Your Team

the team photo

As a patient at the MUHC, a team of dedicated health care professionals will care for you. Each member of the team has a different background and specialty. Your team may include doctors, nurses, a physiotherapist, an occupational therapist, a speech language pathologist, a social worker, a respiratory therapist, a dietitian, a neuropsychologist and a spiritual care counselor. Other specialists may be contacted if needed.Before and after each visit to the clinic, your team will discuss your case and agree on any changes that need to be made to your treatment. Your team is available by phone outside of the clinic hours.

 

Administrative Agent

The administrative agent will assist you with scheduling your clinic appointments and tests. She will also help you to make appointments with other consultants that the doctor may want you to see. She will help by coordinating the many different forms and paperwork that may be required. You may, for example, need forms to get certain medication. You may need letters for your employer, your insurance provider or for other health care professionals involved in your care. In between clinic visits, the administrative agent is a resource person available to you and can be reached at (514)-398-5262.

Clinical Nurse Specialist (CNS)

The clinical nurse specialist (CNS) is there to provide care and information to you and your family. She will give you information about treatments, medications and how to manage your symptoms. She will meet with you and your family to talk about concerns or problems. The CNS will  work with other team members to give you information about community resources. This will help to make sure that you continue to receive proper care once you return home. Between your visits to the clinic, you may call her by telephone to answer any questions that you have. The CNS will help you and your family throughout your illness.

Social Worker

The social worker will help you and your family cope with your illness. The social worker will see you in the clinic. It is also possible for the social worker to visit you in the hospital if you are admitted. You may have many concerns becauseof changes in your life such as money troubles, losing your  independence, or problems with friends and family. You may also be very worried about the future. She can talk with you and your family to help you make informed decisions. She can give you information about organizations and government agencies, and she will be able to help you with government forms.. The social worker will also help you get ready to leave the hospital. She will continue to help you and your family throughout your illness.

Respiratory Therapist (RT)

During your visit to the clinic you will meet the respiratory therapist. She will do a test that will measure your ability to take a big breath and exhale quickly. She will also ask questions concerning your breathing. At each visit you will be asked to do a breathing test and with this information the  doctor will suggest a different way of improving your breathing. She will help you with:

• coughing techniques

• deep breathing exercises

• any questions regarding your breathing problems

• some teaching about the disadvantages of smoking

• sometimes the use of equipment to help support breathing is also talked about

• her goal is to provide the appropriate care for each and every patient

 Occupational Therapist (OT)

The occupational therapist (OT) will help you to be better able to complete and enjoy your daily activities. The OT will ask you questions about what you do everyday at work, at home and in your leisure. The OT will help you to continue these activities for as long as possible. The OT might help you to:

• Learn about how to save your energy.

• Use assistive devices, splints, and compensatory techniques.

• Get access to special government programs for parking, driving, handicapped transport, or home modification, and wheelchairs.

• Get access to rehabilitation programs.

The OT will contact other therapists that may be involved in your care. The OT is also responsible for helping people who have problems swallowing. The therapist will give you information on techniques to help you eat safely and make suggestions about foods to eat. During your illness, the OT will change the interventions provided to help you have a better quality of life with ALS.

Dietitian

The dietitian plays an important role in your care. You will need to make changes in your eating habits because of ALS. This can make it difficult to maintain good nutrition. The dietitian will check to see if you are eating and drinking enough of the right kinds of foods. She will give you and your family advice to make sure that your nutritional needs are being met. This advice might include:

• Good food and drink choices

• Foods with the right texture (e.g.: solids and liquids)

• Proper food preparation

• Changes in the size of meals

• Changes in the number of meals each day

• Nutritional supplements (eg: Ensure Plus)

• Foods that are easy to eat and swallow

• Ways to save your energy

• Other feeding methods if needed

 Speech-Language Pathologist

The speech-language pathologist will look at how you are speaking throughout the course of the disease. Testing will check the strength, movement and coordination of the muscles that help you to speak. The speech-language pathologist will give you strategies to help you communicate as well as you can. She may also recommend the use of communication  aids such typing devices, computers or voice amplifiers. If necessary, she may refer you to other community resources for more specialized communication aids.

 

Neurologist

The neurologist is a doctor who is trained to care for people with diseases of the nervous system. The neurologists in the ALS Program are specialists in treating this disease. They are able to tell the difference between this disease and the many other diseases of the nervous system with similar symptoms. The neurologist will also give you medications, tests and special equipment to help you will your illness.  

Spiritual Care Counselor

The spiritual care counselor will provide emotional and spiritual support to you and your family. For many people, illness can change the way that they see themselves and the world. You may have questions about your beliefs and values. You may be asking important questions about what is happening to you and what your illness will mean to your friends and family. Talking to the spiritual care counselor can help you find inner strength to live with ALS.

Physiotherapist (PT)

The role of the physiotherapist is to assist you in maintaining your mobility as much as possible. If you notice any difficulties walking, the physiotherapist may recommend mobility aids – like a cane, a walker, or braces – to improve you safety and independence. She may also assess if you would benefit from an exercise program. If appropriate, the goals would be to:

• Maintain or improve flexibility

• Prevent discomfort which can be caused by fatigue or postural problems

• Optimize respiratory status .

Along with other team members, the physiotherapist may refer you for community services if needed.