Living a Full life with Muscular Dystrophy

Muscular dystrophy is an umbrella term for a group of genetic disorders that cause the body’s muscles to deteriorate and weaken over time. Muscular dystrophy affects the voluntary muscles that control movement in the arms, legs, and trunk region.  There are many different forms of muscular dystrophy (MD) – the most common type being Duchenne MD.

Living with an illness such as Muscular Dystrophy can be challenging and scary but with the right care in place, it is possible to cope with the illness.  Below are simple tips to help cope with Muscular Dystropy:

Accessibility:  Make the home accessible with ramps, lifts, wider doorways, grab rails and other changes to ensure the person can move around on the wheelchair independently.  Make a note of public places that they may like to visit, and check beforehand if that place is accessible for people with a wheelchair.

Moving around:  Mobility can take the form of strollers,braces, walkers, scooters, manual or powered wheelchairs and many more.  It is important to make the child or adult feel comfortable and accept their new mode of mobility so that they can move around freely themselves.

Diet and exercise:  A healthy weight should be maintained to prevent burden on weakening muscles and to decrease the risk for breathing problems.  Take the advice of the doctor about the dietary changes that are required. Low impact aerobic activity is recommended to improve the physical well-being.  Talk to a physiotherapist to find the appropriate exercises as per the person’s condition.

Safe eating:  People with MD can find it difficult to swallow.  In order to avoid choking hazards, prepare food and drink that are easy and safe to consume.  Incorporate soft food and food that have been pulverized in a blender.

Sleep well:  It may be difficult for a person with Muscular Dystrophy to find to find a comfortable sleeping position due to muscle weakness.  A Physiotherapist can recommend special mattresses, pads or beds that can enhance comfort and improve the quality of sleep.  Cultivate a good bed time routine with a set schedule.

Being organized: Keep medication, equipment and medical files properly organized and labelled.  Setting reminders and using pill boxes can help the person remember to take medications on time.  Any medical equipment  should be cleaned immediately after use, so that it is ready for the next time.

Point of contact:  Assign an emergency contact list and make sure that the people on the list know how to respond to any health or safety issues that could be experienced.

Ask for assistance:  Reach out to people that can help with things that will be required.  They may be family, friends, class mates or colleagues.  Professional home nursing services have the right expertise to deal with people with chronic illnesses.

Emotional care with Muscular Dystrophy is of utmost importance.  Open communication and Independent living should always be encouraged in order to provide the right support they need.

 

 

Sources:

Storyhive  – Telus

Muscular Dystrophy News

Mdedge – Neurology reviews

Parent Project MD