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By Oscar J. Groebl, Jr.

I came to know Janet Lee Claus after her diagnosis of MSA. Janet was my aunt-in-law. I was already familiar with Parkinson’s from being a caregiver and POA for my cousin.

Janet was already showing signs of the devastation of MSA but was still able to live at home with the help of a caregiver and friends. It was clear, however, that her independence was quickly leaving. Moving into a facility was approaching quickly.

Finally, it was necessary to make the move. The process of closing Janet’s home and holding her estate sale made it clear what Janet had lost to MSA. The amount and variety of art supplies and craft materials, combined with half-finished projects and the completed works of art showed that MSA had robbed us of a true genius.

Janet insisted that we take some of her materials and tools with her into the facility. She was determined that she could still express herself and undertake small projects.

Sadly, Janet would never be able to put her creativity and skills to projects again.

The progression of MSA in Janet was overwhelming. Each day showed greater loss of her creativity and skills, but also the basic skills of life. Eventually Janet slipped into a coma, needing oxygen, and then finally admitted into hospice. Janet passed away quietly around 11 PM on Sunday, November 13, 2022.

I had the honor of holding Janet’s hand, speaking softly to her about her meaningful life, reassuring that her parents were welcoming her to join them. Janet’s last breath was peaceful and welcomed. I felt happiness for her but was selfishly sad to lose her.

The most meaningful, yet difficult task came the next day when I went back to the facility to gather Janet’s few remaining belongings – her few pieces of jewelry, family photos, craft supplies Janet was never able to use, and a few pieces of clothing.

The amusing part was finding dozens of bags of peanut butter cups. Janet lived on them toward the end. Peanut butter cups and Coke-a-Cola kept her going and brought Janet joy.

We all know that life is short and bitter-sweet, but experiencing what I did with Janet turned what I “knew” into what I “feel.” The personal impact of Janet’s MSA-related death was enormous. I will never be able to forget that life is truly short and bitter-sweet!

MSA is a cruel and unforgiving disease. It impacts far too many bright, loving, and talented people. Whatever any of us can do to contribute to MSA research is important.

Janet herself made a big contribution to that effort with her donation of brain tissue to the University of Maryland Brain and Tissue Bank to help understand and eventually develop treatments for MSA.

I personally encourage us all to do what we can so that others, maybe even ourselves, can be saved from facing Janet’s conditions and fate. Janet suffered much but left behind so much. For what Janet left behind, I am personally grateful.