The guy writing this FAQ does, but opinions vary. Some pioneers find it degrading or sappy.
Frequently Asked Questions
Original FAQ contributer: Sean Clogston
Do you get frustrated with what your body can't do?
Sometimes, but we try to concentrate on what we can do and not worry too much about what we can't do.
Can you leave your homes?
Yes, we can leave our homes. Through the use of power wheelchairs and more portable medical equipment, like ventilators, it is much easier for us to go out. Some of us have difficulty getting out, due to lack of transportation or personal care services, but many of us who have such assistance can get out frequently.
What is a ventilator?
A ventilator, sometimes called a respirator, is a mechanical device that assists people with breathing. They are especially important to people with DMD, because breathing becomes more difficult with age as chest muscles deteriorate.
Do you live with your parents?
Most of us do. Some parents have it really tough, because respite is not always easy to find or afford.
Are you in pain?
DMD itself does not cause pain, however some of us do have pain on occasion. Oftentimes this is due to muscle aches and pressure sores caused by being unable to move around. Pain is usually treatable with over-the-counter medications, but can occasionally require prescription medications. Advances in seating technologies in wheelchairs and mattress technologies have made it much easier to avoid pain caused by immobility.
Is Multiple Sclerosis (MS) the same as or similar to Muscular Dystrophy (MD)?
No, they are not the same, nor are they related. Both cause severe disabilities but are not related. Visit the National Multiple Sclerosis Society web site for information on MS.
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