Embedded Files
Living with the disease (5 mins)
Living with the disease (5 mins)
Overview of symptoms
Overview of symptoms
As you've started to learn, people with MJD experience difficulty with:
mobility and movement, e.g. walking, weakness in arms and legs,
communication/talking,
swallowing and eating,
eyesight,
getting a good sleep,
continence, e.g. ability to control the bladder and bowels, going to the toilet,
muscle cramping, and
pressure sores (from not being able to move around).
The disease gets worse over time
The disease gets worse over time
Symptoms of MJD develop over 20 years, causing many physical problems that impact the whole person. It is progressively disabling.
The diagram below shows how MJD and its symptoms gets worse over time, until people with MJD can no longer move their body.
It shows how people with MJD are categorised into 4 stages of the disease:
At risk
Mild
Moderate
Severe – this is the worst stage of the disease.
📝 Activity
📝 Activity
Starting from the 'At Risk' circle, select the 'i' icons on the diagram to learn about the symptoms at each stage of the disease. Click the X (top right) to close the window, when you have finished reading.
Each of these symptoms and issues are complex on their own, and for people with MJD, they can all happen at the same time. It can be overwhelming, frightening and exhausting. Looking after these physical symptoms is difficult for people with MJD and their carers. Multiple medical and Allied Health staff are also involved in a person's care.
There are also cultural complexities. In Australia, health and disability services are mainly designed for non-Aboriginal and Torres Strait Islander Australians. This means they are not always culturally safe. This is another challenge for families and carers living with MJD.
What is MJD like?
What is MJD like?
Although physical symptoms get worse over time, the intellectual capacity of people living with MJD is not changed by the disease. This means that their thinking is not affected, and so they are able to make their own decisions and choices as their disease progresses.
So what is MJD like from the perspective of someone living with the disease? How does it impact on quality of life?
Listen to Bowie's experience.
Caring for a person living with MJD
Caring for a person living with MJD
In the rest of this module, you'll learn more about MJD and its symptoms in detail. You'll also learn strategies to support someone living with these symptoms.
Want to know more?
Want to know more?
→ If you'd like to learn more about the symptoms of MJD, select the 'Watch Symptoms Video' button to see an interview with rehabilitation specialist Dr Howard Flavell.
→ There are a large range of MJD Help Sheets designed to support you caring for someone living with MJD. These are at the end of each section and are also on the MJD Foundation's Resources page.
Page updated
Google Sites
Report abuse