The Society for Muscular Dystrophy Information International (S.M.D.I International) is a registered Canadian charity founded in 1983 by us, to provide a non-technical worldwide information links via publications and now this web site, for neuromuscular disorders (NMD's) patients and organizations.
James has a type of slowly disabling neuromuscular disorder - Myotonic dystrophy (weakness of all muscle groups accompanied by delayed relaxation of muscles after contractions, affects face, feet, hands and neck first. Progression of the adult type is slow, sometimes spanning 50 to 60 years). Depending on the type of NMD, symptoms can be from mild to severe with a shortened life expectancy.
Knowing personally the feeling of devastation and emotional isolation of being diagnosed with an incurable rare disorder, we wanted to learn what was being done worldwide about NMD's. Unable to find information or addresses in Canada, we wrote 1,000 letters to 128 countries. We were amazed, enlightened, and helped to find so many wonderful people and organizations publishing books, magazines, reports, funding research, providing client services and education concerning the different NMD's.

• To link people with people and organizations concerned with their disorder
• To share information to help people help themselves
• To create public awareness of neuromuscular disorders/disabilities and the world's organizations and support groups for the disorders.

1. S.M.D.I.International Newsletter - A publication by and for those concerned with muscular dystrophy or the allied disoders
2. ACCESS - ABLE INFORMATION -a semi-annual disability information resource publication.

3. and now this web site

To us the topic of respiratory insufficiency is of personal interest, it can be life threatening to those like myself (James) who have a NMD. Alterations in respiratory function are frequent in NMD's, whether mild or severe seems to depend on the severity of the disorder. Our interest in this topic increased since James underwent knee surgery in January 1992 during which he stopped breathing, due to respiratory insufficiency, brought on by anaesthetic complications and his myotonic dystrophy. This occurred even after early notification of the anaesthetist of his myotonic dystrophy and possible complications. Due to the respiratory insufficiency life slowly became a constant struggle with increasing fatigue, lack of energy, memory lapse, waking at night gasping for breath, sleepiness to the point of unknowingly dozing off during conversations.
After a visit to a respiratory specialist, blood work, pulmonary study and sleep study, it was found that James had sleep apnea. He says "To sleep, I now use a BiPAP S/T positive pressure ventilatory assist device with a nasal mask. The help this provided was nothing short of amazing! I was now able to wake up feeling rested, able to stay awake all day without feeling tired and sleepy all day - a most positive increase in my quality of life as well. Tests confirmed I also now have a heart conduction defect".

Check out Anaesthetics (SMDI Online) Making Breathing Easier and Heart Check.

Our frightening experence has reaffirmed our belief - learn all you can about neuromuscular disorder/disability complications, the life you save might be your own.

Our aim for this site is to simplify your access to useful, reliable disorders/disabilities information without you or us becoming Internet roadkill, lost on the www roads of links to everywhere and nowhere, and suffering from information overload.