Amyotrophic Lateral Sclerosis (ALS)
More information about Sean & his family:
http://www.collinsfuneralhome.com/collins-sean-w |
How I Was Impacted By ALS: My cousin, Sean Collins, was diagnosed with ALS in March 2012. A former Marine, he was fortunate to have care through Veterans Affairs towards the end of his life, as well as a large group of supportive family and friends. Sean died on 7 May 2013. A public service announcement video that he made is featured to the left.
In performing my research for this project, I discovered that military members are TWICE as likely to develop a motor neuron disease, like ALS, than the general U.S. population. This is a public health issue that is gaining exposure lately through social media and ALS chapter websites, such as those listed below. More video links that may be of interest:
Research from Project ALS: https://www.youtube.com/watch?v=OMVkuVdwBoA San Antonio Veteran with ALS: https://vimeo.com/112357028 |
Want to Know More About ALS? Read Below or Click on Any of the Links/Pictures for More Info
General Information:
Disease name: amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease
What is it? “A rapidly progressive, invariably fatal neurological disease that attacks the nerve cells responsible for controlling voluntary muscles. The disease belongs to a group of disorders known as motor neuron diseases, which are characterized by the gradual degeneration and death of motor neurons.” (source: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm)
What are the symptoms? “ALS causes weakness with a wide range of disabilities. Eventually, all muscles under voluntary control are affected, and individuals lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fall, people lose the ability to breathe without ventilatory support.” (source: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm)
Survival rate: “Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10% of those with ALS survive for 10 or more years.” (source: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm)
Incidence/Prevalence: “More than 12,000 people in the U.S. have a definite diagnosis of ALS, for a prevalence of 3.9 cases per 100,000 persons.” (source: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm)
How is ALS diagnosed? “No one test can provide a definitive diagnosis of ALS, although the presence of upper and lower motor neuron signs is strongly suggestive. Instead, the diagnosis of ALS is primarily based on the symptoms and signs the physician observes in the patient and a series of tests to rule out other diseases. (source: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm)
Common diagnostic tests that may be performed include: --Electromyography (EMG)- a special recording technique that detects electrical activity in muscles --Nerve conductive study (NCS)- measures electrical energy by assessing the nerve’s ability to send a signal --Magnetic resonance imaging (MRI)- a noninvasive procedure that uses a magnetic field and radio waves to take detailed images of the brain and spinal cord… can reveal evidence of other problems that may be causing the symptoms (source: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm) |
Research, Support, & Local Information:
National Organizations for more information on ALS:
Walk to Defeat ALS (R)- The ALS Association’s biggest annual event, which raises funds that allow local chapters to sustain care services and support research for much of the next year. (http://www.walktodefeatals.org/)
SAN ANTONIO WALK: SATURDAY, 24 OCTOBER 2015 Texas Chapter of ALS Association: http://webtx.alsa.org/ San Antonio ALS Resources: --ALS Chapter: http://www.alsforums.com/support/usa-tx-san-antonio.html#als-chapter-0 --ALS Clinic: http://www.alsforums.com/support/usa-tx-san-antonio.html#als-clinic-1 or http://www.alsforums.com/support/usa-tx-san-antonio.html#als-clinic-2 Support Group Resources: --Support Group (local resource): http://www.alsforums.com/support/usa-tx-san-antonio.html#other-3 --Support Groups In Texas-- http://webtx.alsa.org/site/PageNavigator/TX_8_SupportGroups.html --Support Groups- Search throughout the United States: http://www.alsa.org/community/support-groups/ Who can be affected? “ALS is one of the most common neuromuscular diseases worldwide, and people of all races and ethnic backgrounds are affected. ALS is more common among white males, non-Hispanics, and persons aged 60-69 years, but younger and older people also can develop the disease. Men are affected more often than women.” (source: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm)
How do you get it? --90-95% of all ALS cases occur at random with no clearly linked risk factors -- 5-10% of all ALD cases are inherited, usually a mutation on a gene from one parent passed down (source: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm) |
Common treatments?
--riluzole (Rilutek)- approved by FDA and used since 1995
--all other treatments are used to relieve symptoms and improve quality of life as best as possible, including medications, physical and speech therapy, and nutritional support
--eventually, when the muscles of respiration become too weakened, ventilatory assistance may be used. Social workers, home care assistants, and hospice nurses can be involved to assist the patient and the family more at this stage of disease progression.
--riluzole (Rilutek)- approved by FDA and used since 1995
--all other treatments are used to relieve symptoms and improve quality of life as best as possible, including medications, physical and speech therapy, and nutritional support
--eventually, when the muscles of respiration become too weakened, ventilatory assistance may be used. Social workers, home care assistants, and hospice nurses can be involved to assist the patient and the family more at this stage of disease progression.
Key ALS Research Findings
·1993: scientists supported by the National Institute of Neurological Disorders and Stroke (NINDS) discovered that mutations in the gene that produces the SOD1 enzyme were associated with some cases of familial ALS
o since then, over 12 additional genetic mutations have been identified
· 2011: Scientists found that a defect in the C9orf72 gene is not only present in a significant subset of ALS patients but also in some patients who suffer from a type of frontotemporal dementia; provides evidence for genetic ties between these two neurodegenerative disorders
· The role of environmental factors, such as exposure to toxic or infectious agents, as well as physical trauma or behavioral and occupational factors, are being studied as a contributor to ALS development
o Studies of populations of military personnel who were deployed to the Gulf region during the 1991 war show that those Veterans were more likely to develop ALS compared to military personnel who were not in the region
(source: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm)
·1993: scientists supported by the National Institute of Neurological Disorders and Stroke (NINDS) discovered that mutations in the gene that produces the SOD1 enzyme were associated with some cases of familial ALS
o since then, over 12 additional genetic mutations have been identified
· 2011: Scientists found that a defect in the C9orf72 gene is not only present in a significant subset of ALS patients but also in some patients who suffer from a type of frontotemporal dementia; provides evidence for genetic ties between these two neurodegenerative disorders
· The role of environmental factors, such as exposure to toxic or infectious agents, as well as physical trauma or behavioral and occupational factors, are being studied as a contributor to ALS development
o Studies of populations of military personnel who were deployed to the Gulf region during the 1991 war show that those Veterans were more likely to develop ALS compared to military personnel who were not in the region
(source: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm)
Where Can I Go to Seek Additional Research?
http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6307a1.htm
http://www.alsa.org/about-als/who-gets-als.html
http://www.alsa.org/als-care/resources/publications-videos/factsheets/epidemiology.html
http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm
http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6307a1.htm
http://www.alsa.org/about-als/who-gets-als.html
http://www.alsa.org/als-care/resources/publications-videos/factsheets/epidemiology.html
http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm