Over the past year, Mary’s health has been changing and declining, with symptoms that could not be explained by the fibromyalgia and rheumatoid arthritis she had already been diagnosed with. Last fall, we were suspecting that she might have MS. We spent several months with lots of doctors’ appointments and tests. The MS tests and most other tests came back negative, but the EMG tests showed that she has a motor neuron disease known as amyotrophic lateral sclerosis (ALS aka Lou Gehrig’s Disease). This is a degenerative disease that causes the nerves running from her brain to various muscles in the body to die and the muscles to atrophy. Mostly the muscles affected have been her left side: leg, torso, diaphragm, arm/hand, and neck. She is being seen at the ALS Clinic in Portland, where they have an amazing team of specialists.
Her muscle atrophy has progressed to the point that she is now using a power wheelchair to get around. She is also using a neck brace since the muscles on the left side of her neck are atrophying. She is having to learn to do things right-handed, which is a challenge. Because her diaphragm is affected, her breathing has been compromised and she is using an AVAPS machine 24/7 as a non-invasive ventilator. She recently had surgery to get a PEG (feeding tube) – which she does not yet need since she is still able to eat normally; but we were concerned about waiting for the surgery due to the dangers of anesthesia with her compromised lung function. Fortunately, she was approved for 40 hours a week of in-home health care, so that I can continue to work without worrying about her safety. Right now, she is doing as well as she can be.
I will try to keep you updated, but with the care she needs, it is difficult for me to keep up with everyone. Phone calls are difficult, but please feel free to email me any time, and I will answer the best I can.