Hospice and Neuromuscular Disease

Honey Goodman
Comm. Relations Director

Knowing when to seek Hospice services when you have a neuromuscular disease can be difficult because the way these diseases progress can differ greatly.

It is never too soon to begin the conversation with your Neurologist or call a Hospice company for a consultation. It is important to remember that there is no limit to how long individuals can receive hospice services as long as they continue to be medically eligible. One of the major eligibility requirements is the rapid progression of the disease which would include some of the following symptoms: going from independent ambulation to wheelchair or bed-bound, progression from normal speech to barely intelligible, progression from normal diet to a blenderized diet and requiring assistance in all activities of daily living. Your physician or the hospice agency will also be evaluating if there has been critical nutritional impairment, recurrent pneumonia, decubitus ulcers or urinary tract infections in the last several months.

Many people are afraid when they hear the word “hospice”. But once you have experienced it firsthand you will know how remarkable the service can be. Death and dying are topics that are difficult for most people. Generally speaking, however, people express a desire to be in control of their lives, especially when they are facing a critical illness. Unfortunately, because many individuals avoid the topic; they do not know that Hospice can put them in control of the care they receive. Remember, electing a hospice benefit does not mean you are giving up hope. Hospice is all about hope. The earlier that individuals receive hospice services, the more effective it can be. Hospice helps individuals and their families to cope with living and dying with a neuromuscular disease.

Do You Suffer from Two or More of these Symptoms?

• Progression from independent ambulation to wheelchair or bed bound
• Progression from normal to blenderzied diet
• Supplemental oygen required at rest
• Continued weight loss
• Recurrent aspiration pneumonia

To learn more you can simply dial the word HOS-PICE spelled out on your telephone pad.