Judith Carol (Margheim) Bohlin
January 28, 1944 - August 4, 2021
Judith had been involved in the HDSA LA Chapter for at least 30 years of her life, beginning in the late 1970’s. She served in various capacities until she became disabled herself with frontotemporal dementia sometime around 2005.
Judith’s involvement with HDSA LA began after her middle daughter, began to show signs of Huntington’s disease. After her diagnosis they would later find out that her youngest son also carried the gene and that, unbeknownst to them, her husband Gerald had inherited the gene from his father and probably his grandfather as well. Her oldest daughter would remain at risk for the disease until the age of 27, when testing revealed that she did not carry the gene.
Judith accepted the challenge of caring for her family members with grace, compassion, and determination. She lovingly took care of both her daughter and son at home until their deaths at the ages of 16 and 21; and her husband for many years until he was eventually placed in a state hospital. She remained involved with the management of his care until he, too, passed away at the age of 55.
Not much was known about Huntington’s Disease in the 1970’s, when Judith’s journey began, so she was a pioneer of sorts when it came to learning all the ins and outs of dealing with the various symptoms associated with both the juvenile and adult forms of the disease. For much of her life she sought to learn about the myriad of medications and treatments that were used for persons with HD as she tried to make her loved ones lives as productive, comfortable, and joy-filled as possible despite the disease with which they were afflicted. As she learned which medications and care-giving techniques were helpful, as well as those that were actually harmful - she pursued taking up the task of educating others, including medical personnel. She arranged, and conducted, trainings at local care facilities to help educate staff as to how to manage the many needs of those, with Huntington’s disease, that were placed in their care. She spoke at various conferences, schools, and support groups. In addition to this, she fulfilled various roles on the HDSA Los Angeles Chapter board of directors; facilitated support groups; led a “walk on the hill” in DC; acted as a technical advisor to actors who portrayed individuals with HD; organized various fundraisers; wrote the chapter newsletter; attended state coalition meetings and numerous national conferences; and much more. Judith’s service to others is characterized well in this quote by Sheryl Sandberg,
“Leadership is about making others better as a result of your presence and making sure that impact lasts in your absence.”
Judith made a difference in the lives of many families, caregivers, and persons affected by HD.
In 1997 Judith married John Bohlin (who also had several family members who had been affected by HD.) Even though Huntington’s Disease was no longer a part of her own life, she and John both continued to work to promote fundraising efforts which aided in locating the gene and hopefully, one day, a cure. Judith continued to serve faithfully as a support group moderator and ran a telephone hotline for the HDSA Los Angeles Chapter until she began having memory problems. She was later diagnosed with dementia around the age of 66 which led to her own gradual physical and mental decline until she passed away on August 4, 2021.
Judith’s legacy of love and commitment for both her family, and others, affected by Huntington’s disease will live on in the hearts of those who knew and loved her; as well as in the many whose lives were touched by her strength and efforts.
“I was asked whether talking about my family past and my losses was too painful or emotional. That’s always a little difficult to answer. Of course, going thru it was painful, and so the memories are not entirely pain free. But, it seems the greater loss would be in not sharing some of those experiences with others that are going through similar happenings, and perhaps feelings, with the hope that sharing some of those things and feelings I experienced might shine a little light into some of the corners shadowed by the unknown, for them- and for me, make return visits to those ‘corners’ a little less dark, as well.”
She did indeed shine that light.
Thank you for your donation in her memory.
Lyndy Downs, Judith’s daughter
on behalf of the family