What is Muscular Dystrophy?
Muscular dystrophy (MD) is a group of inherited muscle disorders in which there is skeletal muscle weakness and muscle tissue loss. The cause can be a mutation of a protein which is responsible for muscle strength or some other reasons such as nutritional defects during pregnancy.
MD is passed down and can run in families but some types develop out of the blue without any family history. The diagnosis is made through muscle biopsy, creatine phosphokinase markers, ECG, EMG and many other lab tests. A physical exam by the doctor may reveal muscle wasting, joint contractures and scoliosis (abnormal curve of the spine).
Children are mostly susceptible but adults can develop muscular dystrophy that is often less disabling. With young kids, symptoms may develop fast and into life-threatening complications. Quality of life is severely affected and the child has poor balance, weak muscles and poor gait which make him susceptible to falls and injuries. They may become wheelchair bound early in life and needs much support in meeting their day to day needs.
There is currently no cure for MD, however, physical therapy, orthopedic appliances, corticosteroids and reasonable physical activity can control symptoms.
Challenges Faced by People with MD
Individuals with muscular dystrophy are at great risk for falls since their muscles are weak. They often develop joint contractures and increasing difficulty in doing things with their hands and in moving about. They experience loss of range of motion with their hips, back, arms, legs and just about the whole body.
Many young children with MD have developmental delays and some have mental retardation. Over time, they can have complications such as heart disease, difficulty breathing and other lung problems. They can develop confusion, impaired thinking and depression. Since MD is a progressive disease, those who have this condition may eventually lose their ability to walk.
How Can Home Care Support Benefit Them
There is no substitute for early medical intervention, physical therapy, occupational therapy, physiotherapy and steroids in managing symptoms. However, outside these modalities, families are often faced with the challenge of taking care of loved ones with MD at home 24/7. That may not be feasible because of work or social commitments, and valuable home care support can help fill the void.
Personnel care attendants, home care support workers and professional caregivers can help people with muscular dystrophy in a number of ways.
- Assist in transferring from bed to wheelchair, commode, or vehicle. Home workers put safety above all else and use mobility aids (e.g. canes, walkers, scooters) as necessary.
- Perform activities of daily living such as bathing, grooming, and eating. People with MD have difficulty performing even the simplest of activities. PCAs can assist them as needed.
- Prepare healthy meals which are high in protein and low in fat and carbohydrates.
- Monitor client’s weight at home, with the goal of maintaining healthy weight so as not to put more pressure on already weakened muscles.
- Help the client perform safe and simple range of motion exercises and muscle strengthening under a physician/PT-directed home exercise program to prevent contractures and maintain muscle tone.
- Assist the client in performing low-impact aerobic exercise but avoid strenuous physical activities. Prevent the client from being immobile for long periods.
- Instruct, guide and assist the client in the home environment, using handrails, walkers and other assistive devices safely.
- Make sure medications are taken on time and in appropriate doses.
- Observe and report side effects of these medications to medical professionals.
- Assist client in using a spirometer to promote lung function or sleep apnea device to breathe easier.
- Be aware of potential interference to pacemakers and implantable defibrillators for those with heart problems by keeping cellphones, MP3 players, and loud speakers at a safe distance.
- Give not just physical but emotional support for clients who are feeling down but are willing to talk about their feelings over their condition.
- May respond with general, educated answers about symptoms but will seek expert advice from medical professionals about complex questions which the client asks.
All these can be provided by competent and trustworthy home care support workers who are willing to go the extra mile in caring for your loved ones with MD. Since there is no cure yet for this debilitating disease, the goal is to maintain muscle tone and strength for mobility so that clients would retain the ability to walk, prevent contractures and delay the overall progression.
With proper help, clients can stay fully functional in their jobs or at home for as long as possible. When the time comes when they can no longer take care of themselves, home care support can step in and extend valuable help.
It is difficult to see your young son or daughter need help with actions we take for granted like sitting, getting up, or moving about. You know that there will be tougher times ahead as MD progresses. But at least you are rest assured that with medical care, your unwavering love as a family and some effective home care support, it is indeed possible for those with muscular dystrophy to live independently and live a reasonably fulfilling life.