The Nervous System - ALS
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The Nervous System - ALS
- 1. Team E Debbie Fernando Alicia Shumpert Candace Hume Vashona Mack HCS/551 February 24, 2014 Dr. Donna Fife The Nervous System Amyotrophic Lateral Sclerosis
- 2. Nervous System Central Peripheral ALS (Lou Gehrig's Disease) Motor neuron disease Rapidly progressive Attacks neurons - control voluntary muscle Upper and lower motor neurons die No communication between nerves and muscles Diaphragm and chest wall muscles – no movement Death Familial tendency
- 3. 5600 new cases annually 30,000 in US 60% Men 93% Caucasian Men more commonly affected (changing) Most develop between ages of 40 to 70 Most Common over 60
- 4. US and England have highest rates (Italy & Poland the lowest) International numbers may be affected No racial or ethnic traits Occurs as much as MS No cure
- 5. Physical disability involving all limbs (Phelps, 2006) Increased muscle weakness Ineffective speech(Phelps, 2006) Voice changes Slurred speech Difficulty swallowing (Phelps, 2006) Difficulty breathing (Phelps, 2006)
- 6. No Cure Hospice Care/Home Health Care Pharmacotherapy Riluzole
- 7. Lose muscle strength entire body(Young and McNicoll, 1998) Unable to communicate. (Young and McNicoll, 1998) Inability to swallow. (Young and McNicoll, 1998) Unable to breath
- 8. Survival rate 3-5 years Age at diagnosis Gender Quick diagnosis from onset Extremities vs. face Death
- 9. Cannot swallow Drooling Choking Cannot communicate with speech Difficulty in rising from seat to stand Difficulty in walking
- 10. Regular Exercise Diet Increase social activities Weight maintenance
- 11. Usually maintain mentalities throughout Speech Therapists Adaptive Therapies Mental Evaluations Assistive Devices Counseling or Therapy
- 12. Packard Center The ALS Association Muscular Dystrophy Association International Alliance of ALS/MND Association
- 13. ALS Therapy Development Institute Mayo Clinic Clinical Trials Fundraisers Social Media
- 14. Support groups Financial assistance Hospice Preparation for end of life
- 15. ALS-motor neuron disease Rapid progression No cure Statistical data Symptoms Prognosis
- 16. Questions ???
- 17. ALS Association. (2014). Who Gets ALS? Retrieved from http://www.alsa.org/about-als/who-gets-als.html ALS Therapy Development Institute. (2014). The ALS Community. Retrieved from http://www.als.net/ALS-Community/ Amyotrophic Lateral Sclerosis Fact Sheet. (2014). Retrieved from http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm Dalsgaard, M. K. (2006). Fuelling cerebral activity in exercising man. Journal of Cerebral Blood Flow and Metabolism, 26(6), 731-50. doi:http://dx.doi.org/10.1038/sj.jcbfm.9600256 Fabrega Jr., H. (1977). CULTURE, BEHAVIOR, AND THE NERVOUS SYSTEM. Annual Review Of Anthropology, 6419-455. International Alliance of ALS/MND Associations. (2014). Background. Retrieved from http://www.alsmndalliance.org/about-us/ Lifetips. (2014). The Epidemiology of ALS. Retrieved from ALS Tips: http://als.lifetips.com/faq/113659/0/what-are-the-incidence-and-prevalence-rates- of-als/index.html
- 18. Mayer, J. D. (1981). GEOGRAPHICAL CLUES ABOUT MULTIPLE SCLEROSIS. Annals Of The Association Of American Geographers, 71(1), 28-31 Mayo Clinic. (2014). Amyotrophic lateral sclerosis. Retrieved from http://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral- sclerosis/care-at-mayo-clinic/why-choose-mayo-clinic/CON-20024397 MDA/ALS Magazine. (2014). Factors in Survival. Retrieved from http://alsn.mda.org/article/factors-survival MDA: Fighting Muscle DIsease. (2014). Speech and Communication. Retrieved from http://mda.org/publications/everyday- life-als/chapter-6 Meisler, J. (2001). Toward Optimal Health: The Experts Discuss Epilepsy. Journal Of Women's Health & Gender-Based Medicine, 10(7), 621-625. doi:10.1089/15246090152563498 Packard Center . (2014). ALS Facts and Statistics. Retrieved from Living with ALS: http://www.alscenter.org/living_with_als/facts_statistics.html
- 19. Phelps, J. (2006). Inflammatory enzyme modulates motor neuron damage in Amyotrophic Lateral Sclerosis. Environmental Health Perspectives, 114(12), 697 Pratt, A. J., Getzoff, E. D., and Perry, J. J. P. (2012). Amyotrophic lateral sclerosis: Update and new development. Degenerative Neuromuscular Disease, 2, 1-1 Rowland, L. P. (2001). Medical Progress - ALS. Retrieved from http://isites.harvard.edu/fu/docs/icb.topic1303034.files/case%2 03%20-%20suppplemental%20Readings Young, J. M., and McNicoll, P. (1998). Against all odds: Positive life experiences of people with advanced Amyotrophic Lateral Sclerosis. Health and Social Work, 23(1), 35-43.
Editor's Notes
- The nervous system is made up of both the central (brain and spinal cord) and peripheral (nerves leading from the spinal cord to the rest of the body). Amyotrophic Lateral Sclerosis (ALS) is a motor neuron (nerve cell) disease. “Motor neurons are nerve cells located in the brain, brain stem and spinal cord that serve as controlling units and vital communication links between the nervous system and the voluntary muscles of the body ("Amyotrophic Lateral Sclerosis Fact Sheet", 2014, para 2). ALS is a rapidly progressive disease. When messages are sent from the motor neurons of the brain to the spinal cord, they do not reach the muscles. These neurons die and are unable to carry the message. Therefore there is no communication between what the brain is telling the muscle to do and what it is actually doing. The muscles never receive the message and therefore do not move. The muscles then atrophy. Early symptoms may be muscle weakness which can be contributed to many diseases. By the time the degenerating neurons sent to the diaphragm and chest wall muscles die, there is nothing to move the diaphragm or chest wall muscles resulting in slowing and finally no respirations resulting in death. Most people with ALS maintain their mental facilities throughout. Near the end, they may show signs of depression or decrease in cognitive functioning. ALS has been seen in people of the same family.
- Amyotrophic Lateral Sclerosis (ALS) is a disease that know no geographic boundaries. It affects people all across the United States and over the world . The newest estimate is that there are 5,600 new cases each year in the United States and a breakout of about 15 cases per day (ALS Association, 2014). The statistics further show there are about 30,000 people in the United States currently affected with ALS (ALS Association, 2014). ALS Association is a major proponent of ALS research and care and they track ALS patients in a database and their number show that 60% of those affected are men and 93% of the patients are Caucasian (ALS Association, 2014). From the data the current numbers show that more men are affected by ALS than women, however that data is slowly changing and more women are being diagnosed with ALS (Packard Center , 2014). The most common occurrence and diagnosis is between the ages of 40 to 70, however ALS can affect people of any age (Packard Center , 2014). The most common age of diagnosis is over 60 as ALS seems to develop as people age (ALS Association, 2014).
- The United States and England have the highest incidents of ALS worldwide. From the research Italy and Poland currently have the lowest incidences of ALS (Lifetips, 2014). The International Alliance of ALS/MND Associations is an international group that tries to tie together support, research and awareness of ALS across the world (International Alliance of ALS/MND Associations, 2014). Some issues that may cause the numbers to be higher for the US and England are the issue that many foreign health systems do not have adequate resources to diagnosis and treat ALS (International Alliance of ALS/MND Associations, 2014). These resources include doctors and other health professional with the knowledge to treat and care for patients with ALS (International Alliance of ALS/MND Associations, 2014). ALS does not typically only strike one ethnic group or race. It can be diagnosed across all racial, ethnic and socioeconomic groups worldwide (Packard Center , 2014). The occurrence rate for ALS is lower than that of Huntington’s disease but about the same as Multiple Sclerosis, both are other neuromuscular diseases (Packard Center , 2014). Currently there is no cure for ALS and it is responsible for 5 out of every 100,00 deaths in people over 20 (Packard Center , 2014). Images courtesy of bing.com
- According to Phelps (2006), “ALS, the most common adult-onset paralytic disease, is most commonly diagnosed in middle age, and affects men more often than women. Patients gradually lose the ability to speak, swallow, and move voluntarily” (p. 697). This disease effects the muscles which can cause death due to not being able to breath and swallow. Amyotrophic Lateral Sclerosis is most commonly known as Lou Gehrig's disease. With this disease the nerve cells die and therefore are no longer able to send signals to the muscles. Since the muscles are weakened the individual is no longer able to move their extremities. Over time the condition is worsened as the individual is no longer able to move the muscles in their chest area making it difficult for them to breathe. Heredity is a risk factor for ALS and other causes of the disease are still unknown. Typically, this disease impacts older adults aged 50 years and older however younger individuals can be affected as well. Classic signs of ALS are difficulty swallowing and breathing. A person may also experience drooling and chocking. Other signs are muscle weakness when lifting from a chair, climbing stairs or walking. Slurred speech and other voice changes are symptoms of ALS. The patient eventually is unable to breath on his own due to no movement in the chest wall or diaphragm. The final result is death.
- There is no treatment or cure for ALS. The only medication approved by the FDA is Riluzole. In one trial, the medication seemed to prolong life by 3-6 months. In another trial, treatment slightly slowed the decline in the strength of limb muscles. The patients in the trial remained in a milder stage of the disease than the control group. To the patients, however, the effects were invisible. (Rowland, 2001). Also, according to Pratt, Getzoff, and Perry (2012), “The drug is thought to preserve motor neuron function by decreasing toxic glutamate levels at glutamatergic nerve terminals by (a) inactivating sodium channels, (b) inhibiting glutamate release, and (c) blocking postsynaptic actions of NMDA receptors” (p. 8). Individuals with this disease can use hospice care or home health care as a choice for treatment. According to Pratt, Getzoff, and Perry (2012), “The primary goal of ALS treatment is the inhibition of disease progression, although an important secondary consideration is the treatment of damage already done. Palliative care (eg, home care and hospice) remains a significant focus of the treatment program for the ALS patient” (p. 8). The use of hospice care or home health care can ensure that the patient is receiving the proper medical treatment during their last moments of life. Images courtesy of bing.com
- According to Young and McNicoll (1998) “Although there are few diseases as devastating, many people with ALS have a positive toward their circumstances” (p. 35). Even though it is said, after being diagnosed with ALS a person’s average life expectancy is 3 years. Also, there is ongoing research for ALS; however, there is no current treatment to cure or slow down the process of the disease. The person starts by having slurred speech, drooling, choking and general muscle weakness. He is unable to rise from a seated to a standing position and has trouble walking. His diaphragm and chest wall muscles do not get the message to work.
- The survival rate is usually 3-5 years after diagnosis. Usually the younger the patient is at diagnosis the longer the disease will linger, patients diagnosed under 45 live longer than those diagnoses after 65 (MDA/ALS Magazine, 2014). Also the longer a diagnosis takes from the onset of the disease this is a predictor for better survival rates. Women also seem to have a shorter life span than men diagnosed with ALSMDA/ALS Magazine, 2014). Another area that can affect the prognosis is where the disease starts. If the disease starts in the arm or leg the prognosis and survival rate is longer, in the face or speech muscles the prognosis is not as good (MDA/ALS Magazine, 2014). Since there is no cure or treatment, this is probably what will lead to the patient’s demise (Rowland, 2001).
- The person with ALS has difficulty in speaking and swallowing. This may be the first symptoms. A difference in voice may be noted. The person may drool due to the inability to swallow his own saliva. This also causes a choking hazard due to the saliva going into the trachea. Normally, we swallow our saliva. This is a nonvoluntary action. The ALS patient looses this ability. He will not be able to use speech as a communication method. This can cause frustration in it’s own right. The ALS patient will have difficulty in pushing herself up from a seated to a standing position. Se will also have difficulty walking or climbing stairs. Images courtesy of bing.com
- One of the main benefits of regular exercise for individuals experiencing problems with their Central Nervous System is that it improves blood flow and coordination. With regular exercise it is likely that an individual may experience higher tolerance to pain and have improved balance and coordination. The CNS can be described as a connector to the mind and body. The nervous permits the brain to send signals to the rest of the body. There are countless older adults who are at risk for fall precautions which can cause an individual to break their bones. This may also lead to the individual losing their independence if they are no longer able to live alone and require twenty four hour care in a long term facility which consequently increases their cost of care. A well balanced nervous system is able to properly use proprioception which enables the body to easily adapt to the things around it. Overall regular exercise has numerous benefits such as toning the body, stimulating the mind and improving memory. Memory functioning is improved because exercise stimulates blood vessel regeneration and provides oxygen and nutrients to the brain. Once an individual is aware of the foods that support a healthy nervous system function he or she will have improved health outcomes. Food that have high concentration of B vitamins, magnesium and omega-3 fatty acids are vital in repairing a damaged nervous system. Consuming dark green leafy vegetables, eggs, beans, whole grains and red meat are good for rebuilding nervous system. Salmon, flaxseeds and walnuts are great sources of omega-3 fatty acids. Black beans, squash and cooked spinach are excellent sources of magnesium. Magnesium is significant in improving proper neurological function and helps regulate enzymatic activity in the body. Some individuals may find it beneficial by taking a bath with Epsom salt. Epsom salt is Magnesium Sulfate and this is absorbed through the skin, thus relaxing the nervous system. This option is not advisable for all individuals such as those expecting a baby or older adults. Individuals should seek consultation before trying this method. In some cases when individuals become older they are at risk for isolation. Staying active and socializing with other has several benefits including healthy brain stimulation. The physical and emotional stressors in ones life may be beneficial as a variety of chemicals are released stimulating the brain. As we know not all stress is bad for you. Having regular social interactions with others can increase the likelihood of an individual having a happier life in addition to living longer. Feeling loved and supported is comforting as we grow older. Friends and family members help older adults engage in meaningful and productive lives in their golden years. Many older adults may chose to retire however there are plenty of older adults who chose to remain working past their retirement age. Many of these people continue to work for social interaction and not necessarily for the extra source of income. "Cognitive behaviors embrace phenomena such as thinking, rules for emotional expression, perceiving, remembering, and problem solving. An individuals capacity for and creative use of language will be viewed as a component of this type of behavior" (Fabrega, 1977, p. 420). A sense of belonging may add years to an individual's life by strengthening social connections. In some cases individuals who have a positive relationship with others have a healthier immune system, lower blood pressure and lower heart rates. There are numerous health benefits for individuals to lose weight and become fit and healthy. Individuals of all ages are encourage to monitor their weight, caloric intake and become more active. "During exercise, the MR expresses an enhanced neuronal activity by metabolism in engaged brain regions added to the basal level of activity" (Dalsgaard, 2006, p.746). Researchers are studying the effects of weight-loss interventions such as dieting and the nervous system. In recent studies it has been discovered that individuals with higher sympathetic nerve resting activity are likely to lose weight. It is believed that nervous system activity may be linked to successful weight loss.
- Patients with ALS usually maintain their mental facilities throughout the disease process. This is one neurodegenerative disease that does not affect the mentalities. There are a number of mental therapies that patients with ALS can use to try and stay strong and active and to minimize the effects of ALS. Speech Therapy is an area that may help patients who begin to have issues speaking and communicating. The therapists can work with patients and family members to employee augmentive and alternative communication (AAC) to continue to communicate (MDA: Fighting Muscle Disease, 2014). As communication is vital and the AAC methods using boards speech systems, switches, and even recordings can be a valuable asset (MDA: Fighting Muscle Disease, 2014). Mental evaluations to determine baseline of functioning to work on strengthening neural paths and keeping the brain alert and functioning are another opportunity for ALS patients. Assistive devices like computers and other technology devices can assist ALS patients for communication and transportation but may also provide a way to keep coordination and responses sharp. Another area that can be difficult and frustrating for patients and families with ALS is the mental and emotional strain that comes with the disease. Counseling and therapy can be a great help for talking through and mentally unloading the grief and difficulties. The counselors can help patients deal with the emotions and the stress that can take a physical toll on patients (MDA: Fighting Muscle Disease, 2014). The ability to mental unburden themselves may help patients prepare and be better physically ready to face the challenges. Staying sharp and strong physically and mentally can help ALS patients. Images courtesy of bing.com
- For patients and families there are resources that can help in the research, care and support of living with ALS. The Packard Center at John’s Hopkins brings together some of the top scientists and researches to work on finding a cure for ALS (Packard Center , 2014). The focus and drive at the Packard Center is a cure for ALS and they are an international center for the study of ALS (Packard Center , 2014). The ALS Association has a number of references and support options for patients, families, can caregivers as well as health professionals on ALS (ALS Association, 2014). They provide links and resources to clinics, doctors, and the information on research trials and other treatment options fro ALS patients. The ALS Association also has advocacy programs and advertises events for fundraising and has a newsletter on the news and developments (ALS Association, 2014). The Muscular Dystrophy Association is another resource for patients and families that can give lists of services and assistance for patients. The MDA can also give you site specific information and assistance in your area that may be more detailed. The International Alliance of ALS/MND Association is a resources that may lead patients and families to other potential treatments and also gives people an idea of what is going on globally. While the links may be more about research they information on research and clinical trials may help patients (International Alliance of ALS/MND Associations, 2014).
- There are other resources that may help patients, caregivers and family members in dealing with ALS. The website for the ALS Therapy Development Institute has a large section for the ALS Community that provides links about upcoming fundraisers, events, forum discussions, support groups and caregiver assistance (ALS Therapy Development Institute, 2014). This website can help put patients in touch with research and trails, but also with networking with other families and ALS patients (ALS Therapy Development Institute, 2014). The Mayo clinic is a trusted source for care and they treat over 700 patients annually who suffer from ALS at their Florida, Minnesota and Arizona sites (Mayo Clinic, 2014). Clinical trials are constantly running to test new therapies, drugs, treatments, and to try and find a cure for ALS. Many of the resources and associations have links to current clinical trials ongoing and upcoming trials to see if patients meet the needs of the trial. Fundraisers are another resource for patients and families the ALS foundation can assist in getting a fundraiser started and a fundraiser can bring together people to network and help in ways that can provide support, changes to a home to accommodate a wheelchair or other assistance (ALS Association, 2014). Another resource is social media, there are many online support groups and groups that can provide assistance with transportation, care, equipment and other needs for patients with ALS and their support systems.
- Support groups are highly recommended for the family members of the patient with ALS. The patient may also benefit from support groups in the early stages of the disease. As the disease progresses, the patient will not want to or may not be able to attend support groups. Still, the family can benefit even after the patient passes. Just to compare stories and have a someone to talk to that has gone through a similar experience will help to lighten the load. The family will want to obtain whatever financial assistance they can find. They will want to consider Hospice and start thinking of other end of life situations they will encounter. They need to check in their community to see what is available for them.
- Amyotrophic Lateral Sclerosis is a motor neuron disease that affects the communication between the nerve cells and the muscles. The disease has a rapid progression with no cure. It is more common in males over 60 years old. It shows no racial or ethnic traits. It is more common in the US and England. The symptoms include slurred speech, change in voice, drooling and choking. The patient will also have difficulty rising from a seated position to stand and in walking. Eventually, the patient will be unable to breath due to non movement of the diaphragm and chest wall muscle. The prognosis is death.