Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive, neurodegenerative life-limiting disease. ALS is a disease that weakens an individual’s muscles and impacts physical function such as walking, dressing, writing, speaking and breathing.
According to the ALS Association, a little over 5,000 people in the United States are diagnosed with ALS each year and it is estimated that there are at least 16,000 people who have the disease at a given time.
Unfortunately, there is no cure for ALS. Half of the individuals who are diagnosed with ALS live three or more years after diagnosis; 20 percent live for five years or more; up to 10 percent live more than 10 years.
During the ALS journey, especially during the end stage of ALS, there can be significant costs associated with ALS and the healthcare that is needed including medical care, equipment, medical staff visitation and more. Read on to learn more about how WV Caring, West Virginia’s leading hospice care provider, can help you talk through ALS, what we can do for you and to hear from an ALS patient’s family about hospice.
WHAT IS AMYOTROPHIC LATERAL SCLEROSIS
ALS is a neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons connect the brain to the spinal cord and the spinal cord to the muscles throughout the body. When the motor neurons die, the brain can not control movement, taking away an individual’s ability to write, dress, speak and eventually breathe.
There are two types of ALS: sporadic and familial.
- Sporadic ALS is the most common form of ALS; accounting up for 90 to 95 percent of cases. This type of ALS can affect anyone.
- Familial ALS is an inherited type of ALS; accounting up for five to 10 percent of cases.
Individuals who receive a diagnosis of ALS are typically between the ages of 40 and 70.
Symptoms of ALS could include:
- Mild symptoms: speech delays, weakness in the legs, involuntarily laughing, crying or yawning and coughing.
- Severe symptoms: symptoms have moved to other body parts, painful muscle cramps, paralyzed muscles and choking.
AS AMYOTROPHIC LATERAL SCLEROSIS PROGRESSES
As ALS progresses, there will be many decisions that will need to be made that will affect your quality of life. Having enough time to consider healthcare options, as well as to think about your end-of-life wishes can give you the peace of mind that everything will be okay. In the beginning, you should think about how you want to define your quality of life including your living situation, religious beliefs and how much independence you want to have or give up.
Understanding those things will give you the ability to:
- Decide on the care you’d like to receive
- Research treatments to decide what you want to explore
- Share your decisions with your loved ones
UNDERSTANDING HOSPICE CARE FOR AMYOTROPHIC LATERAL SCLEROSIS
As muscle and physical function begins to decline, and if you’ve been given a diagnosis of six months left to live, it may be time for hospice. Hospice care’s goal is to provide comfort, pain management and improve your overall quality of life so that you may spend time with your loved ones.
At WV Caring, our hospice care team is comprised of:
- Personal home aides
- Social workers
- Bereavement counselors
During the end stage of ALS, a hospice care team can:
- Answer questions about medical care and provide support 24 hours a day
- Provide pain management
- Help the family address emotional symptoms
- Deliver education and training to the caregiver so that they may understand the diagnosis, care plan, medications needed and medical equipment
HEAR FROM AN ALS PATIENTS FAMILY
Betsy Pyle’s husband, Jamie, an associate dean for medical education, was diagnosed with Lou Gehrig’s disease after noticing a change in his gate. The family knew there was no cure for this disease. Pyle and her son, Wesley, tried to be Jamie’s primary caregivers as it was important to the family to remain as a family unit in their own home; however, they needed a little bit of help.
“Hospice is really about living life to the fullest while you’re alive and not focusing on the end of life. All of the support services that I saw put into practice helped me and I know comforted my husband,” Pyle said. “Grief begins long before someone passes away, and it’s important to have that emotional and social support that WV Caring provides for the family, not just for the patient.”
“WV Caring provided the support that was needed, including giving advice on how to handle situations as they arose, the medication that was needed and visiting,” Pyle said.
HOSPICE CARE IN WEST VIRGINIA | WV CARING
At WV Caring, it is our goal to work with you to find the best solution. For many patients, the first question is often, “who pays for hospice?” Hospice care is 100 percent covered by Medicare and Medicaid, Part A, including medications, medical equipment and supplies that are related to ALS. WV Caring will work with you to meet your needs regardless of your ability to pay.
While there is no cure for ALS, the care and support that you receive can improve your quality of life so that you may spend that time with your loved ones.
We understand that this journey is hard. Our team understands. If you need hospice care, call us at 1-866-656-9790.