Purcellville community rallies around family battling ALS
After several tests, at the young age of 43, he received a shocking diagnosis: he had ALS, also known as Lou Gehrig's disease, a progressive neurological disease with no known cure.
“At the time of diagnosis, the doctors tell you that you have about two to five years to live,” Michael's wife Dena Murray said.
The Murrays have two children, now ages 10 and 7, and this diagnosis “was the last thing we could have imagined,” Dena Murray said.
Two years after his diagnosis, in January 2015, Michael's condition took another turn for the worse when he was hospitalized with pneumonia and ended up with a tracheotomy to help him breathe.
“He decided to get the tracheotomy because he wasn't ready to die and wanted more time with his family," Dena Murray said.
Living with a tracheotomy and feeding tube is not easy – and the wife is a full-time caregiver from morning until night providing around the clock care.
Michael Murray is able to communicate through a special computer that detects his eye movements. Dena Murray said the process is slow, but it is a blessing that he can still “talk” with the help of technology.
Through this technology, Michael Murray wanted to share some thoughts about living with ALS:
“Physically what is difficult is I can't eat, I have a feeding tube protruding from my stomach where I get my medicine and liquid nutrients. I sometimes get jealous when other people are eating because I miss food. Because I have a vent to breathe, I am unable to talk. Where possible I use a computer that tracks my eyes allowing me to type to speak for me, it also allows me to surf the Internet. Without the computer, communication more difficult, in those cases we need to use a letter board.
"The hardest part of this disease is how it affects my family. Dena, my wife has to perform a lot of the nursing taking care of me. Sometimes we have more of a patient-nurse relationship not a husband-wife.
"As for my kids, Matthew who is 10 and , Madison who is 7 it is very difficult on both me and them. They get frustrated because I can't do certain things with them. Matthew won't play sports because daddy can't teach and play with him. Madison doesn't even remember daddy before the disease, we have to show pictures. It pains me that I am missing a big portion of their lives.”
The Murrays have found comfort and support within the community at the Purcellville Baptist Church, and their extended family is always supportive, she said.
“We have to rely on our small town and community. We can't do it alone. The church has been a great asset to us, and the congregation is amazing,” she said.
The Purcellville Baptist members helped re-fit their bathroom with a handicap accessible shower and vanity and they widened a few doors, she said.
The Western Loudoun Basketball League recently held a coaches tournament event for the family, raising $6,000 to assist with their financial needs and medical expenses.
“We went from being a typical family, and now it is really hard. It is a horrible disease that traps a normal person inside a body that cannot move or speak,” Dena Murray said.
For more information, visit http://www.michaelfightsals.com.
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