Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease, is a progressive and fatal neurodegenerative disease that affects nerve cells in both the spinal cord and brain. There is no definitive cause for the disease nor is there a cure. The disease can affect anyone, with approximately 5,600 people diagnosed each year.http://www.alsa.org/als/what.cfm?CFID=4528622&CFTOKEN=1026d4b11c0629e3-9DBCB087-188B-2E62-803AD12E69C315D5 It is a devastating disease and caring for someone with ALS can be both emotionally and physically difficult at times. If you are a caregiver for someone with the disease, there are numerous steps you could or should take to ensure optimal quality of care for them while still considering your needs as well.

If you are caring for someone with ALS, it is wise to research and educate yourself about the disease. Knowing more about how the disease affects people will help you cope and manage the care that is needed for the person you are helping.

Amyotrophic Lateral Sclerosis affects everyone differently. The majority of symptoms includes:

1. Muscle weakness in one or more of the muscles in the arms, hands, legs and any muscles that affect speech, swallowing or breathing.http://www.alsa.org/als/symptoms.cfm?CFID=4528622&CFTOKEN=1026d4b11c0629e3-9DBCB087-188B-2E62-803AD12E69C315D5
2. Twitching and cramping of muscles, especially in the hands and feet.http://www.alsa.org/als/symptoms.cfm?CFID=4528622&CFTOKEN=1026d4b11c0629e3-9DBCB087-188B-2E62-803AD12E69C315D5
3. Impairment of the use of arms or legs.http://www.alsa.org/als/symptoms.cfm?CFID=4528622&CFTOKEN=1026d4b11c0629e3-9DBCB087-188B-2E62-803AD12E69C315D5
4. Slurring of speech and difficulty in projecting the voice.http://www.alsa.org/als/symptoms.cfm?CFID=4528622&CFTOKEN=1026d4b11c0629e3-9DBCB087-188B-2E62-803AD12E69C315D5
5. During advanced stages of the disease: shortness of breath, difficulty in chewing, breathing and swallowing.http://www.alsa.org/als/symptoms.cfm?CFID=4528622&CFTOKEN=1026d4b11c0629e3-9DBCB087-188B-2E62-803AD12E69C315D5

The onset of these symptoms is different for everyone. Some may experience weakness in ther arms first or they may experience slurring of the speech. The progression rate and survival rate can also differ person to person. According to the ALS Association, "Although the mean survival time with ALS is three to five years, many people live five, ten or more years. In a small number of people, ALS is known to remit or halt its progression."http://www.alsa.org/als/symptoms.cfm?CFID=4528622&CFTOKEN=1026d4b11c0629e3-9DBCB087-188B-2E62-803AD12E69C315D5

It is important to note that the disease does not affect one's intelligence, thinking or memory.

While educating yourself about the disease, it may be necessary to research what options are in terms of healthcare, possible clinical trials, physical therapy or any outside help which will help the ALS patient adapt well with the disease in their natural surroundings.

If you are caring for someone with ALS, your role as a caregiver will require a lot of effort and time. If the person lives with you, modifications, such as wheelchair lifts, will need to be made to your home in order to accomodate their needs. You must also learn to balance your needs as well in order to be an effective caregiver.

If the person you are caring for is a spouse, child, relative or friend, continue having the same relationship. Do not begin to treat them like a patient.

Upon being diagnosed with ALS, a person will feel an abundance of emotions. They may feel defeated, be in denial or accept the outcome. Whatever the case, it is important to be supportive and, at least, try and put yourself in their shoes.

Let the person talk about their emotions and how they feel, but only if they want to. If they do not want to talk about the disease, then do not push the issue. Also, if the person wants to seek more opinions from doctors, alternative care or other medical care, be supportive. However, do not be afraid to be honest in regards to any issues.

Being patient with the person is also very important. As the disease progresses, it will become difficult for the person with ALS to do what they are accustomed to. If you find yourself losing your patience, see if someone else will help you or give you a break.

During the course of the disease, many people stricken with ALS will begin having difficulty in swallowing and/or chewing. It may be necessary that the person's meals are supplemented with high calorie shakes or that the meals contain only soft foods in smaller portions. If the person you are caring for can still utilize their arms or hands, you can provide flatware that has longer handles and cups that are lightweight. When the disease becomes more advanced, the person may need a feeding tube. It will also be necessary for you to learn how to properly feed through a feeding tube.

As the disease progresses, it may also become difficult for the person to maintain hygiene on their own. Along with bathing, those with ALS will also need help with oral hygiene, clipping their nails and cleaning up after having a bowel movement or urinating.

If you cannot care for the person with ALS entirely on your own, you need to find someone to help you. In most cases, ALS patients require both non-medical and medical care agencies to assist in providing care, such as home health, physical and occupational therapists. Find friends and family members who are also able to help out as well.

One of the most important aspects of being a caregiver is learning to take care of yourself. Do not feel guilty or selfish for taking a break and giving yourself the opportunity to do what is important to you. Do not burn yourself out or become too emotionally and physically exhausted to the point where it interferes with the care you provide.