Care Services FAQ, Part 2

The care services team at the St. Louis Regional Chapter are the forefront of knowledge and information on ALS and what it looks like to live with the disease in our region. They answer questions from people with ALS and their families on a regular basis as they meet with families at clinics or during home visits. A few months ago, they answered some common questions they receive. Here is Part 2 of those FAQs.

What is this disease going to look like for me?

ALS looks differently for each person depending on the type of diagnosis and how quickly the disease progresses. Although we have general information about the disease that can determine what it will look like, there are many unexpected variables.

ALS is typically a disease that involves a gradual onset. It is not uncommon to have periods lasting weeks to months where there is very little or no loss of function. There are even very rare examples in which there is significant improvement and recovery of lost function. These ALS “arrests” and “reversals” are unfortunately usually transient. Less than 1 percent of patients with ALS will have significant improvement in function lasting 12 months or more.

Will my kids get ALS?

About 5-10 percent of ALS diagnoses are familial, passed down through family members, with the other 90-95 percent of ALS diagnoses are sporadic, developing randomly in individuals. The family history is currently the best way to determine if it’s possible for the disease to be inherited. Genetic testing is available, but limited and should be accompanied with a family history. It’s very common to have limited information on one’s family, but most families can still be reassured as the majority of instances of ALS are not hereditary.

If I am married why do I need to complete an Advanced Directive, can’t my spouse just tell them?

Advance directives are legal documents that convey how you want to be cared for if you’re unable to make medical decisions or express your wishes, the three main types including a living will, a durable power of attorney for health care, and a do not resuscitate (DNR) order.

If a person with ALS does not complete advance directives, the decision falls to loved ones who may not know what their person with ALS desires for their end of life. It can be hard to think about the future and end of life choices, but it prevents putting loved ones in a difficult position of making those decisions and puts them at peace that the right choice was made.

Learn more about filling out advance directives: http://www.alsa.org/als-care/resources/fyi/planning-for-the-future.html

Why is my healthcare team recommending hospice? I don’t feel I’m ready.

Certain symptoms can be indicative that a person with ALS can consider hospice, especially discontinued use of a feeding tube or breathing machine. Hospice care provides services to make that time is spent comfortably and that the quality of life for the individual with ALS is held to the upmost importance. Hospice can also relieve caregivers of their responsibilities, which can become increasingly difficult as symptoms progress. However, even if a healthcare team recommends hospice, it is up to the individual with ALS and family members to determine what option to go with.

Are there nursing homes who specialize in ALS? Are there nursing homes that take vent-dependent patients?

Depending on which state you live in, there may or may not be nursing homes specialized in ALS. As a person with ALS and their family are searching for nursing facilities suitable for their needs, there are some important questions to ask, like if they’ve had experience with people with ALS before and how they manage pain control and symptom control. Learn more about nursing facility considerations here: http://web.alsa.org/site/PageServer?pagename=STL_Nursing_Facility

If you or someone you know has ALS, or, if you’d like to learn more about how you can support families battling the disease, please visit our website at www.alsa-stl.org.

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