store cupboard staples to produce a delicious meal in just half an hour.
Servings: 2
Time: 30 minutes

Tuna and Red Pesto Spaghetti recipe ingredients:

  • 130g wholewheat spaghetti
  • 80ml water (reserved from cooking pasta)
  • 65g sun dried tomato pesto
  • 1 can tuna (drained)
  • Sea salt & black pepper (to taste)
  • ¼ lemon (medium, juiced)
  • 2 tablespoons parsley

Method

  1. Cook the pasta according to the package directions. Reserve some of the water, drain, and set aside.
  2. In the same pot, add the reserved pasta water and pesto. Whisk and place over medium heat.
  3. Add the tuna, spaghetti, and season with salt and pepper. Stir for one to two minutes until well combined and warmed through.
  4. Remove from the heat and add the lemon juice and parsley. Toss to combine. Divide evenly into bowls or plates and enjoy!
CULINARY TIP
  • Any leftovers? Refrigerate in an airtight container for up to three days.
  • One serving is approximately one heaping cup.
  • For more flavour, add spinach, parmesan cheese or feta.
  • One can of tuna is equal to 165g or 5.8 ounces, drained.
  • Make this recipe gluten-free by using gluten-free pasta instead.

This recipe was shared with Parkinson’s Life by NutritionPD founder Richelle Flanagan, a registered dietitian with young-onset Parkinson’s.

Read our full interview with NutritionPD Founder Richelle Flanagan to find out more about the Mediterranean Parkinson’s Programme.

 

Explore our collection of Parkinson’s-friendly recipes

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New Parkinson’s project aims to fill knowledge gap about disease-modifying therapies

A significant proportion of people with Parkinson’s do not know what disease-modifying therapies are or what the term means, a joint initiative by two pharmaceutical companies and several Parkinson’s organisations has discovered
09 January 2026 By Verity Willcocks Sponsored by UCB and Novartis
News disease modifying treatmentssponsored

“Many people with Parkinson’s are not familiar with the term ‘disease-modifying therapy’ and have not heard of it previously,” says Kate Trenam, Head of Patient Engagement (Neurosciences) at biopharmaceutical company UCB.

This was the outcome of a workshop it arranged in early 2023 between people with Parkinson’s from the UK, the Netherlands and Canada alongside representatives of patient organisations Parkinson’s UK and Parkinson’s Foundation. The workshop also found that more knowledge is needed on “what disease-modifying therapies are and how they differ from symptomatic treatments.”

These findings were not surprising, according to Kate, as UCB was already aware of confusion about disease-modifying therapies among the Parkinson’s community.

The workshop was just the beginning of the journey as UCB subsequently partnered with pharmaceutical company Novartis and other patient organisations including Parkinson’s Europe, Cure Parkinson’s, The Michael J. Fox Foundation and Parkinson Canada to produce a narrative for people newly diagnosed with Parkinson’s explaining what disease-modifying therapies are – that is, treatments that could slow the progression of Parkinson’s for longer.

Kate Trenam

Kate (pictured above) explains the motivation behind the project: “It’s essential that the patient community is equipped with clear, accessible information from the outset. This enables individuals to make informed decisions – including whether to consider participation in clinical studies that may contribute to the development of disease-modifying therapies.”

Although scientists have yet to develop an effective disease-modifying therapy, it is believed that finding one could be a gamechanger for people with the condition. Kate says: “While symptom management remains crucial for improving quality of life, disease-modifying treatments offer the potential of altering the disease course itself. By slowing or even halting the progression of Parkinson’s, the aim is to preserve patients’ physical and cognitive functions for as long as possible. This approach has the potential to transform lives and reduce the long-term burden of the disease, making it an area of significant interest and investment.”

The first draft of the disease-modifying therapies narrative

The aim for the narrative was for it to employ standardised, easy-to-understand terms and phrasing that would then be used uniformly by Parkinson’s organisations and the biopharmaceutical companies when communicating about disease-modifying therapies.

Amelia Hursey, Strategic Director for Parkinson’s Europe, says: “What UCB and Novartis were trying to do was to work in collaboration with a collection of patient organisations to create a common agreed-upon set of terms that could be used by everyone when talking about new treatments that will hopefully change the progression of Parkinson’s as a condition.”

Becky Jones

Becky Jones from Parkinson’s UK (pictured above) says: “It was also to equip clinicians and healthcare professionals with the tools to have those conversations about disease-modifying therapies with their patients, which can be backed up by what they might read on our website about disease-modifying therapies or The Michael J Fox Foundation or Parkinson’s Europe website.”

A first draft of the document, entitled “Co-created disease modification patient narrative”, was written and given to 181 people with Parkinson’s and their caregivers from Spain, Greece, the UK and the US, who completed a questionnaire about it.

Kate says the survey indicated that “some key facts about disease-modifying therapies were not widely known among people with Parkinson’s and their caregivers, highlighting the importance of simplifying and clarifying the language used. Their feedback was instrumental in shaping the next draft.”

Becky adds of this stage: “The breadth of what we needed to cover really came out of that survey, in that there’s no ‘one size fits all’ when it comes to Parkinson’s. We were also trying to understand exactly what felt like the right amount of information, without bombarding people with lots of information at the beginning of their diagnosis journey, but also making sure that all the options are there.”

When reviewing the document at each stage, Amelia explains: “What I was looking for was language that would stop people from understanding what benefit could be found if and when these treatments become available.”

The second and third drafts

Despite drawing on the above feedback, in February 2024, a second draft was rejected by the joint UCB and Novartis Parkinson’s Strategic Patient Council (SPC) (which includes The Michael J. Fox Foundation, Parkinson’s Foundation, Parkinson’s UK, Cure Parkinson’s and Parkinson’s Europe), who felt its language was too scientific and hard to understand.

It also scored poorly on two readability tools, including the Suitability Assessment of Materials (SAM) tool, which assesses health education materials. The SPC decided that it should be adapted, aiming for a reading age of 11–12 years.

A notable change at this point, says Kate, was “to help manage expectations – particularly clarifying that disease-modifying therapies are not a cure.”

A revised version was rated just above the target age and scored 67 per cent on SAM – almost ‘superior’. This third draft was reviewed by people with Parkinson’s and their care partners, Patient Advocacy Groups (PAGs) and members of the SPC, who assessed it for readability, tone and clear language.

But their feedback was that the document was now too simple.

The final draft

Becky says: “The general consensus was once it had been simplified it lost some of the nuances of how a disease-modifying therapy might be different to the medication that you’re prescribed at diagnosis.”

Further changes were therefore made until a final version was reached that all parties were happy with. Although it scored lower on the readability measures due to Parkinson’s-specific terminology, survey and focus group feedback indicated that these terms were generally understood by people with Parkinson’s.

At the same time as the narrative, the organisations also worked together on a booklet entitled Your guide to living fully after a Parkinson’s diagnosis, to support the newly diagnosed with key information on how they can maintain a good quality of life. This also includes a section on disease-modifying therapies which uses the same terminology as agreed upon for the narrative.

What happens now

The narrative document will now be a key consideration by the above Parkinson’s organisations when communicating about disease-modifying therapies.

Kate says: “Several patient advocacy groups (PAGs) plan to incorporate disease-modifying therapy messaging into their own communication activities. They intend to use consistent language and key messages from the narrative to maintain alignment and clarity.

Kate then outlined UCB’s plans: “We are currently working on a joint manuscript with PAGs and patients, which we hope will be accepted as a publication which will include a link to the PAG websites, where these resources can be found.”

Becky says: “It will be on [the Parkinson’s UK] website, and we plan to use it in a few different ways. We’re looking at how we can use that language in our newly diagnosed information to make sure that we’re consistent, and across our research communications too. We also have really strong links with healthcare professionals, and so we’ll be talking about how we can empower them to use it when they’re having conversations with their patients about research.”

Parkinson’s Europe has developed a whole campaign around building the knowledge of people with Parkinson’s and their caregivers about disease-modifying therapies and is part of a non-profit Parkinson’s coalition to discuss how to spread the message further. It is also planning to produce translations of the text in four different languages, including French, German, Italian and Spanish. There are also plans to publish the booklet on its website.

Amelia explains how important it is for Parkinson’s Europe to have been involved in the project: “Most involvement in research is done in English by people from the USA and the UK, but this enabled us to bring the mainland European voices into the process of the development of this to make sure that what was included also made sense to them and could be translated successfully.”

Both Amelia and Becky praised the project as a great example of how the Parkinson’s community can work together with industry for the benefit of people with Parkinson’s, with Becky remarking that two “really rich materials” have resulted.

Becky said: “Interaction with biopharmaceutical companies showing that willingness to really put patients at the centre is something that has to be commended, and we’d love to see more of that as we go forward.”

Amelia added: “Without this kind of collaboration, Parkinson’s organisations end up working in silos. Breaking those silos is so important as a community, as a progressive scientific network, who are all trying to bring the voices of all of those with Parkinson’s together across the globe.”

Parkinson’s Europe is sharing this article for information purposes only; it does not represent Parkinson’s Europe’s views and is not an endorsement by Parkinson’s Europe of any particular treatments, therapies or products.

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Foods to avoid with Parkinson’s disease – dietitian-approved advice on what foods to limit and why

Expert dietitian Kinga Topolowska explains how diet can impact Parkinson’s symptoms and medication, and why moderation and timing matter
05 January 2026 By Christy McGhee  Kinga Topolowska 
Advice Recipes & Nutrition

Although diet and nutrition are well-known to be important when it comes to living well with Parkinson’s, it can tricky to work out what foods to avoid with Parkinson’s, or simply limit, and understand the effect certain foods have on Parkinson’s symptoms and medication.

To find out more about which foods are best avoided with Parkinson’s, Parkinson’s Life spoke to Kinga Topolowska, a UK-registered dietitian with over a decade of clinical experience, mainly working in neurosciences.

Kinga currently practices as a freelance dietitian and as a Highly Specialist Neurosciences Dietitian at The National Hospital for Neurology and Neurosurgery (part of UCLH) in London.

Parkinson's expert dietitian Kinga Topolowska on foods to avoid with Parkinson's

With her core expertise in neuromedical conditions such as Parkinson’s disease, Kinga shares her expert opinion on how diet and nutrition are key to living well with Parkinson’s, and what types of foods are best limited or avoided.

Why is nutrition so important to help people with Parkinson’s live well?

“Eating well can make a big difference for people living with Parkinson’s. A diet with plenty of vegetables, fruit, whole grains, and good sources of protein (such as eggs, fish, tofu, or beans) helps the body stay strong and healthy.

“Many people with Parkinson’s lose weight without meaning to, often because of swallowing problems, constipation, reduced appetite, or side effects from medication. Losing weight can lead to weakness, tiredness, and a higher risk of falls, so keeping to a balanced diet is important.”

Can nutrition affect Parkinson’s symptoms?

“Good nutrition can also help with symptoms. Drinking enough fluids and eating more fibre can relieve constipation. Staying well-hydrated can improve energy, thinking, balance, and reduce dizziness.

“The timing of meals matters too. Parkinson’s medicines, like levodopa, often work better when taken on an empty stomach or with a light snack rather than a large meal.

Read more: What is a superfood for Parkinson’s disease?

“In the long term, people with Parkinson’s may benefit from a mostly plant-based diet, such as the Mediterranean-style way of eating or MIND diet. This includes plenty of vegetables, fruits, nuts, seeds, whole grains, and olive oil, with less red meat and sugary foods.

“Although more research is needed, this type of diet has been linked to better health, slower symptom progression, and improved quality of life.”

Why do people with Parkinson’s need to avoid specific foods?

“There is no single ‘Parkinson’s diet’, but some foods can make symptoms worse or interfere with medication, so it’s helpful to know what to limit. Problematic foods usually fall into a few categories:

Foods that interfere with Parkinson’s medication

“In a small group of people living with Parkinson’s, high-protein meals can reduce how well levodopa is absorbed, meaning it may not work as effectively. Protein itself is important, but timing matters—try taking levodopa on an empty stomach or with a light snack, and eat larger protein portions later in the day. Iron supplements and iron-fortified foods can also block levodopa, so take them a few hours apart from your medication.”

Foods that worsen Parkinson’s symptoms

“Constipation, low blood pressure, reflux, and fatigue are common in Parkinson’s. Highly processed foods, low-fibre diets, dehydration, and large sugary meals can make these symptoms worse. Caffeine or acidic foods may trigger heartburn or jitters for some people. If a food regularly makes you feel unwell or ‘off’, it’s worth limiting.”

Foods that are unsafe to swallow if you have Parkinson’s

“Many people with Parkinson’s develop swallowing difficulties. Hard, dry, or chewy foods (like tough meat, dry crackers, popcorn, or nuts) can increase the risk of choking or food going down the wrong way. These foods may need to be avoided or prepared differently – cut smaller, softened, moistened, or pureed. A speech therapist can give personalised advice.”

Foods that can affect the overall health

“Foods high in fat and sugar – such as packaged sweets made with palm oil or products with very long shelf lives – and those rich in saturated fats offer little nutritional value. They can contribute to weight gain, inflammation, and poorer heart health.
“In general, what is not good for overall health is unlikely to benefit brain health, so these foods are best limited. Choosing whole foods – vegetables, fruits, whole grains, legumes, lean proteins, nuts, seeds, and healthy fats – supports better energy, digestion, and overall wellbeing.”

How can people with Parkinson’s identify quickly whether a food should be avoided or not?

Dietitian-approved tips to help to spot foods best avoided with Parkinson’s:

  • Choose fresh, whole foods over processed ones
  • Consider medication timing, especially with levodopa and iron
  • Notice personal triggers that worsen symptoms (keeping food and symptoms diary can help to identify triggers)
  • Adapt food textures if swallowing is difficult.

What foods should people with Parkinson’s avoid or limit?

Examples of foods to limit if you have Parkinson’s:

  • Fatty meats, butter, cream, fried foods. SWAP FOR: choose olive oil, lean proteins, nuts, and seeds instead
  • Fast foods, processed meats, packaged snacks. SWAP FOR: for fresh meals and fibre-rich foods
  • Sugary drinks and sweets. SWAP FOR: choose fruit or water
  • Large protein meals at medication time. SWAP FOR: eat protein spread in smaller portions throughout the day or later in the day, if possible
  • Iron supplements taken with levodopa. SWAP FOR: take separately instead
  • Excess alcohol (as it can affect balance, hydration, and medication)
  • Hard or dry foods if swallowing is difficult (soften, moisten, or change texture)

Print out our PDF list and stick it somewhere handy – like the fridge or cupboard door – to help you remember which foods to avoid or enjoy in moderation.

Free PDF: Foods to limit or avoid with Parkinson’s

What else do people with Parkinson’s need to know about diet, nutrition, and foods to limit or avoid?

“Nutrition won’t cure Parkinson’s, but it can make a meaningful difference. Eating mostly whole, fibre-rich foods, staying well hydrated, and timing protein away from medication can help many people feel better and get more benefit from their treatment. Small, realistic changes work best.

“A helpful approach is the 80:20 rule – aim to eat nourishing foods most of the time, while allowing some flexibility for enjoyment or social occasions. Balance and moderation are key.

“No single food is the enemy, and exclusion diets are not recommended, as they can increase stress and lead to nutrient deficiencies. For personalised advice, speak with a registered dietitian familiar with Parkinson’s.”

Read more about Parkinson’s, nutrition and living well here and see our collection of Parkinson’s-friendly recipes here.

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3 things we are excited to see for the Parkinson’s community in 2026

Parkinson's Europe's Strategic Director Amelia Hursey shares three major activities that will take our work forwards in the coming year
31 December 2025 By Amelia Hursey BSc MSc.  Verity Willcocks 
Insights Parkinson's Europe
Amelia Hursey

In 2026, Parkinson’s Europe will continue its mission to improve life for people with Parkinson’s, as set out in its 2025-2028 strategy.

Almost 12 months after the strategy was launched, we speak to Strategic Director Amelia Hursey about three major activities that will take the organisation’s work forwards in the coming year.

From the World Parkinson’s Congress in May, to a new online hub for our Engagement Network, which empowers people to take positive action for Parkinson’s, we’re set for an incredible 2026!

Parkinson’s Europe’s Strategic Director Amelia Hursey: three 2026 highlights for the Parkinson’s community

  1. World Parkinson’s Congress 2026 

“The World Parkinson’s Congress (24–27 May, Arizona, USA) is immensely important for gathering the global Parkinson’s community together and sharing knowledge. It also increases visibility for the Parkinson’s community.

“Led by those with the condition, it’s vital for making connections and developing more understanding about what’s happening for people with Parkinson’s across the world.

“I hope that it will empower people to thrive with their condition as well as inform them about new innovations designed to support living life to the fullest.”

  1. New online hub for the Parkinson’s Europe Engagement Network

“The Engagement Network is our online call to action network. Anyone who wants to improve life for people with Parkinson’s can sign up and tell us what they are interested in. We will then send them a list of opportunities they can get involved with.

“So far, we have shared this information via email, but now we want to create a secure online space where people can find opportunities they might not have known they were looking for. For instance, they could help shape a research trial, share knowledge with someone else about their Parkinson’s journey or provide new data and insights.

“We hope this will really bring together and amplify the voices of everyone affected by Parkinson’s across Europe.”

  1. Our empowerment event

“Toward the end of 2026 or at the beginning of 2027, we will bring together representatives from all of our member organisations and our steering groups for an event in Leuven, Belgium. This will be the first in-person members event we have hosted since 2018.

“It’s an excellent opportunity to make those vital cross-border connections that connect the Parkinson’s population across Europe. We will run workshops to help empower our fantastic members and enrich the activities that they do.

“We also plan to work with Health House [a Deep Brain Stimulation educational facility in Leuven] to share their amazing Smart DBS exhibition with all of our attendees. We’d like to combine this with a trip to the European Parliament.

“This would be a chance to introduce MEPs to our amazing Parkinson’s community and to increase the visibility of our call to action for more neurodegenerative nurses in Europe.”

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Foot exercises for Parkinson’s to do at home

29 December 2025 By Josefa Domingos  Sarah Dawson 
Advice physiotherapywalking

What are the best foot exercises for people with Parkinson’s? If you’re living with Parkinson’s, everything from a change in gait or balance problems to increasing stiffness can have an effect on your feet. Along with visiting a podiatrist and choosing suitable footwear, there are foot exercises you can do at home to help.

Stretching and exercising muscles in the feet can help to reduce or prevent stiffness and rigidity, as well as improve circulation and the strength of foot arches.

Physiotherapist (and President of Parkinson’s Europe) Josefa Domingos – who has spent decades specialising in physiotherapy for Parkinson’s – has approved the following advice.

These exercises only take a few minutes and can be done at home with no equipment. Work them into your daily routine and you’ll notice the benefits.

Foot exercises for Parkinson’s:

1. Rise up and down on your tiptoes

Stand with your feet parallel. Hold on to a steady piece of furniture for support and rise slowly up and down on your tiptoes. This exercises the leg muscles, helps strengthen the foot muscles and improves ankle mobility.

2. Stretch the soles of your foot

Sitting down and stretch out your foot. Work one foot at a time to really concentrate on getting the best stretch you can. Repeat this exercise a few times on each foot.

3. Rotate your feet

While still sitting, extend your feet one at a time and rotate slowly at the ankle, as if you are trying to draw the largest circle you can with your big toe. Do this first in one direction and then in the other. Repeat 3-5 times with each foot.

4. Mobilise your toes

Remain sitting with your feet resting on the floor. Move your toes up and down in one movement. You can also try wiggling your toes, to encourage mobility and flexibility as much as possible.

If you struggle with any of these exercises, or the condition of your feet is affecting how you walk, speak to your GP, podiatrist, Parkinson’s nurse or physiotherapist for additional support.

Find out more about Parkinson’s symptoms, such as posture and balance problems.

 

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