Former competitive swimmer races against the clock for a cure for ALS
LEXINGTON, Ky. (WTVQ) – 67 year old Sandra Marlowe was once a true competitor in the water, an award winning swimmer. Now, she’s racing against a different clock living with Amyotrophic Lateral Sclerosis. The same disease that ended the life of a famous american athlete. June 2nd of 2021. the MLB named the day Lou Gehrig Day, 80 years after his death. While this was a milestone in the ALS community’s push for a cure, Marlowe fears she wont live to see one. Sandra’s husband, Dr. Wayne Marlowe, says people with his wife’s form of ALS, Bulbar, can expect to live just 27 months after diagnosis. It slowly takes away a person’s ability to speak, swallow, walk, even breathe.
“Nowadays I don’t have the lung capacity to be as active as I used to be,” explains Marlowe.
Her tongue is mostly paralyzed, which makes it hard to understand her, especially for her young grandchildren. She doesn’t manage her saliva well so it triggers coughing, and requires family members to pat her back to help her breathe throughout the day. Marlowe was first diagnosed in March 2020, though Sandra says she knew something was wrong months before.
“Eating a piece of cake, my airway closed down and it took several minutes to recover,” remembers Marlowe.
Sandra can still speak, however she’ll need the help of technology called augmentative and alternative communication.
“This helps some but has limitations. I miss being able to initiate or respond in conversation,” says Marlowe.
If Sandra loses movement in her fingers she’ll then eventually have to communicate with her eyes.
“Sometimes I wake up and I think I’m going to hear my sweet wife’s normal voice and I don’t, says Dr. Wayne Marlowe, Sandra’s husband.
For six months, Sandra participated in the clinical trial of a new medication called Zilucoplan through the Healey ALS Platform Trial, based out of Boston Massachusetts General Hospital. Sandra says it’s not just to help herself.
“I really wanted to use it as a chance to help others,” says Marlowe.
Sandra also takes an FDA approved drug called Riluzole. Taking this drug could only mean extending her life three months, still nothing is certain..
Which is why the Marlowe’s find every opportunity to be together, or at least a chance to be close by.
Right now, Sandra continues to take the clinical trial drug, Ziluoplan. At this point, there’s no evidence that shows the drug will prolong life, ALS researchers will evaluate the results from clinical trial patients like Marlowe before the end of the year. To learn more about ALS or to donate towards a cure, click the link here.