Bulbar ALS Patient Finds Comfort and Care at Martinsburg VA Hospice Unit

Bulbar onset ALS is a type of amyotrophic lateral sclerosis (ALS) that affects the muscles in the face, neck, and throat. Symptoms include slurred speech, difficulty swallowing, weakness in the face, atrophy in the tongue, and excessive choking. There is a rapid disease progression, with paralysis leading to death from respiratory failure. Palliative care and working with a multidisciplinary team of healthcare professionals can help preserve quality of life.

After eight days of extensive blood and muscle testing, a spinal tap, and multiple MRIs, I was diagnosed with Bulbar ALS at Johns Hopkins Hospital in Baltimore on July 18.  Bulbar ALS is a cruel, fast spreading, and devastating disease.

My wife and daughter worked diligently to get me the resources necessary to combat this debilitating illness. When I was accepted to reside in the CLC A/Lighthouse Hospice Unit (33 miles from home), my family breathed a sigh of relief, knowing they could finally relax because I would be receiving excellent hospice care.

I entered the Martinsburg VA Medical Center, Community Living Center, CLC A/Lighthouse Hospice Unit on November 4. The following remarks of appreciation are passed with respect to my experience as a patient.

The doctors and nurses at the CLC are committed to making quality end-of-life care available to individuals and families facing serious illness. The staff believes that the final stages of a person’s life should be lived with the greatest degree of comfort, and dignity. The hospice allows me to be in control of my own life by remaining as independent as possible in making decisions. The staff honor patient, and family choices, and address the individual needs of those they serve. Management of pain and symptoms are addressed and closely monitored so patients live as fully and comfortably as possible in an end-of-life scenario.

I do not consider Hospice as a last resort. The CLC promotes a home-like environment with residents allowed to have their own furniture, radio, and wall hangings. Bulbar ALS is a progressively terminal illness without a cure; however, CLC hospice professionals have methods to control pain, reduce anxiety, offer spiritual and emotional support, and improve my quality of life.

I appreciate the skilled physical, occupational, and speech therapists, the nutritionist, and recreation and facilities representatives. All are reassuring and helpful in their competence, sensitivity, and caring support. The caregivers who bathe, shave, dress, and arrange my meals, go above and beyond to make me feel comfortable with loving hearts and hands. I am grateful for the opportunity to be taken to Sunday worship service and Monday Bible Study.

It is the people in this hospice unit who have fostered this beautiful atmosphere, people who have committed their lives to helping and loving others, allowing the sick to maintain their minds, dignity, and self-worth. I truly believe that the treatment I am receiving from the CLC has assisted in relieving my families physical and emotional stress.

I am giving thanks to God for calling and empowering such wonderful people to perform this crucial vocation.

Mark Gunderman
Stephens City, VA