‘My family’s battle with ALS’
By: By Julie Martin
“Julie, I think I’m dying,” said my husband, Scott Webb of Martin. He had pain in his spinal column, but I thought it was from a fall he had sustained years earlier at work.
His pain continued for several weeks until we finally went to the doctor. The news we received a week before Christmas in 2004 forever changed our world. Scott had been diagnosed with ALS. Commonly known as Lou Gehrig’s disease, ALS is a progressive, degenerative and fatal neuromuscular disease that strikes down even the healthiest men and women in their prime.
To make matters even worse, at the time we had a three-year-old daughter, Caroline, and I had just found out I was pregnant with twins. Our excitement of the pregnancy was quickly diminished with the prospect of Scott not being around to see them grow up.
Scott quit work immediately, since his walking had become affected and his job required physical activity. While I worked, Scott would spend his days with Caroline — watching her grow up and cherishing every moment.
The twins were born in 2005 and we were immediately overwhelmed. While Scott was a great help at feeding and burping them, he was not physically able to care for them the way a father wants to.
The following year, we moved from Columbus, Ohio to Martin so that Scott could be closer to his family. About this same time, Scott started using an electric wheelchair.
He is still able to spend time with his family and his children, but he’s progressively getting worse. He recently lost the ability to walk and can no longer use his left hand (his right hand is also getting weak). His breathing and speaking are still fine, but it’s only a matter of time.
We try to keep life as normal as possible for the children. This year, we took the kids on vacation to Gulf Shores, Ala., and they all had a ball. We also became grandparents last winter.
Jackie, Scott’s daughter from a previous marriage, had a little boy, Dylan. We visit our friends and family in Ohio whenever we can.
Scott still does yard work and we have the prettiest garden on our block. He spends time with his children and his family. In spite of the fact that we’ll never have a “normal” family situation, we are still happy.
We would like to thank the ALS Association, Tennessee Chapter, for all of their support. The organization has given us equipment, respite funds and have been helpful in every way possible.
Walk to D’Feet ALS
The ALS Association, Tennessee Chapter is a non-profit organization solely focused on providing comprehensive resources to ALS patients and their families in a community setting.
The organization is dedicated to helping patients face this devastating disease with dignity and a positive spirit. The Tennessee chapter provides leadership in raising awareness, patient advocacy and funding research to find a cure for ALS.
The organization’s 6th Annual Walk to D’Feet ALS will be held Saturday, Oct. 20.
Registration will take place at 10 a.m. at Audubon Park located at 4161 Park Avenue. The Walk begins at 11 a.m. and is wheelchair accessible.
With a full range of services, including home visits, equipment loan programs and respite care, we would love to help if you and your loved ones are struggling with ALS. Please visit http://alstn.org for more information or contact our West Tennessee area Patient Services Coordinator, Linda Gilbert, at 901-309-1078.
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