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5 Facts Families Living with ALS Should Know

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Home Care in Monticello FL: 5 Facts Families Living with ALS Should Know

ALS stands for Amyotrophic Lateral Sclerosis, but the disease is perhaps best known by its other name—Lou Gehrig’s disease, after the famous baseball player who was diagnosed with the disease during the 1930s. Approximately 6,000 people are diagnosed with ALS each year in the United States, and around 20,000 Americans are currently living with ALS. ALS is a neurological disease that affects the nerves that control voluntary muscle movement. If your loved one has been newly diagnosed with ALS, arming yourself with knowledge about the disease can help you and your family navigate the days ahead. Here are five facts about ALS to help you begin building your knowledge base.

 

#1 90% of ALS Cases Are Sporadic

One of the first concerns many family members have about ALS is that it may be hereditary, which means they could also be diagnosed with the disease. Fortunately, ALS is nearly always sporadic. This means that it is a disease that affects people randomly and generally does not run in families. There are instances in which the disease runs in a family, but this accounts for only between 5 and 10 percent of cases. Hereditary cases of ALS are caused by a genetic mutation.

 

#2 Life Expectancy is Variable

The average life expectancy for a person diagnosed with ALS is three to five after symptoms first begin to appear. However, the disease varies from one person to the next. About 20 percent of people survive for five years. 10 percent live 10 years after diagnosis, and 5 percent live 20 years or more. The life expectancy of a person does not have to define the quality of life they lead. People with ALS have written books and made other significant contributions to the world and their families. Famed physicist Stephen Hawking is an excellent example of someone who has continued to live his life with purpose despite a diagnosis of ALS. He’s also an example of the life expectancy being variable since he was diagnosed at the age of 21 and is now in his seventies.

 

#3 The Disease Does Not Always Progress in a Straight Line

People with ALS often have periods of time in which there is little or even no progression at all. The disease moves at different rates for different people. In fact, it’s even possible to see improvements at times, but these are usually temporary.

 

#4 Research Is Being Conducted

Doctors and scientists continue to research ALS and possible treatments for the disease. Researchers are looking at genetic factors that influence the disease as well as searching for new and better treatments. People with ALS can help with research efforts by getting registered with the National ALS Registry, which collects information and statistics about people with ALS. They can also participate in clinical trials for new treatments and medications.

 

#5 Help is Available

If someone in your family has been diagnosed with ALS, you are not on the journey alone. Your loved one’s medical team will help them through the process, offering assistance and treatment along the way. When your loved one’s disease progresses to a point where they need more help, you may wish to hire a home care provider through an agency. Home care providers can be hired for just a few hours per day up to live-in care, so you can increase the amount of help you receive as it is needed. Home care providers can assist your loved one with daily living tasks, like bathing, dressing, and eating. They can also help with household chores and provide transportation to appointments.

 

If you or an aging loved one are considering home care in Monticello, FL, please call the caring staff at Hopewell In-Home Senior Care today at 850-386-5552. Providing Senior Care Services in North Florida.

 

Sources:

http://www.alsa.org/about-als/facts-you-should-know.html

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-Lateral-Sclerosis-ALS-Fact-Sheet

http://kidshealth.org/en/kids/als.html

https://www.scientificamerican.com/article/stephen-hawking-als/

 

Brian Moran, RN, Marketing Director, Partner

Marketing Director, Partner at Hopewell In-Home Senior Care
Brian Moran, RN is both a Partner and Director of Marketing for Hopewell In-Home Senior Care. Brian has worked at the Bellevue Hospital in NYC, Tallahassee Community Hospital, Select Specialty Hospital and has over 12 years’ experience as a home health care nurse at American Home Patient. Since joining Hopewell In-Home Senior Care in 2008, Brian has used his knowledge of health care and local resources to help seniors in Tallahassee, FL navigate the medical resource maze. His goal is to assist seniors and their families by increasing awareness, affordability and quality of in-home caregiver services for those who wish to age in place.

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