Is there a link between cerebral palsy and nutrition that you’re not getting?
Updated: Apr 3
A few months ago, I took the plunge and contacted a dietitian. The decision came after what felt like years of semi-successful yo-yo dieting, and what I wanted was something more substantial, more sustainable, and more … appetising.
I’ve tried different diets and alternative techniques to manage my weight over the years – it became a fixation since Covid. I might have benefited from working from home, but my waistline hasn’t.
However, it should be said that my pursuit wasn’t just fuelled by something superficial. The increased sedentary lifestyle and temptations to eat more weren’t just impacting my dress size. What truly worried me was its impact on my mobility – something I hold sacred (As I’m sure many readers can relate!)
As someone with cerebral palsy, I’ve been raised to take extra care of my body. We’re constantly reminded to exercise, move around as much as possible, and be careful of wear and tear on our joints.
What I observed as I gained weight was that it became harder to walk, my pain increased, and I felt like I was more aware of that wear and tear my paediatricians warned me about 20 + years ago, and I was growing concerned about how this would impact my health in the future.
Despite numerous trials and errors, I persevered. When I didn’t get the information, I needed from one nutritionist, I went to another … and when I didn’t get it there either, I began investigating dietitians.
This led me to find Madeleine Ward, a qualified dietitian. Within the first few sessions, we were talking about far more than just my eating habits. She was getting a look at my lifestyle habits, what food I enjoyed, and why I felt I'd had setbacks in the past.
There was also an encouragement to go for blood testing and a breakdown of any medications – something that never occurred to me, but a standard practice for dietitians.
These were just some of the things that made Madeleine’s service feel more unique and precise from other diet roads I had been down.
Did you know?
Dietitians can be covered by NDIS, according to the disability support guide, “Dietic and meal planning services can improve your independence, economic participation, social inclusion and/or general wellbeing.”
Dietitians are not only trained to help with meal planning and weight loss -, they cover a range of services, including bowel issues, unintentional weight loss, tube feeding, and supporting behavioural change.
You can learn more information about dietic services and NDIS eligibility through the Disability Support Guide.
I had the chance to speak with Madeleine about her work. Here's what we talked about:
1. Can you explain your dietitian role and why it differs from nutritionists?
Dietitians and nutritionists have similar roles in many respects, offering support and knowledge about nutrients in food and helping people to make healthy choices but nutritionists are not regulated or trained medically as dietitians are.
A dietitian is trained for between 4-7 years to understand chronic and other disease conditions including as experienced by people living with a disability. They are accredited through a national body called dietitian Australia and must keep up to date every year with nutrition evidence.
Nutritionists can be highly qualified at a Master’s degree level down to as little as a short 3-week nutrition course. More highly qualified nutritionists can register with the Nutrition Society of Australia however they are not regulated under this body.
2. Are diets a good idea? Why or why not?
Diets generally are not the best way to take care of your health when it comes to food. Some people who have diagnosed conditions like irritable bowel syndrome or medication-resistant epilepsy may benefit from a specific diet but these need to be very closely monitored by an experienced healthcare team to tailor it to the individual.
Many diets are designed the same for everyone, but every person is unique with different nutrition needs. In my experience going on a diet more frequently sets people up for failure as they can be very restrictive and difficult to achieve long term.
3. When you’re working with new clients, what are they typically hoping to achieve?
Most clients come to me for support to change something, whether it be to improve their appetite, make better food choices, have more energy, or tackle a health issue. Many clients reach out to me for support to lose weight but soon realise that when they start eating better, they feel better generally and are more motivated to make long-term changes to improve their health. In my experience new clients are looking for a helping hand, not someone to magically cure their problems but to support and guide them to better health. That’s what I hope clients receive when working with me.
4. Why is nutrition so important?
What a big question! We spend a large portion of our lives eating food for our survival and for our bodies to function as efficiently as possible. Yet we are often not well nourished by the food choices we make.
The body talks and will soon let us know when we are not getting enough nutrition from our food. For example, if we are mostly choosing highly processed carbohydrate foods and not getting enough dietary fibre, our digestive system might communicate with bloating, pain, diarrhoea, and constipation. This can lead to other problems like low appetite, mood changes, brain fog, poor nutrient absorption, weakened immunity or other more serious health consequences.
When I work with clients, I encourage them to listen to their “body talk”, to become more mindful about how the body responds to food choices.
5. How are people with disabilities' dietary needs unique?
Living with a disability can add an extra layer of complexity to people’s health needs and ability to care for themselves with good nutrition. Many people are dependent on others to provide their food or have specific disability-related health conditions that require specific nutrition strategies for their best health.
A big factor for people with disabilities relates to the practical side of life, how much energy it requires to select and prepare food or to even think about what to eat. This can be a daily struggle let alone dealing with the physical challenges of preparing or even eating food. Support from a dietitian to come up with simple, nourishing, delicious meals can be very helpful, also for carers of people with disabilities.
6. Do people with cerebral palsy have specific nutritional requirements? What are they?
Yes, they do. From childhood through to adulthood there are many health challenges that are impacted by nutrition. For example, children may not reach their growth and development potential if they are not well nourished. Good nutrition early in life can help to establish and maintain immune and gastrointestinal function, mental health and cognitive ability, or healthy bone development.,
Other nutrition issues that may be present for someone with cerebral palsy are:
Oral-motor problems e.g. swallowing and chewing can be challenging and affect adequate food and nutrient intake
Fine-motor problems i.e. causing difficulty with daily food tasks like food preparation and eating
Gastrointestinal problems are common e.g. reflux, vomiting, constipation, diarrhoea, nutrient malabsorption
Vitamin deficiencies like Vitamin D from lack of sun exposure; iron from lack of iron-rich foods or poor absorption; inadequate fatty acids from a deficient diet, to name a few
Weight and body composition issues – overweight or underweight, can be partly due to limited mobility, or excessive physical movement which affects how much energy the body stores and uses, excessive or low appetite; imbalance in macronutrients – carbohydrates, fats and protein
Self-care with food acquisition and preparation can be a very big challenge for many people with cerebral palsy as well as for their carers
7. How can diet influence our mobility? The right nutrition can help to build and repair muscle tissue, and bone strength and to maintain a healthy nervous system. This can improve strength and stamina for daily physical movement. Diet can also improve brain and mental health leading to greater motivation for movement.
8. Many people with CP have more sedentary lifestyles due to their lack of mobility. How can we compensate for this with dietary changes?
It is important to match dietary intake with dietary needs. Assessing an individual’s dietary needs based on their activity levels is the starting point. For example, smaller portion sizes of a healthy meal may be enough to satisfy the body’s nutrition needs for someone who is sedentary and uses less energy each day. It is also important therefore to “make every meal count” to ensure maximum nutrition in smaller portions of food. As a dietitian, I work collaboratively with other health supports to address mobility this might include working with a physiotherapist, exercise physiologist, support workers or carers.
9. Something we don't know about you ...
I am a bit of an activist and health advocate when it comes to nutrition as I believe we are all very much challenged by our current food environments, bombarded with so much information and food choices that it can be difficult to nourish ourselves well. I think if we can understand our own bodies’ needs better, we can nourish ourselves to better health and rely less on the health system overall. One key message I like to give around food is to eat as close to nature as possible, the less processed our food is the better nourishment we will receive.
Being a dietitian is very rewarding and I feel privileged to work with so many incredible humans who are living with disabilities and their support networks.
Do you want to talk to Madeleine?
You can reach out to Madeleine by emailing firstname.lastname@example.org or by calling 0411 986 775.