As an adult living with MPS, physical limitations, communication difficulties, health issues and regular treatments can make life challenging. Depending on your level of disability and personal circumstances you may choose to live independently, or with someone else who can provide some additional support when you need it. There are all kinds of assistive equipment that you can use to tackle issues such an inability to reach high places, or a lack of dexterity. There are options for in-home personal care and a vast array of modifications that can be made to your home to make it easier to get around and complete daily tasks. Even if you can walk; you may use a wheelchair or crutches for longer distances. There are pedal extensions and customised booster seats if you choose to drive a car; and accessible public transport if not. An occupational therapist can provide advice on equipment, therapies, and environmental modifications that can make daily living easier.
For more information
You can talk to your specialist or GP about connecting you with an occupational therapist.
There may be an independent living centre in your local area where you view and try out different kinds of assistive equipment to suit your needs. To find out, visit: http://ilcaustralia.org.au/
As it is for most people, having a good network of family and friends can be extremely important for getting through the difficult times and sharing in the good times. Old friends who know you well will likely understand that you need a bit of extra rest sometimes, or cannot walk for hours on end through an art gallery. Newer friends may need you to explain. Either way, spending time socialising with family and friends is important for your mental health and contributes to feelings of connection and belonging.
Whether you enjoy the single life, or are looking for a partner to share your experiences with, there are lots of ways you can meet new people. Joining local clubs, travelling and dating sites are all options for those with disability and without.
Some adults with MPS date and end up marrying someone who is unaffected by MPS. Some say there can be challenges around acceptance of their relationship from others. Often questions may be raised about the chances of having a child with MPS, genetic testing and more. These are all issues that can be worked through, both together as a couple and with support from counsellors, some people in this situation have successful long term relationships and families.
For general relationship advice, you can contact a relationship counsellor in your local area.
Visit: www.hgsa.org.au/asgc/find-a-genetic-counsellor to find out more about genetic counselling.
Education/Employment & Lifestyle Programs
When you finish school, whether you have attended mainstream or special school, you may decide to continue with further studies. You may consider going on to University, Tafe, supported adult education or organised day programs, depending on your abilities and life goals.
Adults with MPS who choose to enter the mainstream workforce say it can be tough initially to break-in. Employers may have concerns around how your disability will affect your work and how their workplace can accommodate your needs, but it’s important to be persistent and seek support if you need it. There are employment services specifically for people with disability as well as organisations that can help employers make the changes they need to employ people with disability.
Heather Anderson has MPS IV Morquio A and works in the public service. She is currently an Assistant Director at the NDIA. She says getting a job when you have a disability can be challenging but it can be done. “You just need to give it a shot and be persistent. Don’t let the knockbacks get to you and don’t be afraid to take a different path to the one you intended.”
If the mainstream workforce isn’t for you, there are lots of other options you can explore including volunteering and supported employment.
Day programs offer adults with disability, who are unable to work, the opportunity to pursue their lifestyle goals and take part in community based activities. They can also be a great place to make new friends and learn new skills.
For more information
You can talk to your school or disability support service about your education and employment goals and what you need to achieve them.
Visit: www.jobaccess.gov.au for information about employment for people with disability.