Jeanine has always been a vibrant person, who is full of personality and loves to socialize. The last thing her daughter, Claire, had ever expected was for her mother to develop ALS, but when Jeanine began having difficulty speaking in 2019, their family began seeking answers.
The Onset of ALS
During a family trip to her mother’s homeland, France, in 2019, Jeanine began speaking slowly and quietly. At the time, the family thought she was just experiencing issues with acid reflux, but when her speech continued to deteriorate, they decided to seek help from a neurologist.
“They ruled out a stroke, did brain MRIs, and started going through the process of elimination.” Claire said about the process of getting a diagnosis, “This was between September and November of 2019, and over this time period, her speech was getting slower, more slurred, and harder to understand. They thought she might have something dementia related.”
After the doctor ruled out any cognitive impairments, he suggested that Jeanine see a neurologist in an ALS clinic. The family would have had to wait months to get an appointment at UT Southwestern’s ALS clinic, so they began to search elsewhere. Through family physician connections, Jeanine was able to get an appointment with the Cleveland Clinic’s ALS specialist within a few weeks. After additional testing there, it was confirmed that Jeanine had a form of ALS called bulbar ALS.
After receiving the diagnosis, the family got in contact with the ALS Association of Texas for assistance and resources.
“At that point, it was still so early in the disease’s progression that you still have this false hope that it’s going to be fine and nothing is going to progress. Bulbar ALS has a shorter life expectancy than the more typical ALS, so typically it’s a 2-3 year life expectancy. At the time when she was diagnosed, she could still do so many things and had no physical or gross motor impairments, so despite that prognosis, we thought she would be fine.” Claire said about the period after her mother was diagnosed.
Team Toujours Provence Joins the Walk to Defeat ALS
Following her mother’s ALS diagnosis, Claire reached out to friends who had experience with the disease. They told her about the Walk to Defeat ALS, and encouraged her to get involved.
“We need something to do. We are there as much as we can be, but I felt like we need to help raise awareness and raise money for research and a cure for ALS. I’ve been reading about medicine that is hopefully on the cusp of helping future ALS patients, so I feel like we need to do something for the community to contribute to those efforts,” she said.
The family picked the team name Toujours Provence to honor Jeanine’s favorite place and things. Jeanine moved to America from France in 1969, and has a love of lavender fields, wine, cheese, and all things French. The name translates to ‘always Provence’ because Jeanine’s heart will always be in her beautiful homeland.
The whole family has rallied with Jeanine and gotten involved with the walk; Claire’s 10-year old daughter even wanted to make special t-shirts for the team! Claire is excited to be part of the community during walk and be with other families who are also dealing with ALS.
“ALS is one of those things that you don’t know about or understand much about it until it affects you personally. It took me a while to understand what ALS is. It’s very confusing, and you’re looking for an answer of why it’s happening. I think it’s been eye opening for our family and close friends to learn about ALS is and the cruel impact it has on its victims and families. Getting involved in the Walk has given us something actionable that we feel like we can do because we have no control over the disease. I think it’s important to the community, and I’m really excited to go do the walk and be with other families and see people who have gone through the same thing.”
Sadly, Jeanine passed away on Saturday, October 2 of 2021, after her strong and courageous battle with ALS. The disease spread quickly over the preceding weeks to where Jeanine could no longer walk, sit up, or use her hands, while being aware of it all. Claire, her family, and Team Toujours Provence will be walking in memory of Jeanine and are committed to continuing their efforts with the ALS Association of Texas.
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