Patient Information

When you come to our ALS Multidisciplinary Care Center, you will have the opportunity to meet with our team during a two-hour session. To contribute to the success of this session, you may receive telephone calls prior to your visit to determine your most important concerns, so that we may address these concerns when we meet.

At your initial visit to the Eleanor and Lou Gehrig MDA/ALS Multidisciplinary Care Center, a neurologist with expertise in ALS will conduct a thorough evaluation and previous tests will be reviewed. If indicated, additional diagnostic testing may be recommended.

On the day of the evaluation with the neurologist, you may also be seen by one of the ALS nurse practitioners. The nurse practitioner will assist you with any additional information you may need, such as recommended tests, prescriptions and, if indicated, referrals for physical rehabilitation. In this way your symptoms may be addressed even in the absence of a definite diagnosis.

You will be asked to return to the ALS Multidisciplinary Care Center after all of your testing is complete to meet again with the neurologist for a diagnostic discussion. If the diagnosis is confirmed, you will also meet with the multidisciplinary team members who will provide evaluation and specific recommendations for how to approach the changes you are experiencing.

It is very important that the individual diagnosed with ALS maintain regular contact with an ALS center. Effective symptom management will help maintain and enhance quality of life. This includes regular assessment of physical functioning in order to provide education and guidance concerning the maintenance of strength, balance, and safety. Additionally, nutritional intake should be assessed regularly and adjustments made according to changes in physical status. Respiratory function should also be monitored on a regular basis.

Symptoms such as muscle cramps and stiffness and excess saliva can often be alleviated with medications. Adaptive and augmentative equipment can help to maintain effective communication, mobility, and safety.

It is also extremely important that the individual diagnosed with ALS become educated in order to pro-actively plan their medical care. Long-term prognosis and quality of life is enhanced when individuals participate actively in their medical management. Furthermore, the diagnosis of a chronic long-term illness can be a motivating factor in setting one's affairs in order.

Attending ALS support groups on a regular basis is an effective way to remain abreast of new medical developments.

Additionally, clinical therapeutic research trials should be investigated. The numbers of clinical research trials have risen in the past few years. More therapeutic opportunities are available now than ever before for those diagnosed with ALS.