Cazenovia couple living with ALS faces physical and financial challenges
Renee Lamb wheels herself around the house in a motorized chair. She's enduring a rough Central New York winter mostly watching the snow fall from the sliding glass door of the family room. Her life just two years ago now seems a world away. She and her husband Jim were living in North Carolina. Enjoying the warm weather in a place they would one day retire. That's when she felt the first symptom of the incurable disease ALS.
"I was doing jazzercise. My right foot started to be clumsy," said Renee. "I felt like I was going to trip." She was 54 years old. She ate right. She exercised. She danced. Renee was a new grandmother to young Parker. She thought she turned her ankle. Soon she needed a cane for support. Her doctors started to do tests. ALS or Lou Gehrig's disease is diagnosed by exclusion of all other possible illnesses.
Blood tests, X-rays, MRI's, CT scans ruled out illnesses like stroke, Multiple Sclerosis and Lyme Disease. The conclusion: Renee's doctor told her she has Amyotrophic Lateral Sclerosis. She knew nothing about ALS. "I got all the brochures and the manuals," said Renee. "Life expectancy two to five years." She cries as she recalls her coming face to face with her sudden mortality. "That was the hardest thing to hear," she said.
Less than two years after her foot felt clumsy her legs no longer support her weight. Her husband Jim lifts her to transfer her from bed to chair, from chair to commode. She no longer has private time. She rarely has a moment alone. "The loss of independence is hard on me. I really can't do anything on my own," Renee explains as she begins to cry again.
There is no cure for ALS. There is no cocktail of medications that make it go away. After initially being treated at the ALS Center at Wake Forest Baptist Medical Center in Winston-Salem, North Carolina Renee's care resumed at the ALS Center at Upstate Medical University when the Lamb's returned home to Central New York to be closer to family.
The ALS Center in Syracuse is the only center of care and research in Upstate New York that is certified by the ALS Association. That makes it a magnet for the Upstate chapter's 233 clients across a 42 county region. Sadly, in that same region in the last year 66 ALS patients have died. There is a no chance of survival.
The only hope currently comes from increased funding for research. Congress just approved $14 million in aide for research. The National ALS Registry is supporting 30 drug research projects and 25 research projects investigating the potential causes of ALS, according to the ALS Association.
Renee Lamb hopes she can be entered into another trial at the ALS Center at Upstate in Syracuse. Dr. Jeremy Shefner was pleased with the slow progression of her illness during a visit in late January. He leads a multi-disciplinary team that treats ALS patients and studies their disease. They try to offer hope to patients, but know they cannot offer a cure.
"ALS is like an insurmountable bully that just keeps coming by your house and keeps tormenting you and the torment gets worse and worse over time, " said Jim Lamb seated in the couple's family room on a snowy afternoon in Cazenovia. He added, "You're absolutely bewildered to stop it."
After a career of managing restaurants across the country Jim took a job with food services at nearby Morrisville State so he would have more time and flexibility to care for his wife. He is her caregiver 16 hours a day. The other 8 hours a dedicated aide comes to the house to help Renee. Insurance does not cover paying for the help in the home.
The Lamb's pay the aide 75% of Jim's weekly take home pay. There will come a time when it not longer make financial sense to go to work. "If they would provide even a portion of the payment for home health care that would relieve such a burden off our shoulders. This is a very expensive disease to maintain," said Lamb.
The cost in dollars is nothing compared to the devastating toll on Renee's body. Each ALS patient experiences the illness in their own individual way. When asked if she had advice for anyone being diagnosed with ALS, such as the world heard in the best selling book "Tuesday's with Morrie" Renee said, "advice, good luck." She struggles for a positive lesson to share with others. Ultimately she admits support groups have helped. It helps to know you're not alone, despite living a lonely life lacking independence.
On this snowy day Renee says it's getting harder to hold her cup of coffee. Her legs went first. Her hands and arms are next. Her speech has only marginally changed. Knowing the progression will not be stopped brings those simmering tears back to the surface. Her husband tries to keep them focused on the next task of the day because thinking about the days to come is too much to bear.
A fund has been set up to help with the cost of caring for Renee Lamb and modifying the family's home. You can contribute here.
Credit needs to be given to two Ithaca College student producers who profiled the Lamb's struggle with ALS in the fall of 2013. Katherine Blidy and Brienna Bard produced "Pledging Forever" as a thesis documentary. Clips from their work were included in the television stories aired on the stations of CNYCentral.