Scared and Worried (Aimee Chamernik: ALS)

Article Highlights:
  • Aimee Chamernik, of Grayslake, Ill., has amyotrophic lateral sclerosis and three children.
by Miriam Davidson on June 30, 2010 - 5:34pm

QUEST Vol. 17, No. 3

Aimee Chamernik, 40
Grayslake, Ill.
amyotrophic lateral sclerosis (ALS)

Aimee Chamernik was 33 and just beginning her third pregnancy when she noticed she was having difficulty enunciating as she read to her son at bedtime. “I thought it was odd, but I chalked it up to being tired after caring for two small children all day with a third on the way,” Chamernik says.

Chamernik mentioned the problem to her obstetrician at her next prenatal appointment, and was referred to a neurologist, who tentatively diagnosed her with myasthenia gravis, an autoimmune neuromuscular disease, and put her on Mestinon (pyridostigmine bromide). But when her speech continued to slur and deteriorate, and she noticed some weakness in her right wrist, she sought a second opinion. Further tests ruled out myasthenia gravis, and Chamernik stopped taking Mestinon.

Aimee and Jim Chamernik with their three children
Aimee Chamernik, husband Jim, and children Nick, Zachary and Emily. Chamernik began having ALS symptoms while pregnant with Zachary.

Throughout the rest of her pregnancy, Chamernik’s speech continued to slowly worsen, she began to choke more frequently, and her wrist weakness grew more pronounced. Chamernik suspected she had ALS; unfortunately, she was right.

Although her ALS was not formally diagnosed until a year after her third child was born, Chamernik spent most of her last pregnancy feeling scared and worried.

“It's easier now to look back and realize that ALS had little, if any, impact on my pregnancy,” Chamernik says. “However, at the time, I was awake late, late into the night a lot, worrying about my baby, crying about my other children possibly having to grow up without a mom based on what was happening to me, tormenting myself while researching the possibilities (which was a terrible idea, but one I couldn't seem to resist). I wish I hadn't wasted so much time worrying and crying — it didn't accomplish anything except making me lose sleep, and it didn't prevent my eventual ALS diagnosis.”

Chamernik had no problems with the labor and delivery of her third child. “One thing I wish I had understood better and believed more strongly is that the changes that were happening to me had little or no impact on my baby,” she says. “He grew and developed and hit every milestone, despite the weakening of my throat and mouth muscles. At the time, though, no amount of reassurance from doctors could ever truly allay my fears.”

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