In 1980 I had an accident while doing an emergency escape procedure on a Boeing 707 in the Air Force. I ended up hurting my back, my lumbar muscles, and created a path for degenerative disc disease on my spine. I went through 2 surgeries on my spine. In 2017 I was having extreme problems with walking. I would fall for no explainable reason. In 2018 they discovered that I had sIBM.
It is an enlightening journey that I’m on with this disease called Myositis. The move to Tucson was to get connected with the VA hospital who has done everything possible to make my life better. They put in an overhead lift system that gets me from my wheelchair to the bed to the bathroom. They now have designed a wheelchair that will meet my needs and be a lot more comfortable than the one I currently have. All of this is good; however, currently there still is no cure for this disease. If you could find it in your heart too give to the myositis foundation perhaps scientist and researchers will come up with a cure In the future.
Sporadic Inclusion Body Myositis
Sporadic inclusion body myositis (sIBM) is the most commonly acquired myopathy in patients over the age of 50. More men have inclusion body myositis than women, and the disease is rarely seen in people younger than 50 years of age.
Inclusion body myositis is unlike all other forms of myositis in terms of symptoms, treatment, and who it affects. Symptoms of inclusion body myositis progress more slowly than the other types of myositis with weakness increasing gradually, sometimes over years. For this reason it is not uncommon for patients to realize that they had been experiencing symptoms for many years before they were diagnosed.
Sporadic Inclusion Body Myositis Symptoms
The following are common symptoms of sIBM:
Frequent falls
Difficulty walking
Trouble climbing stairs or standing from a seated position
A foot that seems to drop when walking, causing tripping
Weakened hand grip and difficulty flexing the fingers
Difficulty writing, manipulating keys, and other daily activities
Weakness and noticeable shrinking of the quadriceps (main muscle of the thighs)
Weakness in the forearm muscles
Pain or discomfort as muscles weaken
Difficulty swallowing
Some of the first signs of inclusion body myositis are falling, difficulty getting up from a chair, and weakened grip. Muscles most often affected are those at the front of the thighs, those that elevate the feet, and those in the hips, fingers, wrists, upper arms, shoulders, neck, back, and, less often, in the face. Many IBM patients notice shrinking (atrophy) in the arms and thighs as the muscles become weaker. Trouble swallowing, or dysphagia, is a common problem for patients with sIBM as well.