Making the most of every day

Howard Cty family deals with heartbreak of ALS

Ellicott City, Maryland - The string of cool summer days has been perfect for Myrna Malveaux. They allow her to spend her afternoons on her deck  poolside, surrounded by family and friends.

Her daughter, Suzette Malveaux, says it's one of her favorite spots, allowing the sun to shine brightly on this wife and mother of four, warming her heart that still beats with fire and vibrance while she battles the crippling effects of ALS.  

"We try to have fun every day," Suzette Malveaux said. "People really tend to gravitate toward her. I think they feel better about themselves when they are around mom and in her presence."

That presence Suzette Malveaux talks about can be seen in family photos and video where Myrna was always more than happy to share her spirit to those around her, often serving as the life of the party.

"She loved to dance and kind of draw and bring the best out of everyone," Suzette said.

But Myrna's husband,  Dr. Floyd Malveaux, remembers things for his wife started to change in late 2011.

"She had nvoluntary movement of muscles," he said. "She had difficulty swallowing at that time. She had lost some weight and had some falls."

In November of that year, the Malveaux's went to Johns Hopkins for a battery of tests. Dr. Malveaux said shortly after, he was approached by a specialist about the probable diagnosis.

"He took me aside to a little room. It was almost like a closet.  I'll never forget it," Dr. Malveaux said. "He said, 'I want to talk to you because I think I know what's going on. I think Myrna has out ALS.'

"I remember him telling me, 'This is going to be very difficult for you, but it's going to be even worse for her,'" he added.

ALS, often referred to as Lou Gehrig's disease, is a neurological disorder that attacks the nerve cells in the brain and spinal cord. Over time, the patient will lose all motor functions, including the ability to speak, eat and breathe.

"That progression was very quick.  It happened in the span of two years," Suzette said.

So with limited time, Myrna and her family decided to make the most of every day. They made lists of things she wanted to do and immediately began marking them off.

"When we first got a diagnosis, mom and I started doing all kinds of stuff like Zumba and bellydancing," Suzette said. "At the end of dance class she would go to sidebar and teach the instructor the Four Corners."

One of the family's more memorable adventures came when Myrna got the chance to fulfill a dream and get behind the wheel of a big rig. "She was driving around, honking the horn and trying not to hit my dad," Suzette said.

Sadly, time and ALS eventually caught up with Myrna. She now must spend her days in a motorized wheel chair, relying on a touch pad to communicate.

That still hasn't stopped her from finding time to dance when she can. She can also be seen giving her grandchildren rides around the backyard. 

Myrna and Suzette even testified before the FDA for better patient access to treatment for ALS.

"I think we're cherishing every moment right now," Suzette said. "It's just for us to remember mom and remember her spirit, but when the day is said and done, she still my mom and I need her."

"The hardest part is seeing the changes that have occurred in her and limited her ability to live a full life," Dr. Malveaux said. "You have to the know the most difficult part is knowing what's coming down the line."

But "down the line" doesn't matter right now. Instead it's all about this moment and whatever moments may come for Myrna and her family because that sun still shines brightly, and she still has road left to travel.

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