ALS (Lou Gherig's Disease)

The first sign of ALS is often weakness in one leg, one hand, the face or the tongue. The weakness typically spreads slowly to both arms and both legs. This happens because as the motor neurons slowly die, they stop sending signals to the muscles. So the muscles don't have anything telling them to move. Over time, with no signals from the motor neurons telling the muscles to move, the muscles get weaker and smaller.

Over time, ALS also causes:

• Muscle twitching
• Trouble using your hands and fingers to do tasks
• Problems with speaking, swallowing, eating, walking, and breathing
• Problems with memory, thinking, and changes in personality, although these are uncommon

ALS doesn't cause numbness, tingling, or loss of feeling.

Just because you have muscle weakness, fatigue, stiffness, and twitching doesn't mean that you have ALS. Those symptoms can also be caused by other conditions. So talk to your primary care physician if you have symptoms.

To find out if you have ALS, your doctor will do a physical exam and will ask you about your symptoms and past health. You will also have tests that show how your muscles and nerves are functioning.

Tests to confirm ALS or look for other causes of your symptoms include:

• Electromyogram (EMG), which helps measure how well nerves and muscles work.
• Magnetic resonance imaging (MRI), which can show problems or injury in the brain.
• Nerve conduction studies (NCS) to test nerve function.

If your doctor thinks that you have ALS, he or she will refer you to a neurologist or the Parkview ALS Clinic to confirm the diagnosis and manage your symptoms. The Parkview ALS Clinic is a multi-disciplinary clinic that brings together a team of healthcare professionals specially trained to address the needs of individuals living with ALS, allowing them to receive care from each discipline during a single visit. Learn more about our ALS Clinic.

After being diagnosed with ALS, you are seen in the clinic on a regular basis throughout your ALS journey.

The care team will determine the best treatment options for you following a complete evaluation. Recommended treatment will depend on your medical history, a physical exam and the severity of your condition. Your personalized treatment plan may include lifestyle modification and/or medication management to help alleviate symptoms that change and evolve during the course of the disease.

Our multidisciplinary team is committed to helping people living with ALS maintain independence longer, enjoy an improved quality of life and extend their life.

This is accomplished through:

• symptom management
• assistive technology
• adaptive equipment
• education
• care services
• emotional support

Treatments may include:

Physical and occupational therapy
These therapies can help you stay strong and make the most of the abilities you still have.

Speech therapy
This can help you with coughing, swallowing, and talking after weakness in the face, throat, and chest begins.

Supportive devices and equipment
These can help you stay mobile, communicate, and do daily tasks like bathing, eating, and dressing. Some examples are canes, walkers, wheelchairs, ramps, handrails, raised toilet seats, and shower seats. You can also get braces to support your feet, ankles, or neck.

Medication
These may help slow the progression of ALS, relieve your symptoms, and keep you comfortable. There are medicines that can help with many of the symptoms you might have. These symptoms may include muscle problems (stiffness, cramps, twitching), drooling and extra saliva, depression and mood swings, and pain.

A feeding tube
This can help you get enough nutrition to stay strong as long as you can.

Breathing devices
They can help you breathe more easily as your chest muscles weaken.

As ALS symptoms get worse, you may have to choose which treatments you want for issues like breathing and eating problems. For example, would you consider using a machine to help you breathe if your breathing problems become severe? Do you want a feeding tube placed in your stomach if you are losing weight, unable to get enough calories by eating, or if you lose your ability to swallow?

As you make these choices, keep in mind that what's right for one person with ALS may not feel right for another. It's also okay to revisit your choices throughout the course of the disease. You may change your mind over time. Be sure to talk about your treatment options and share your concerns with your doctor.

You may find the following strategies helpful:

• Exercise and stretch your muscles as long as you can. Talk to a physical therapist about exercises you can do.
• Eat small, frequent meals. Choose soft foods that are easy to swallow. Try to sit up when you eat and eat slowly.
• Learn about devices that can help you avoid injury and stay independent:
• A neck (cervical) collar can support your head if the neck muscles get weak.
• Foot and ankle braces, a cane, a walker, or a wheelchair can help you move around.
• A ramp over stairs can allow you to get into and out of your house in a wheelchair.
• Handrails or a shower seat can keep you from falling in the shower. A higher toilet seat can help you go to the bathroom by yourself.
• If you have trouble talking, a voice amplifier or an erasable writing pad can help you communicate.
• Consider joining a support group. Sharing your experiences with other people who have the same problem may help you learn more and cope better.
• Be safe with medicines. Take your medicines exactly as prescribed. Call your doctor if you think you are having a problem with your medicine.
• If you have not already done so, prepare a list of advance directives. These are instructions to your doctor and family members about what kind of care you want if you become unable to speak or express yourself.

If you or a family member has ALS, learn as much as you can about the disease and how to manage symptoms. Your values, wants, and needs are important things to think about as you make choices about your care.

Call your doctor now or seek immediate medical care if:

• You have frequent coughing periods.
• You feel like you are choking or have problems swallowing.
• You have trouble breathing.
• You have a fever.