Manitobaine de la SLA
The ALS Society of Manitoba is committed to providing the best possible care and support for Manitobans living with ALS/MND, their families and caregivers. As well, we build public awareness of ALS/MND and its impact on society. We also support research into the cause of and the cure for ALS/MND.
In our efforts to research and assist, we offer numerous programs. These programs range from providing resources from our in-house research library and our equipment loaning program right through to providing residency and respite (at the Brummitt Feasby ALS House) for those dealing with ALS.
Information can be found below regarding the various programs and services that we offer. If you have questions about any of the programs listed below, please do not hesitate to Contact Us and we would be happy to help.
For further information on residency at the Brummitt Feasby ALS House, follow the link below.
A home with 24-hour care and support for persons living with ALS/MND. This house is the first and only one of its kind in North America. The house was a gift to the ALS Society of Manitoba by Lynn Brown and Faith Johnston, whose stepmother Dorothy Brummitt Feasby died of ALS/MND.
Brummitt Feasby ALS House offers the opportunity for shorter respite stays in addition to long term residency. The Brummitt Feasby ALS House is a home where people living with ALS/MND realize their full potential in an environment that respects their rights and dignity. There is 24-hour care, specialized treatment, administration of medications, meal preparation, housekeeping and laundry, recreation activities, arrangements for appointments and specialist services, ongoing assessment and intervention, and a care plan designed to meet the needs of each individual.
Part of the ALS Society of Manitoba’s mission is to support the whole family, including children. It is important that support is given to all age groups of families and therefore the Children’s Program is an integral part of our services.
ALS Society of Manitoba provides education and opportunities for discussion for children of ALS/MND clients. There are also internet groups that can be facilitated, including website interaction at ALS Canada’s ALS411 Programs for Kids. This gives support to a broad range of age groups.
Other services that are available to children and their families are print material for all age groups, access to professional assistance, and the annual ALS Youth Retreat at beautiful Dallas Valley Ranch Camp, Regina, Saskatchewan for young adults. The ALS Society of Manitoba also has a Bursary Program for those that require financial assistance with any of these programs. For more information on the Bursary Program, including how to apply please Contact Us.
The ALS Society of Manitoba currently has two Client Service Coordinators to assist individuals living with ALS/MND and their families. The Client Services Coordinators provide information and education about the nature and management of ALS/MND, as well as information regarding local and provincial health care services and social and community resources. The Client Services Coordinators may also provide an assessment of a client’s ongoing needs and advocate with appropriate services as required such as home care, physicians, the ALS/MND Clinic Team and other services, ensuring changing needs are addressed. The Client Services Coordinators can also provide bereavement support and assist families through the initial stages of the grieving process.
The ALS Society of Manitoba has emergency response information kits available for all persons living with ALS/MND. The kit includes a health information form and a health care directive form. Once completed, the kit should be placed on your refrigerator and provides information for emergency personnel to respond quickly to your situation. The kit is ideal for chronically ill persons, those who live alone or who have caregivers and others who have speech difficulties or communication barriers. To obtain a kit, please Contact Us.
Did you know that the ALS Society of Manitoba has over 2,450 pieces of equipment?
Our Equipment Lending Program is designed to help people cope with the daily challenges of decreased mobility and independence, by providing basic and essential assistive equipment, which includes mobility equipment, lift equipment, bathroom aids, etc.
Questions regarding equipment to assist with activities of daily living are common for people living with ALS/MND. Certain items can be very expensive and some require fitting. If you are unable to obtain equipment through any other agencies, such as Home Care, Manitoba Possible or private insurance, the ALS Society of Manitoba may be able to help. We have an equipment lending program available to our clients at no cost.
For more information, please Contact Us to get in touch with our Client Service Coordinators.
Give a BOOST is a free program that provides extra nutritional supplement drinks to clients living with ALS/MND who may need extra calories or protein in their diet. We try to help people with ALS/MND on an as-needed basis. The public or families can also donate to this program if they wish as this is a costly, but very needed, program. This program is in high demand.
In the early stages of ALS, clients may or may not have started to notice some changes in their breathing especially if they have a sedentary lifestyle. While ALS does not impair the lungs themselves, the muscles involved in breathing and coughing will become weaker over time and eventually result in respiratory failure. In some individuals, respiratory muscles may be affected late in the course of the disease (Limb Onset or Non-Bulbar ALS); in others, these muscles are affected early in the disease process (Bulbar ALS).
Lung Volume Recruitment (LVR) is an effective way to increase cough capacity, lung capacity and help maintain respiratory health. It is a critical therapy for individuals with respiratory muscle weakness and limited cough capacity who are at risk for acute respiratory failure.
The LVR Bags are provided by the ALS Society of Manitoba at no cost to clients. Clients will receive a prescription for an LVR bag which they will forward to the Society where they will receive an LVR bag. The Respiratory Therapist at the ALS/MND clinic will provide the initial teaching to clients and their families about the proper use, technique and cleaning of the LVR bag.
The ALS Society of Manitoba supports the ALS Canada National Research Programs and holds two annual Walks to End ALS within the province for ALS/MND – one in Winnipeg and one in Brandon, during the month of June (which is also ALS Awareness Month). Forty percent of proceeds support ongoing research into ALS/MND while 60% remains in Manitoba to help people with ALS/MND and their families through information, education, equipment and support.
The ALS Society of Manitoba maintains a lending library. The Society’s library consists of books, videos and brochures about ALS/MND, individual experiences with the disease, coping with disabilities and grief. There are also a number of booklets specially designed to help children and teens who have a family member living with ALS/MND; in addition to booklets on strategies for breathing, eating, drinking and swallowing as well as information on communication and mobility. To borrow materials, please Contact Us.
Did you know that the ALS Society of Manitoba hosts support groups for Manitobans living with ALS/MND?
The ALS Society of Manitoba has ongoing support groups throughout the year (except December) for persons living with ALS/MND, their family, friends and caregivers. Meetings may include a guest speaker or focus on specific topics, as well as informal discussion and refreshments. Virtual Support Groups and 1 on 1 are available.
For more information or to RSVP please Contact Us.
When getting enough nutrition and fluids to meet your daily needs becomes difficult, a Percutaneous Endoscopic Gastrostomy (PEG) tube may be recommended to you. A PEG tube is sometimes referred to as a stomach feeding tube.
Some people will initially use the tube to maintain adequate fluid intake while their meals remain the same. There are others who use tube feedings to supplement their daily intake either at the end of a meal or to replace one or two meals completely. Then there are those who switch from eating by mouth to total tube feeding. In addition to fluid and formula, some people will also use their PEG tube to take medications.
In Manitoba, the formula that you would consume through the PEG Tube is provided by the Manitoba Home Nutrition Program at no charge. The ALS Society of Manitoba would provide the tube feeding bags, different size syringes and any connectors if needed, plus other supplies at no charge to clients.
The VFAF program is a program designed to match trained caregiver support volunteers to a person living with ALS/MND and their family members. These volunteers would provide practical assistance and advocate for the caregiving family, saving them time, energy and allowing them to focus on their relationships and major issues of care. As well, these volunteers might also help to mobilize other community resources, but would not provide direct patient care. It is anticipated that the volunteer would develop relationships with various members of the caregiving family and would provide support even after the death of the person living with ALS/MND.
***This program is being updated at this time***