As mentioned, people living with MJD can be incontinent, which means they might accidentally wee and poo when they don’t want to, impacting their personal hygiene and care. They can also have issues fully emptying their bladder and bowel, and may need to go to the toilet many times during the day – this can also increase their risk of falling and injuring themselves.  

Due to their mobility issues, a person with MJD can have trouble quickly and safely getting to the bathroom, transferring onto the toilet, and also undressing and dressing. As a result, they might not make it to the toilet in time. Their mobility issues may also mean that they can’t independently clean themselves up. As the disease worsens, people need full support from their carers to go to the toilet and to shower.

Not being able to go to the toilet independently, or to make it to the toilet in time, can be very embarrassing. As well as affecting personal hygiene, it can impact a person's wellbeing, social interactions, and their ability to move freely in their community.  

Untreated, bladder and bowel issues can have a significant impact on a person’s health, and in the moderate and severe stages of the disease, a person may need specialist support or surgery to treat these issues.