Support Karen in Her Battle with ALS

As most of you know, our dear sister, Karen Evans, received a devastating ALS diagnosis in December 2023. Amyotrophic Lateral Sclerosis is a progressive neurodegenerative disease which damages motor neurons (the nerve cells that control voluntary movements), leaving the brain unable to control muscle movements. It is a brutal disease that leaves patients unable to walk or talk, and tragically, it ultimately affects their ability to swallow and breathe. Most patients retain their mental reasoning, fully aware of their increasing limitations. About 20% of ALS patients survive more than five years after the onset of disease.

Our family was blindsided by this diagnosis, as many ALS patients are; about 90% of cases occur without a family history of the disease. The cause of ALS is not well-understood, and there is no cure yet. Karen’s first symptom was muscle weakness in her arms. She was first diagnosed with bilateral carpal tunnel syndrome, and was planning to have surgery to treat this. In preparation for surgery, she was treated by additional doctors who identified that what she was actually dealing with was the onset of ALS.

By the start of this year, Karen had limited use of her arms, and was beginning to experience weakness and lack of coordination in her legs. Her speech has now slowed, and she relies on a wheelchair for mobility. Adding to the overwhelming struggles from this merciless disease, Karen has been a caregiver to her loving husband, Mike, who has suffered from Long COVID disease for years. Our nieces, Brittany & Savannah, are now in that role for both Karen and Mike, working overtime to tend to them, cook for them and feed Karen, and handle so much more than seems possible. These sweet girls are invaluable in Karen’s care.

With all the help afforded to them, there is still so much need for us to properly take care of Karen. Her most immediate needs are a hoyer lift and accommodations for her wheelchair. We’re hoping to modify the bathroom of their home for handicap usage, as it doesn’t currently meet her needs. Team Gleason has graciously assisted in banking her voice, and we’re waiting to find out if they’ll be able to support her with a speech generating device. If they aren’t able to provide one, we’ll be searching for a communication device for her.

Adding to the difficulties, Karen and Mike have both been unable to return to work, due to their health conditions. Each of them has worked for St. Tammany Parish schools for about 20 years. They miss their students and colleagues, and we all wish that they had the option of returning to their jobs, but neither is able to do so.

We’re hopeful that with additional support, we’ll be able to provide what’s needed for us to improve Karen’s quality of life as much as possible. We want for her to be comfortable and safe, and we want her caregivers to have what’s needed for them to be safe as well. We hope and pray that Karen will be able to continue to communicate with us – to make her needs known, but also because we cannot imagine life without her sense of humor, her kindness, and her loving spirit. Our sister has always cared for us and shown us more love than we can ever return. We want to give her all within our power to help her to survive this dreadful disease. We are immensely appreciative of any help you’re able to provide. Most of all, we ask for your prayers and your best wishes for Karen.

– Tracey Scharf & Liz Garver