1. How did I get ALS?
We do not know what causes ALS. For 95% of people with ALS, the cause has not yet been discovered. There are several theories that researchers are looking at to answer this question. About 5 % of people with ALS have other family members who have had ALS and in this case the condition is called familial ALS (fALS). fALS is caused by a mutation in a gene. [See question #2]
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2. Can I pass ALS down to my children?
Only people with fALS have the potential to pass the condition down to their children. fALS is caused by genetic mutations and can be passed from parent to child. Researchers have found that about 25% of families with fALS have a mutation on chromosome 21 in the superoxide disumtase-1 gene. The mutation has not yet been discovered for the remaining 75% of families. If there is only one person in the family with ALS, the disease is sporadic and children and other family members are not at increased risk for developing ALS.
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3. Can my family catch it from me?
No. ALS is not contagious.
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4. How can I be sure that the diagnosis is correct?
There is no single diagnostic test for ALS but there are several tests that support the diagnosis. It is important that when ALS is suspected or diagnosed, that the individual undergo a second opinion with an expert in ALS. Sometimes, especially early in the course of the condition, ALS can be suspected but not proven. In this case, the individual with be advised to return to the specialist after a period of time to look for progression.
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5. How can I avoid unproven and potentially dangerous advice and treatments?
Unfortunately, when ever an individual is diagnosed with a serious condition, they become a target for quacks and thieves who take advantage and exploit the desperation that people with an incurable disease face. One can protect themselves from quacks and thieves by discussing possible alternative treatments with your physician. There are some red flags to look for: the "proof" that the treatment works is provided by testimonials from other individuals, insurance will not pay for it, one is required to send a check to an offshore bank account, and being promised a cure are warning signs that you are dealing with a thief.
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6. Do nutrasweet, mercury fillings, or other things in the environment cause ALS?
Mercury fillings or NutraSweet do not cause ALS. We do not know what causes it and it one day we may find that multiple genetic factors along with multiple things in the environment cause ALS. It does appear that there are some things in the environment that may increase someone's risk of getting ALS. For example, it seems that serving in the US military increases the risk. Other possible environmental exposures are currently under investigation at Emory and other ALS research centers.
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7. How much should I exercise?
The effect of exercise on ALS patients is not well documented and the available literature is inconclusive. People with ALS are be encouraged to continue their regular exercise program however, high resistance and high repetition activity for any weak muscle group is discouraged as it can result in increased fasciculations and fatigue. It is important to vary workouts to involve numerous muscle groups. For PALS that do not routinely exercise it is best do stretching exercises and to stay as active as they can in the daily routine. A reasonable aerobic exercise program is appropriate to optimize muscle strength and endurance. If risk of fall can be minimized, gentle, low-impact aerobic exercise such as walking, swimming, and stationary bicycling can strengthen unaffected muscles, improve cardiovascular health, and improve fatigue and depression.
Spastic muscle groups need to be stretched daily if not several times a day to optimize mobility. Trunk rotation is one exercise that is advised for overall relaxation. In all cases, use common sense as your guide as undue fatigue should be your limiting factor. As a general rule, if you have done too much, the day after can be difficult to get out of bed.
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8. What should I be eating?
Continue to eat healthy meals and avoid fad diets. You should strive to maintain your weight. Please discuss any "special" diets with your physician.
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9. Can I travel?
Yes! Travel is possible during much of the course of ALS. Some types of vacations are easier then others. Sometimes preplanning is needed but ALS patients travel all over the world.
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10. Should I stop working and go on disability?
This is a very personal decision. Some people find that the hours spent working takes them away from other things that they prefer to be doing. Others feel that their work is a very satisfying part of their lives. The Americans with Disabilities Act can provide some protection to people who want to continue to work. At the ALS Center at Emory, we will support your decision in any way that we can.
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11. Sometimes I start laughing (or crying) and can’t stop. Is this part of ALS?
Yes. ALS patients can experience episodes of uncontrollable crying or laughter that does not go along with how they are feeling. People might cry but not feel sad. It is often seen in people a lot of upper motor neuron signs and people with bulbar disease. Although this symptom is not related to depression, it can often be treated successfully with antidepressant medications.
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12. Does ALS cause pain?
ALS is a disease of motor nerves and pain is generated by sensory nerves so technically, ALS does not cause pain. However, sometimes the effects that ALS has on the body do cause pain. For example, if a limb is weak the joint fails to get used as it was designed and joint pain can develop. If arthritis is present, loss of mobility can make arthritis pain worse. Although ALS does not cause pain, ALS patients sometimes do experience pain and pain can be treated with a variety of medications and therapy.
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13. Will I need to go on oxygen?
While ALS patients may experience weakness of their breathing muscles their lung tissue is not affected. Oxygen is only used when lung disease impairs gas exchange. People with emphysema or other lung diseases may need oxygen whether or not they have ALS. Otherwise, oxygen is rarely needed and can actually be harmful at times.
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14. Does ALS ever cause personality changes or memory loss?
For many years we believed that ALS did not affect the mind. However, since about 2000, we have been slowly acquiring new information that shows that some ALS patients do develop problems with memory, language, and decision making. We do not yet know what the actual rate of ALS related dementia is and there is research going on around the world to answer this question.
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15. How do ALS patients die? Do they suffocate and choke?
Some ALS patients choose to have a tracheostomy and go on a ventilator. This choice will prolong someone’s life indefinitely and death eventually comes from infection, heart attack/failure, blood clots, or a similar problem. Most patients choose not to have invasive ventilation and in that case, often receive care from a hospice organization. Hospice focuses on keeping people comfortable so that they can enjoy their lives. There are a variety of medications and treatments that can prevent and treat discomfort including that related to shortness of breath. Most ALS patients die peacefully in their sleep.
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16. It has been almost 70 years since Lou Gehrig died. Why don’t we know the cause and cure yet?
As we have learned more about ALS we have found it to be a very complicated condition. There are many, many research teams all around the world focused exclusively on ALS. There are even more research teams studying neurodegeneration and why nerves die. We need all the help we can get to support our research and allow us to move forward. We are grateful when someone will allow an autopsy and donation of tissue after death. Also, financial support is always put to excellent use. How You Can Help
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17. How do I get an appointment at The ALS Center at Emory?
Call our center office at 404-778-3754. If your insurance requires a referral to see a neurologist, obtain it. We will need to see all medical records concerning your diagnosis and privacy laws require the patient to contact the physician's offices. Records can be faxed to 404-778-3495. The main number for scheduling an appointment with a neurologist at Emory is 404-778-3444 however if you call the ALS center, you will receive specialized attention. Waiting times vary based on season and demand but we make every effort to provide an appointment to new patients as soon as possible.
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18. What should I expect at my first visit to The ALS Center at Emory?
The first time we see a patient our focus is on confirming the diagnosis. Often times tests performed by other physicians are adequate and need not be repeated. Sometimes however, if we have any uncertainty, we will suggest that additional tests be done so that we can be as sure as we can that we have not missed another condition with possible treatments.
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19. What should I expect at multidisciplinary clinic?
The PALS and family are seen in the examination room. The various health care providers will treat the patient in the room. Every patient sees the doctor, nurse and respiratory therapist at every visit. Other providers are available when the PALS is in need of their services. There are some services provided by our therapists that take a long time, such as some speech and swallowing evaluations and the evaluation for an electric wheelchair. Sometimes these visits need to be scheduled outside of the clinic appointment but sometimes, especially for people traveling from out of state, we are able to complete the evaluation before, during, or immediately after the clinic visit.
Opportunities to meet other patients and families occur in the waiting room. Some people find this to be a very positive part of their lives but it is optional and those who prefer not to interact are respected.
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20. What are the directions to the ALS clinic?
The clinic is held on the Emory University campus at The Emory Clinic located at 1365 Clifton Rd. Atlanta, GA 30322. Click here for directions.
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21. What should I expect to pay?
The Emory Clinic accepts Medicare, Medicaid, and many insurance plans. Your usual deductibles and co-payments will apply. Support from The Muscular Dystrophy Association allows us to see patients without any insurance or for whom Emory is out of network.
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22. Do I need a referral?
If your insurance requires a referral in order for them to pay for your care, then yes, you must have a referral before we can officially schedule your appointment. The ALS Center does see patients who are referring themselves but your outside records are required and so it is best to go through your current treating physician.
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23. Will I go back to my doctor?
This is your choice. Some people prefer to return to the care of their community neurologist, others wish to transfer their care to The ALS Center. Sill others want to come to ALS clinic and continue to see their community doctor. Everyone must have a Primary Care Doctor to manage health issues that are unrelated to their ALS diagnosis. The neurologists at The ALS Center are not qualified to function as primary care physicians.
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