When it comes to choosing the right kind of activity, low-impact exercises can help slow the progression of osteoarthritis- a common complication of Alkaptonuria (AKU). While high-impact and contact sports are typically discouraged due to the stress they place on joints, many people with AKU discover that low-impact activities such as swimming, hydrotherapy, and physiotherapy can make a meaningful difference to their mobility and quality of life.
To explore this further, we spoke with Jim Fish and Sian Williams, who shared their perspectives on water-based exercise and Pilates. We also heard from an AKU patient about their experience preparing for and recovering from knee replacement surgery.
Staying Afloat with AKU: Insight from Jim Fish
In this interview, we speak with Jim Fish- a certified Swimming Fundamentals Coach with Swimming Canada as well as an Aquatic Fitness Instructor and AKU patient. From his early days in competitive swimming and water polo to open-water races and a strong community built at the pool; Jim’s story is a powerful reminder of how the right kind of movement can support both physical health and emotional wellbeing. Let’s dive in!
We firstly asked Jim what drew him to water-based exercise:
“Having an early diagnosis in 1964, all my doctors could recommend was to avoid physical labor and contact sports. I spend many happy summers at the local swimming pool and decided to enter competitive swimming at 13. This progressed to Water Polo when I was 16, which allowed me to scholarship in Water Polo at Simon Fraser University (Kinesiology), and Swimming at University of Alberta (Microbiology).”
Jim Fish at the AKU International Patient Workshop 2024
He then went on to talk about how it helped him manage his AKU symptoms, as well as mental health over time:
“Swimming is an ideal exercise for anyone as it is great for cardio, gives a full body workout, and is easy on joints. After university, I continued to swim recreationally and segued into long distance open water 40’s competing in races of 1.5K to 10Km distances. Along the way, I build a terrific community at my local pool with the staff and other swimmers. The social elements of a community pool is very important to mental health as you automatically have access to likeminded people who have decided to keep in shape.”
We then asked Jim what he sees as the specific benefits of water-based exercise for people with AKU:
“Beyond the mental, the physical rewards are amazing for people with AKU. Strong cardio keep our rib cage/lung volume up and build the muscle which support our unfortunate joints. And in the later, there is no disease…everyone is equal.”
For someone with AKU who’s never tried water-based exercise before, Jim had some reassuring words of advice:
“Some people avoid pools and bathing suits due to body image issues. I got through this by realizing the EVERYBODY has body image issues, so the pool is really a no-judgement zone. If modesty is an issue, be assured that all pools have private changing rooms. Cost are reasonable, and all the equipment needed are flip flops for on deck and a bathing suit. Goggles are great if you want to swim laps, but I suspect many people love Aqua Fit classes because you don’t get your hair wet and the music is great!”
Finally, we asked Jim if he had a quote, mindset, or reminder that helps him stay grounded and motivated, especially when living with a rare condition like AKU:
“Once on the pool deck, you are in a pleasant, warm, well controlled environment with plenty of trained staff to assist you or direct you to possible classes. Once in a class, most people make new friends and there are often opportunities to join in for coffee and socializing after working out. These people are not athletes…just regular folks who know they feel better and in control when they have exercise in their life.”
Jim’s experience underscores the importance of low-impact, consistent movement in managing AKU-not only for joint health and mobility, but also for emotional wellbeing and social connection.
Posture, Pain Relief, and Pilates: Insight from Sian Williams
Living with AKU can bring a range of physical challenges-particularly around posture, joint pain, and mobility. But with the right kind of movement, it’s possible to feel stronger, more stable, and more in control. That’s where Pilates comes in.
With its focus on alignment, core strength, and slow, controlled movement, Pilates offers a low-impact, adaptable way to support joint health and overall wellbeing. For people with AKU, it can help reduce pain, improve flexibility, and build lasting strength, without placing extra strain on vulnerable joints.
You may recognise Sian Williams from last year’s AKU International Patient Workshop, or from our online Pilates video, where she guided participants through seated exercises designed with AKU in mind. We caught up with her again for a conversation focused on self-care, exploring how regular, gentle movement can become a powerful part of managing AKU. She began by highlighting the importance of posture:
“Good posture is crucial for maintaining joint stability and strength. Strengthening your core abdominal and back muscles helps to support joints and to alleviate pain. It also creates space for your internal organs to function optimally.”
To illustrate this, Sian suggests trying a simple body awareness exercise:
“Try sitting up straight and breathing deeply. Feel how that creates ‘room’ for your lungs and your gut. Then try slumping and feel how ‘squashed up’ everything feels, both inside and out.”
She adds that poor posture over time can have compounding effects:
“Prolonged bad posture results in tightening and shortening of the neck muscles, weakening and over-stretching of ligaments and excessive pressure on joints.”
This is where Pilates can be especially valuable. “Pilates works to strengthen your entire muscular and skeletal structure, helping to realign imbalances and create the best posture available to each individual person, whatever their physical problems. Following a regular programme of Pilates-based exercises helps to promote over-all strength and function, creating a stronger, more mobile, happier body.”
Her message is clear: consistent, gentle movement tailored to your body’s needs can make a long-term difference, especially for people living with AKU.
Sian Williams, AKU International Patient Workshop 2024
When asked if she had a quote or mindset she lives by, she offered this thoughtful comparison:
“Looking after your body & your health is the equivalent of taking care of your car or bicycle. In order for your transport system to work well, keep you safe & remain efficient for a long time you have to get it checked regularly & maintained! Exercise & healthy eating is the equivalent of an annual MOT. Your body has to be your vehicle for life!”
Sian also recommended www.pilatesfoundation.com, a valuable resource for finding qualified Pilates instructors wherever you are and exploring general Pilates information.
You can also find a video of Sian leading a series of seated exercises, specially designed for people with AKU, on our website and YouTube channel – be sure to give them a try!
Managing Pain, Supporting Recovery: Physical Self-Care for Life with AKU
Living with AKU often means dealing with joint pain that can be both physically limiting and emotionally exhausting. When left unmanaged, chronic pain can affect mobility, independence, and overall quality of life. That’s why pain management is a vital part of physical self-care.
Tools like Pete Moore’s Pain Toolkit, a popular resource among AKU patients, encourage people to take an active role in their care. It covers everything from pacing daily activities and managing setbacks to goal setting and staying active, with a variety of resources including toolkits, videos, booklets, and online courses-all designed to help people with chronic conditions like AKU take control of their pain and physical self-care.
Of course, there’s no one-size-fits-all solution. For some, pain relief comes through medication such as anti-inflammatories or painkillers. For others, especially those experiencing more advanced joint damage, joint replacement surgery may be recommended to restore mobility and reduce long-term pain.
To offer a real-world perspective, one AKU patient kindly shared their experience of preparing for, and recovering from, double knee replacement surgery.
Surgery, Recovery, and Self-Care: Honest Advice from an AKU Patient
Many AKU patients undergo joint surgeries-particularly knee replacements. It’s a big decision and the recovery process can feel overwhelming. That’s why we’re grateful to one AKU patient who shared their honest, first-hand experience to help others feel more prepared.
“I think for me I was worried about having a spinal block when I had my double knee replacement, but it was totally painless, anyone facing knee surgery need not be concerned.”
They also stressed the importance of preparing both your body and home environment in advance:
“Try if possible, to get fit prior to surgery, it helps the recovery time tremendously… I bought myself a long shoehorn, a leg lift (long handle with a loop on the end) and a sock aid. These proved invaluable post op.”
They shared that maintaining healthy habits played a key role in their recovery, particularly by focusing on a balanced diet to support healing while their activity was limited.
Finally, they offered this encouragement to others going through the same thing:
“Make sure you do the exercises after surgery, it will hurt but the results long term are way better and recovery time is faster. Everyone’s recovery time is different, don’t worry if someone you know recovered quicker.”
We hope these insights have been helpful-whether you’re considering a new type of exercise, managing daily pain, or preparing for surgery. A heartfelt thank you to Jim (@hottubyoga), Sian, and our contributing AKU patient for generously sharing their experiences and expertise.
Resources mentioned:
- www.pilatesfoundation.com
- Pete Moore’s Pain Toolkit: https://www.paintoolkit.org/resources/toolkits