The ALS Association

ALS Ice Bucket Challenge Progress

Wayne Harris, Uxbridge, Massachusetts

Massachusetts Chapter

Many would deem Wayne Harris a “pioneer” in his battle with ALS.  Although the fatal, neurodegenerative muscular disease prompted Harris to leave his job as an occupational therapist in May 2010, he has helped to establish improved care for others with Lou Gehrig’s Disease.  Doctors diagnosed Harris with ALS in May 2010.

Wayne
Wayne and Eileen Harris

For its annual “ALS Across America” campaign during May, which is ALS Awareness Month, The ALS Association’s Massachusetts Chapter is honoring Harris and his wife and caregiver, Eileen. 

“Through his efforts and with Eileen’s support, Wayne has been able to have his respiratory and mobility needs met in a way that best suits him,” said chapter Care Coordinator Michele Chmura.  “He has challenged the way people with ALS are treated by refusing to settle for the status quo.”

Having worked as an occupational therapist for 15 years, Harris understands that people with diseases or illnesses often require a specific course of care to remedy or alleviate symptoms associated with their ailments.  Eileen similarly recognizes this because she works as a speech and language pathologist at Life – Skills, Inc. in Webster, Massachusetts.  Due to their experiences in their respective professions, the couple has convinced both medical staff and insurance providers to see individuals with ALS as having unique and specific needs. 

Chmura sees Harris’ endeavors as having a positive, long-term effect on families coping with Lou Gehrig’s Disease.  “Wayne’s efforts have set precedents which will likely benefit others in the future,” she said.  “I believe he is paving the way for an improved standard of care and accessibility for individuals with ALS who choose to live in their own homes through the course of their illness.”

Harris’ diligence has assisted him in adapting his house to suit his physical needs.  Instead of accepting his insurance company’s denial for his request for a lift system to get him out of his power wheelchair and into a bath tub, he studied the reasons for the denial, then carefully detailed his needs.  He received documentation from medical professionals that justified and verified the necessity for the lift equipment, which enables him to bathe in his own home.   

“Bathing is much more preferable to sponge bathing for health reasons, and it also improves a person’s sense of well-being,” said Chmura.

The couple has also used a significant amount of their personal savings to improve their home’s accessibility because health insurance does not cover all the modifications Harris would like done to his dwelling.  Aside from getting the lift system installed, they have added a stair lift and entrance and exit ramps so Harris can leave his house via his power wheelchair to attend appointments.

Chmura said Harris and Eileen will continue to educate medical professionals about the importance of quality of life issues for families fighting Lou Gehrig’s Disease during May and throughout the rest of the year.

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