Amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s disease, is a nervous system disease that attacks nerve cells called neurons in your brain and spinal cord. The disease is progressive, meaning the symptoms get worse over time. Currently, there is no cure for ALS and there is no effective treatment to halt, or reverse, the progression of the disease.

The Symptoms

Signs of ALS can appear gradually. You may notice a funny feeling in your hand that makes it harder to grip objects. Or, you may start to slur words before any other symptoms show up. Each person with the disease feels different symptoms.

Some common early symptoms include:

  • Stumbling;
  • A hard time holding items with your hands;
  • Slurred speech;
  • Swallowing problems;
  • Muscle cramps;
  • Worsening posture;
  • A hard time holding your head up;
  • Muscle stiffness.

Stages of the Illness

In the early stages of Lou Gehrig’s disease, symptoms can be subtle, and some patients may ignore them. As ALS progresses, patients continue losing the ability to perform basic tasks. Eventually, patients reach a stage where they can no longer sit, stand or move without support. Breathing may require respiratory devices. The final stage of ALS is the death of the patient, usually within five years of diagnosis.

When is it time to contact Capital Caring?

End-stage ALS can involve a slow decline in functionality for a patient. If your loved one is wheelchair or bed-bound, has lost speech abilities, requires major assistance when eating or doing other normal activities, and does not wish to be dependent on feeding tubes or placed on a ventilator, hospice care may be the next step for ensuring a pain-free and dignified dying process. Hospice care is a good option to provide caregivers with additional support in the home or a long-term-care facility. Hospice care is appropriate for an ALS patient diagnosed with six months or less to live if the disease continues its usual progression.

Benefits of Hospice and Palliative Care at Capital Caring

The goal of hospice care for ALS patients is to treat pain and other symptoms and relieve the physical and emotional stress to help ensure the greatest level of comfort for our patients and their families. Capital Caring’s dedicated team perform regular evaluations and provide assistance to those living with ALS. This evaluation looks at the physical, mental and emotional state of the patient and updates the care plan to best alleviate symptoms and suffering.

The following services for ALS patients are provided by Capital Caring:

  • Capital Caring will care for a patient whether they remain at home or reside in an assisted living facility, nursing home or other long-term care center.
  • Our team of hospice workers are dedicated to reducing the physical pain that those living with ALS may experience, such as stiffening of joints, spasms in major muscles and inability to move freely. They strive to make the patient as comfortable as possible through a comprehensive pain management system.
  • Hospice offers emotional and spiritual support as well. Long-term ALS patients may experience anxiety and depression or even dementia that makes managing the disease more difficult. Our hospice team helps the patient manage emotions to increase well-being.

Every aspect of the patient’s care is organized and coordinated between hospice care worker and the patient’s doctor or neurologist. A team manager oversees every aspect of the care and makes sure everyone, such as the physician, clergy and social workers, is on the same page when it comes to the best interests of the ALS patient. Hospice also handles obtaining medical supplies, equipment and medications necessary for the patient’s care and comfort.

Visit capitalcaring.org or call 800-869-2136 for more information or to make a referral.