ALS Clinic (2008)

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Con­tents

I. Intro­duc­tion
II. Your Team
III. ALS Clinic
IV. Addi­tional resources & infor­ma­tion


I. Intro­duc­tion

Image The McGill Uni­ver­sity Health Cen­tre (MUHC) ALS Clinic is found at the Mon­treal Neu­ro­log­i­cal Hos­pi­tal (MNH).
Clin­ics are held on Mon­days only.

The pur­pose of the ALS Clinic is to pro­vide you with spe­cial­ized care that is designed to meet your needs. In order to do this a team will care for you. This team includes you, your close friends and fam­ily, and many health care pro­fes­sion­als from the hos­pi­tal. Other spe­cial­ists will be con­tacted if needed. Your team will work to:

  • Iden­tify your needs and make a care plan for you.
  • Involve your fam­ily in this plan if it is appro­pri­ate for you.
  • Man­age your symptoms.
  • Give you oppor­tu­ni­ties to join clin­i­cal trials.
  • Involve other health care pro­fes­sion­als from the community.
  • Give you care at all stages of your illness.

Amy­otrophic Lat­eral Scle­ro­sis (ALS) is also known as Lou Gehrig’s Dis­ease or Motor Neu­ron Dis­ease. It is a pro­gres­sive neu­ro­log­i­cal dis­or­der. That is, it gets more seri­ous over time. ALS destroys motor neu­rons. These are cells that send mes­sages from the brain to vol­un­tary mus­cles. Walk­ing, talk­ing, breath­ing, swal­low­ing, chew­ing and mov­ing your arms all use vol­un­tary mus­cles. In most cases, your senses, your abil­ity to think, eye mus­cles and the heart, bowel and blad­der are not affected. Sex­ual func­tion is not affected. ALS is not contagious.

About 3000 Cana­di­ans cur­rently live with ALS. Most peo­ple with ALS are between the ages of 4060, but ALS can occur in younger and older peo­ple as well. The most com­mon form of ALS occurs for no obvi­ous rea­son. About 510% of peo­ple may have an inher­ited form of ALS. There is no known cure for ALS but researchers are work­ing to learn more about this dis­ease. Researchers believe that ALS is caused by many events occur­ring in the body. With more research, bet­ter treat­ment for ALS will one day be avail­able.
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II. Your Team

ImageAs 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)-3985262.

Clin­i­cal Nurse Spe­cial­ist (CNS)
Image 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 because of 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)
Image 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
Image 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)
Image 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.
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III. ALS Clinic

Loca­tion of the Clinic
The McGill Uni­ver­sity Health Cen­tre (MUHC) ALS Clinic is located at the Mon­treal Neu­ro­log­i­cal Hos­pi­tal (MNH). Clin­ics are held on Mon­days only. You may call the clinic from 8am to 4pm, Mon­day to Friday.

Loca­tion: ALS Pro­gram
Mon­treal Neu­ro­log­i­cal Hos­pi­tal
2nd floor, Room 201
3801 Uni­ver­sity Street
Mon­treal, Que­bec H3A 2B4
Tel: (514) 3985262

The Clinic Visit – What to Bring Image

  • Fam­ily mem­bers are encour­aged to come with you to the clinic.
  • Please bring all the med­ica­tions you are tak­ing to the clinic.
  • It is a good idea to come pre­pared with a list of ques­tions for your neu­rol­o­gist. This will help you to remem­ber your ques­tions at the time of the clinic visit.

Ques­tions to ask your doc­tor include:

  • What are the treat­ments available?
  • What are the ben­e­fits and/​or the pos­si­ble side effects?
  • How will the treat­ments affect my nor­mal activities?
  • Would a clin­i­cal trial (research study) be appro­pri­ate for me? Can you help me find one?

The Clinic Visit

  • Your visit at the ALS Clinic may take up to half a day.
  • On your first visit, the doc­tor will do a full assess­ment and med­ical history.
  • Dur­ing your visit, other tests (like an Elec­tromyo­g­ra­phy – EMG or Mag­netic Res­o­nance Image – MRI) may be sched­uled. These tests are done to give the doc­tor more infor­ma­tion about your condition.
  • It is pos­si­ble that you will meet other team mem­bers dur­ing your visit, includ­ing the phys­io­ther­a­pist or occu­pa­tional ther­a­pist, the clin­i­cal nurse spe­cial­ist, the res­pi­ra­tory ther­a­pist, the fel­low and/​or other team members.

How Can I get to the ALS Clinic?
By Car: Image By Decarie autoroute and from the South shore fol­low the signs “Mon­tréal – Cen­tre Ville – Autoroute Ville Marie” and exit at Uni­ver­sity Street. Con­tinue North on Uni­ver­sity Street. Park­ing for a fee is avail­able on site. Entrances are located on Uni­ver­sity Street.

Park­ing: Park­ing near the hos­pi­tal is lim­ited.
Lim­ited metered park­ing is avail­able on Uni­ver­sity Street.

By Metro: Image The near­est metro sta­tion is McGill on the green line, which is located at the cor­ner of Uni­ver­sity Street and de Maison­neuve Boule­vard. The McGill metro will allow you to get out on Uni­ver­sity Street. If you decide to take the metro, there is a 1015 minute walk up a hill to get to the hos­pi­tal. If you have dif­fi­culty walk­ing, you may want to take a taxi up the hill. You could also get off at the Atwa­ter or Sher­brooke metro sta­tions and take bus #144.

By Bus: Image

  • From the east, get off at the Sher­brooke metro and take the #144 which will take you to the cor­ner of Pine Avenue and Uni­ver­sity Street with­out hav­ing to cross a busy inter­sec­tion. From the west, take the #144 at the Atwa­ter metro.
  • #107 at Pine Avenue and Doc­tor Pen­field Street. For the most direct route, con­tact the STM (Société des Trans­ports de Montréal)
  • Tel: (514) 2886287 (A-​U-​T-​O-​B-​U-​S)
  • Web site: www​.stm​.info

Hand­i­capped Access
Image Hand­i­capped entrances are north of the main entrance on Uni­ver­sity Street, or through the ambu­lance entrance at the rear of the hospital.

Wash­rooms that are acces­si­ble with a wheel­chair are located on the 1st floor in room 186 and at the clinic on the 2nd floor, where there is a raised toi­let.
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IV. Addi­tional resources & information

Infor­ma­tion about InfoNEURO
The Neuro-​Patient Resource Cen­tre of the Mon­treal Neu­ro­log­i­cal Insti­tute and Hos­pi­tal will help you by pro­vid­ing the fol­low­ing services:

  • Books, pam­phlets and arti­cles about your condition
  • Research on your ques­tions by a med­ical librarian
  • Com­mu­nity resources
  • Com­put­ers with inter­net access for your needs

Image All our ser­vices are free and con­fi­den­tial
We invite patients and their fam­i­lies to come and visit us!

Loca­tion: ALS Pro­gram
Mon­treal Neu­ro­log­i­cal Hos­pi­tal (room 354)
3801 Uni­ver­sity Street, Mon­treal, H3A 2B4
Tel: (514) 3985358
Email: infoneuro@​muhc.​mcgill.​ca
Web Site: http://​www​.infoneuro​.mcgill​.ca

Resources in the Com­mu­nity
ALS Soci­ety of Que­bec: http://​www​.sla​-que​bec​.ca
ALS Soci­ety of Canada: http://​www​.als​.ca
ALS Asso­ci­a­tion (USA): http://​alsa​.org

Dis­claimer Infor­ma­tion
Impor­tant. Mate­ri­als pro­vided by the Resource Cen­tre are for edu­ca­tional pur­poses only, they are not intended to replace the advice or instruc­tion of a pro­fes­sional health­care prac­ti­tioner, or to sub­sti­tute for med­ical care.
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Devel­oped by Maria Hamaki­o­tis, and Yas­min Khalili, Clinic
Nurse Spe­cial­ists of the MUHC Brain tumor Clinic team and Eileen Peter­son and Michelle Brown Librar­i­ans of the Neuro-​Patient Resource Cen­ter. Reviewed and revised by Dr. Richard Leblanc, Neu­ro­sur­geon, Head, MUHC Brain Tumour Clinic team..

Pro­duced by the Neuro-​Patient Resource Cen­ter 2008

Dis­claimer Information

IMPOR­TANT: Mate­ri­als pro­vided by the Resource Cen­ter are for edu­ca­tional pur­poses only, they are not intended to replace the advice or instruc­tion of a pro­fes­sional health-​care prac­ti­tioner, or to sub­sti­tute for med­ical care.


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