Kelly Butler ALS Center

You will check in to your appointment on the second floor of the Strada Patient Care Center at the front desk for the Department of Neurology. When it is time for your appointment, the nurse will call you into the clinic from the waiting room. Then, you will meet each of the professionals listed above, one at a time, to evaluate and discuss your current needs and care plan.

What to expect at your appointment

Your appointment will last approximately four hours. The nurse will get your vital signs and walk you through the ALS-FRS form. The neurologist will check your neurological function and monitor your disease progression. The physical therapist and occupational therapist will look at your balance, strength, and range of motion, and they will review your activities of daily living. The speech-language pathologist will assess your communication and swallowing. The respiratory therapist will evaluate your breathing and pulmonary function. The social worker will help to connect you with community resources, discuss financial matters, and provide psychosocial support. The dietitian will evaluate your weight and nutritional needs.

Preparing for your appointment

This is a long appointment, and it can be easy to forget questions you wanted to ask and concerns you wanted to address. It can be helpful to write these down ahead of time, as you think of them, so you can refer to them during the appointment.

Other items to bring:

• A notebook (to write down information during the appointment) 
• Medication list (include dosages)
• A water bottle and/or snack
   

Self care

We know that this time will be stressful and quickly can become overwhelming. There is no right or wrong way to be feeling right now. You may feel angry, sad, scared, confused, or have no idea how you feel at all.

Coping with an ALS diagnosis is different for every individual. There is no right or wrong way to feel when you hear the news of your diagnosis.

Receiving the diagnosis of ALS may trigger a wide range of emotions, including fear, anger, loss, sadness and depression. It is essential to maintain a balance between a sense of hope and realistic expectations.

Empower yourself to learn everything you can about ALS and how it will affect you. It is important to meet with your ALS specialist and multidisciplinary team to discuss any anxiety or concerns you may have regarding information you may have found.

Coping with ALS day-to-day

Take time to adjust. The diagnosis can be shocking. Take time to absorb all of the information and allow yourself time to work through your emotional reactions. Denial, anger, sadness and grief are all common and normal reactions.

Be hopeful. Attitude is everything. ALS is not your entire identity, only a part of your life. Think beyond physical changes. Foster deeper connections with your family and friends.

Seek early treatment. Ignoring problems can make a situation more difficult.

Take charge of your care. You are the most important part of the care team. Healthcare professionals and family can help make decisions, but you are in charge.

Engage family and friends. Keep lines of communication open and express your feelings freely. Encourage family and friends to express their feelings as well.

Find support groups. Both you and your family or caregiver may benefit from a support group. Your care team can help you find a group if you are interested.

Plan ahead. Work with your care team to formulate plans for end-of-life care, including the care options you prefer and those you do not.