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In hindsight, there were other signs and symptoms that were disguised as the normal aging process - fatigue, weight gain, etc. If we could pin point that first sign, it would have been back in Spring of 2014 - MJ had been working out more, trying to get back into shape, but no matter how much she worked out she wasn't gaining any muscle mass. She also noticed her left leg was heavier than her right when on the treadmill. She was always a morning person, and all of the sudden just couldn't get going like normal. Then one day in May 2014 she slipped and fell on a wet step at her house. She landed on her bottom and broke a toe. A month later she started having pain in her shoulders and neck. After 7 months of hurting, she had an ACDF (Anterior Cervical Disk Fusion) surgery. After the surgery, MJ's voice started to sound hoarse and raspy and never returned to her normal sounding speaking voice. She'd also occasionally choke on saliva but just thought it was another side affect from the surgery. By June 2015, she noticed her arm strength had significantly decreased while out kayaking, but again thought she was out of shape. Work became difficult - sitting for too long, walking across campus and the constant pain. In June 2016 MJ retired from the University of Memphis after over 30 years of service.
In September 2016 MJ was diagnosed with amyotrophic lateral sclerosis (ALS) or Lou Gehrig's Disease which it is commonly known. ALS is a disease that sneaks up on you slowly out of nowhere. After a year and a half of missed signs, thinking old age was to blame, test after test, it was concluded after a muscle biopsy in her thigh that MJ had ALS. It's a neurodegenerative disease of unknown cause that breaks down tissues in the nervous system and affects the nerves responsible for movement. It is not at all what any of us wanted to hear or even imagined we'd hear. It's also a clinical diagnosis which means it cannot be determined from one simple test, but rather multiple tests ruling out everything from Lyme Disease to Parkinson's and everything in between. We'd all hoped for something manageable, something that could be treated and cured over time. ALS is a fatal disease. We don't know how long we have with MJ, but we do know we want every single minute with her to count.
In October 2016 MJ was able to travel to the Mayo Clinic in MN to meet with some of the best doctors in the country who specialize in ALS research and diagnosis. They did confirm her diagnosis, conducted a sleep study and got her bi-Pap breathing machine ordered, as well as gave her full access to that team of doctors any time she needs it. She has a great team of doctors here in Memphis that she is also working with as well and we hope to keep her quality of life as good and as manageable as possible.
While we all feel helpless, defeated and depressed, it's nothing to what MJ is living with day in and day out. Simple tasks like walking her dog, driving her car, running quick errands have become impossible for her alone.
To describe her in one word - GENEROUS. She is generous with her time, with her heart, with whatever she has - she's always given us, her family and friends, more than we deserve and for that and so much more - MJ is a rare treasure. We all hope to give back to her what she has so graciously given to others: love, support, encouragement, prayers and as much time as possible.
This caring bridge blog will serve to update friends and family on the current status of her disease and her life coping with it. It will also allow us to update those who wish to help in any way, know what is still needed.
Thank you for loving my Aunt MJ and keeping her in your prayers. She is a special person who means the world to our family and so many special friends.