Lisa Spaid lost her battle to CJD on December 2, 2021, at the age of 60. She bravely fought for over a year, with signs of the disease starting to show in October 2020.
Prior to her illness, Lisa lived a vibrant life full of many loving friends and beloved family. She worked as a legal assistant and bartender for nearly 30 years, and was a fully independent, successful, strong woman. When she began having trouble sleeping, typing at work, or buttoning up her shirt, she thought something might be wrong. It wasn't until she had a few serious falls that loved ones insisted she needed to get to the bottom of what was happening.
After seeing many specialists who performed test after test, one of Lisa's doctors mentioned to a family member that this might be a very rare, terminal illness called CJD. We prayed for answers, fearful, but not without hope. After performing a spinal tap and waiting for the results, doctor's finally delivered the devastating news - Lisa had CJD, and only months to live.
Quickly, friends and family flew to be at her side. And just as quickly, the disease progressed. Lisa had trouble sleeping, was experiencing delusional thoughts, was forgetful and often confused and angry. Her mobility and independence faded fast. From needing just a shoulder to lean on, to a cane, a walker, and then a wheelchair, we tried to keep up, but quickly realized we would need more help.
Lisa was placed on hospice in April of 2022 and fought the disease from the comfort of home as long as possible. By summer, it was apparent that a care facility was the safest, best option. Although she could no longer move freely or speak, Lisa would light up when seeing her many visitors. She could communicate with a few blinks of the eyes, or with her well-known, beloved giggle. She found joy in visiting with friends, who brought sweet treats, painted her nails, or did her hair. Many happy memories were formed in the care facility, as her support team and amazing nurses rallied around her in those final months.
In the last week of Lisa's life, she was not as spirited. She had a flat affect, and seemed to be losing lots of weight and eating less. Family surrounded her with love in those final days, even preparing a huge Thanksgiving feast with champagne and pumpkin pie. We sat outside her care facility under the beautiful blue sky and oak trees, sharing one last holiday together. Lisa blinked "I love yous" and snuggled with her beloved dog one last time, and then she knew it was her time to go. Although she fought and cried and screamed nearly to the end- she wanted so badly to live - her dear friends, younger brother, and father surrounded her with peace and love, staying at her side until she took her final breath.
Lisa's friends and family found comfort and support throughout her illness from the CJD Foundation, through support groups, information and resources. We joined the foundation's Kansas City Strides event to honor Lisa and all those who have lost their battle to CJD, and to raise awareness and funds to find a cure for this devastating disease.