AMYOTROPHIC LATERAL SCLEROSIS
Understanding amyotrophic lateral sclerosis:
What is ALS?
ALS, also called Lou Gehrig's disease, is a progressive neurological condition that affects the nerve cells the, motor neurons, responsible for controlling voluntary muscles. Over time, these nerves to deteriorate and die, leading to muscle weakness, loss of movement and eventually difficulty speaking, swallowing, and breathing.
What is the cause of ALS?
The exact cause is unknown.
Most cases are sporadic, meaning they happen randomly without family history.
About 5 to 10% of these cases are the familial, meaning linked to inherited genetic mutations.
Researchers believe a combination of genetic, environmental, and possibly autoimmune factors might contribute to ALS.
How to manage ALS and possibly slow down progression.
Well there is currently no cure, several steps can help slow progression and improve the quality of life:
Medication which are FDA approved drugs may slow the diseases progression. Therefore take your medications as your doctor has ordered.
Physical therapy:
Physical therapy helps maintain muscle strength and prevent joint stiffness. Which will help improve your life.
Occupational therapy:
Occupational therapy assist with adapting daily activities to maintain Independence.
Respiratory Care:
Breathing exercises and devices may help the muscles necessary for respirations to retain strength. Therefore practice your cough and deep breathing exercises.
Nutrition:
Ask your home health agency if they have a nutritionist and/or a Speech therapist available, if they do not ask your doctor for one. They can help manage swallowing difficulties and ensure proper nutrition.
Emotional Support:
Counseling and or support groups for patients and family are important. Ask your home health agency if they have a medical social worker available to lead you to support groups.
When should you contact your home health care agency or doctor?
If you have new or worsening muscle weakness or difficulty moving.
Problems with swallowing or nutrition concerns. Noticeable weight loss.
Signs of respiratory issues like increase shortness of breath with activity or coughing.
Skin breakdown or sores from immobility such as pressure ulcers.
Falls with or without minor Injuries
Questions about medications or new symptoms that might arise.
Sadness that lingers, signs of depression.
Contact 911 if the following occurs:
Severe difficulty breathing or choking.
Sudden loss of consciousness or confusion
Chest pains or signs of a heart attack
Uncontrolled bleeding or injury
Severe falls or trauma
Helpful tips for patients and families:
Keep communication open
Encourage sharing feelings and concerns
Plan ahead. Discuss in advance care directives and Future Care preferences. Be sure to have a living will in place.
Use assistive devices, speech devices, wheelchairs, or feeding tubes that can enhance the quality of life.
Stay as active as possible mentally and physically. Engage in hobbies and social activities as much as possible.
Reach out. Utilize the community resources. ALS support organizations and counseling. Your home health agency should be able to provide you with the medical social worker.
If you or your loved one have any questions or need assistance your healthcare team is here to support you every step of the way.