The viral excitement of the ice bucket challenge to benefit ALS has brought smiles to the faces of Renee and Jim Lamb. "It's pretty funny. It's amazing that it's gone so far," said Renee who was diagnosed with ALS twenty months ago. "The NY Jets have done it. Jimmy Fallon. It's good at least the name of it is getting out."
Family members have dumped the icy water over their heads to raise money in Renee's name. Yet, the efforts she and Jim appreciate the most are the ones that take the extra step to explain about the devastating nature of the disease. "We want people to understand that this is a real disease with real victims," said Jim who cares for his wife 24 hours a day. "It doesn't just effect Renee and I it effects our entire family."
We first met Renee Lamb in February. At the time she relied on a motorized wheelchair to get around the house and to medical appointments. She no longer uses the chair. She spends each day, all day in bed. The exception comes when her aide or her husband assists her in the newly built bathroom that was created out of a spare bedroom thanks to a generous donor.
As winter wound down and turned into spring the progression of Renee's illness was gradual. She and Jim traveled to Brooklyn to enjoy their son's wedding in April. In the weeks that followed the progression picked up. During a July visit to the ALS Clinic in Syracuse the medical professionals following Renee discovered she had lost 14 pounds. Her breathing capacity diminished to only 33 percent of normal.
" It's devastating. It's absolutely devastating to see someone you love diminish ," said Jim. In February, Renee was upset by not being able to hold her morning coffee cup. Now she can no longer use her legs or hold her Kindle in her hands. Six months ago she could sit up straight. Now she can not keep her head from tiling left even when in bed.
Shortly after the July doctor's visit the Lamb's decided it was time to get help from Hospice. The agency now provides 14 hours of care from an aide per week, one nursing visit per week and payment for all the medications needed to keep Renee comfortable. "This is where she is all day," explained Jim.. "Trying to make her comfortable as possible is my goal." Renee appreciates his commitment. She said, "he's the best."
Two years after the first heaviness in her legs, twenty months after the ALS diagnosis and six months since we last saw the Lambs they say they have found greater acceptance. Even as they enjoy watching people take the ice bucket challenge they'd like them to keep in mind the challenges and finality of ALS.