Muscular Dystrophy HMSN1?

Does anyone out there have it?? What is your quality of life like, and how old are you? Also, how old were you when you were diagnosed? Thanks for answering

its also known as charcot-marie-tooth disease

my dad has Muscular Dystrophy HMSN1, he was diagnosed when he was 21, he is now 54, he is in a wheelchair
email me if you need more details

Here are some things that may help you.



Physical therapy. Physical therapy for CMT involves muscle strengthening and stretching to prevent muscle tightening and loss. A physical therapy program usually consists of low-impact exercises and stretching techniques guided by a trained physical therapist and approved by your doctor. Started early and followed regularly, physical therapy can play an important part in delaying nerve deterioration and muscle weakness before disability is present.
Occupational therapy. Some people with CMT may experience weakness in their arms and hands, causing difficulty with gripping and finger movement. Normal daily activities, such as fastening buttons or writing, can become difficult. Occupational therapy can help you deal with such challenges through the use of assistive devices, such as special rubber grips on doorknobs or clothing with snaps instead of buttons.
Orthopedic devices. Many people with CMT require the help of certain orthopedic devices to maintain everyday mobility and to prevent injury. Leg and ankle braces or splits can provide stability during walking and climbing stairs. Wearing boots or high-top shoes may provide additional ankle support. Custom-made shoes or shoe inserts may improve your gait. If you have hand weakness and difficulty with gripping and holding things, thumb splints may help.
Surgery. If the signs and symptoms of CMT become severe and other treatment methods don't help, surgery may be an option to reverse foot and joint deformities. Ankle surgery may stabilize the ankle or provide better distribution of weight. Foot surgery is discouraged if special footwear or supportive orthopedic devices can help instead.
Research continues to provide additional treatment options that might stop or reverse the effects of CMT. Studies are also under way to determine if CMT can be prevented. Future treatment may include the use of gene replacement therapy, which may involve delivering specific genes to certain cells and muscles, and using nerve growth factors, such as the hormone androgen, to prevent nerve deterioration caused by CMT. Other research includes treating CMT with stem cells. In recent laboratory experiments, scientists have found ways to turn stem cells into nerve cells and myelin-producing cells. It may be possible to use these cells to replace the damaged or diseased cells that cause CMT or to repair nerves damaged by the effects of the disease.