May is ALS Awareness Month

May is ALS Awareness Month

May 1, 2018 12:00 pm Published by

May is ALS Awareness Month. ALS (amyotrophic lateral sclerosis) or Lou Gehrig’s Disease is a nervous system disease that affects muscles by weakening them and overall inhibits physical performance and function. ALS is a neurological disease that affects the nerve cells or neurons in the brain, which ultimately control voluntary muscle movement. This includes basic activities like walking, talking, and chewing food. Because this disease is progressive, that means symptoms worsen over time, and there is no cure for nor treatments to stop or reverse the effects of ALS. Let’s look at how this disease progresses, whom it affects, and options for independent living:

How ALS progresses

Early symptoms of ALS include, but are not limited to,:

  • Muscle twitches
  • Muscle cramps
  • Slurred words and nasal speech
  • Trouble chewing and swallowing food

ALS can first appear in the hand or arm when the individual has trouble performing simple tasks, such as writing or buttoning a shirt. Other early signs can be detected in the legs, say, if an individual has trouble walking or if they trip and stumble easily. Over time, regardless of how ALS originates, muscle weakness spreads to other parts of the body until, eventually, the individual is no longer able to stand up, walk, or get in and out of bed on their own. Their only mode of transportation is a wheelchair.

Whom it affects

The CDC estimates that there are between 14,000 and 15,000 Americans living with ALS. Worldwide, ALS affects people of all ethnic backgrounds. Symptoms develop around the ages of 55-75, although there are several cases in younger individuals, and we see that ALS affects men slightly more than it does women. Between 5-10% of all cases of ALS are genetic, meaning that it’s in your DNA and you get it from one or both of your parents. Even if they don’t have the disease, your parents may have been carriers, which means they have a heterogeneous copy of the disease-causing allele. However, around 90% of all cases are sporadic, meaning that it occurs randomly, even if there is no family history of the disease. 

Independent Living Options

Although living independently with ALS is hard, there are ways to do it, and it beats living in a nursing home. Of course, independent living is not for everyone; it depends on each person’s needs with respect to their specific disease, condition, or diagnosis. With ALS, younger people choose to live on their own from fear of losing independence, while older people choose to do so from fear of losing privacy by living in a nursing home. If you feel you are ready for living independently, there are some things you will need to consider. First is finding good, competent home health aids. Next, will you automatically transition to machines for mechanical ventilation for example? Another thing to consider is finding and funding accessible housing so you can literally live on your own. Yet another is how you will manage your finances as the disease progresses. There are many more things to consider, but these are just a start.

 

While learning of a recent diagnosis is scary, there are steps you can take to prepare yourself for the road ahead and, many times, there are options for independent living. Contact the Independent Living Center of the North Shore and Cape Ann by phone at 978-741-0077, or visit our website at https://ilcnsca.org/.

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This post was written by Sperling

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