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Activity-based Neural Recovery Programs

Activity-based Neural Recovery Programs

Medical research has shown the benefits of continued exercise after SCI, including improved overall health and wellbeing as well as improved abilities in daily activities. Continued exercise can also reduce or limit debilitating complications that individuals with SCI are at significant risk of including pain, spasticity, weight gain, and cardiovascular issues. 

What are activity-based neural recovery programs?

In the last 10-15 years activity-based therapies or “activity based neural recovery programs” have become more common and some individuals with SCI seek out these programs following discharge from inpatient rehabilitation. Many clinics suggest their programs promote neural recovery by using tools and interventions to improve muscle activation. These programs often rely on the theory that repeated, vigorous, assisted exercise and locomotor training can help re-establish patterns of nerve activity within the brain and spinal cord that in turn may improve mobility and function below the level of injury. Many of these clinics give priority to standing and ambulation, whether clients have complete or incomplete injuries. Very few research studies have been done to test activity-based therapy programs, what amount, frequency and length of therapy is required and what specific types of therapies give the best results.

Any improvement following an exercise program can be important to a person’s life and wellbeing. Exercises such as assisted standing, walking, or moving muscles and joints may not help to regain lost function, but can benefit health and wellbeing by maintaining range of motion, managing spasticity, preserving bone health or limiting pain. Exercise can support the natural underlying recovery of the nervous system after an injury, however this in itself does not suggest neurological recovery, but may be a result of improved fitness, strength, endurance or the supportive environment they are in.

Research on activity-based therapy is limited, but the available scientific evidence shows some modest functional improvements for people with motor incomplete SCI (AIS C and D) but it is unclear how relevant it is based on level of injury and time since injury. The effectiveness of activity-based therapies on individuals with motor complete SCI (AIS A and B) has not been found yet. Individuals with SCI and their families should continue to stay in touch with their SCI clinicians (physiatrist and physiotherapist) and monitor research in this area in order to understand whether activity-based therapies are useful in their own unique case.

The Rick Hansen Institute recommends that people with SCI and their families carefully consider the cost, risks and benefits that may be involved before undertaking such therapies.

Rick Hansen Institute's position on activity-based neural recovery programs

Despite the benefits that activity-based exercise therapies may offer, independent research must be conducted to ensure such therapies offered outside the standard of care are effective and safe for people with SCI. Currently a large clinical trial is underway by the NeuroRecovery Network (funded by the Christopher & Dana Reeve Foundation) that is developing and expanding access to activity-based therapies and to determine their effectiveness on improving function, health, and quality of life. Further information about some therapies that are used in some activity-based programs, including functional electrical stimulation and locomotor (walking) training (both with and without body weight support) are summarized on SCIRE, Spinal Cord Injury Research Evidence

When starting an exercise program, it is very important to ensure that staff at any centre you exercise at are trained and have expertise in the needs and risks of exercise for people with SCI. This includes an understanding of spasticity, low bone density, pressure ulcers and autonomic dysfunctions. This will ensure the safety of any individual attending such a program.

Ultimately, your decision to participate in an exercise-based rehabilitation therapy program should be part of a discussion with your SCI health care providers, enabling you to consider all of the benefits and risks that participation may involve with those who best understand your specific condition.

More Information

If you are considering participating in activity-based recovery programs, click here for additional resources.

Updated 17 February 2015 (version 1.0)


References

Systematic Review of Activity-based Interventions to Improve Neurological Outcomes After SCI January 1998 - 2009. Deborah Backus, Shepherd Centre, Atlanta. Accessed Online February 7 2015:
http://www.bu.edu/drrk/research-syntheses/spinal-cord-injuries/activity-based-interventions/ Boston University Centre for Psychiatric Rehabilitation Disability Research Right to Know.

Activity-based Therapies in Spinal Cord Injury: Clinical Focus and Empirical Evidence in Three Independent Programs. Michael L. Jones, PhD, Eric Harness, CSCS, CSRS III,2 Paula Denison, PT, OMPT, Candy Tefertiller, DPT, ATP, NCS, Nicholas Evans, MS, and Cathy A. Larson, PT, PhD Top Spinal Cord Inj Rehabil. 2012 Winter; 18(1): 34–42.doi: 10.1310/sci1801-34

Resources on activity-based recovery programs

Resources on Activity-based Recovery Programs

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 If you are thinking of participating in an activity-based neural recovery program, here are some important questions to consider and discuss with people at the clinic and your health care team:

> Is it safe? Private clinics are not subject to the same evaluation and certification bodies that hospital or health research institutes are subject to. Ask questions about what they do in case of emergency, and whether the equipment they use is regularly inspected and serviced.

> Are the claims of effectiveness being made realistic? It is not possible for anyone to guarantee recovery of function for those who participate in these programs. Ask questions about what to expect and set realistic goals. If questions or suggestions about your medications or medical management arise while participating in such a therapy, we suggest you discuss this with SCI physicians or clinicians before making any significant changes independently. 

> Is the intensity of the therapy right for me? Physical activity and exercise is a very important part of wellbeing and health after SCI, however complications of SCI can be worsened through high intensity workouts, for example, worsening of spasticity, skin irritation leading to risk of pressure sores, and episodes of autonomic dysreflexia. 

> Does the staff have experience and education needed to work with SCI clients? Make sure the staff conducting or supervising your therapy are trained in SCI complications and concerns. Consider whether exercise program staff are certified or regulated by a licensing board which requires regular training/continuing education and has a process for complaints and accountability. 

> Is the cost worth it for me? Private clinics are often not covered by public health programs or other medical insurance, and costs can become significant with long or intensive therapy regimens. Consider the additional costs such as travel, and accommodation, especially if the private clinic lies outside of your community.

Exercise is an important part of staying healthy

It is important to have a clear understanding of the likely results of this type of treatment, as there is not yet enough research to indicate it is effective. Work with your health care team to ensure private activity-based therapy is safe and appropriate for you, and carefully consider its benefits, risks and costs. Check out our list of SCI fitness centres and services for more on what’s available near you.


SCI exercise and fitness centres near you 

Look in your area for centres that are supported by universities and medical centres, or run by certified professionals who are experienced in SCI, such as physiotherapists and exercise physiologists. Some centres we know about or are affiliated with include:

> Physical Activity Research Centre (PARC) at ICORD (UBC/SCI-BC, Vancouver, British Columbia), a spinal cord injury fitness and research centre offers state-of-the-art fitness equipment designed with SCI in mind, and on-site support to enable people with SCI in the Vancouver area to participate in physical activity. icord.org/parc

> Power Cord Exercise Program (Brock University, St. Catherine’s, Ontario) has specialized exercise equipment, on-site support and is overseen by SCI researchers. brocku.ca/health-well-being/power-cord-program

> MACWheelers (McMaster University, Hamilton, Ontario) is an adapted exercise program at McMaster University in Hamilton, Ontario, with one-on-one assistance from a student volunteer to support participants to carry out their exercise programs on innovative adaptive fitness and robotic gait training equipment. pace.mcmaster.ca/programs/mac-wheelers

> The SCI Fitness and Wellness Centre (University of Calgary, Alberta), is a personalized fitness program for people with SCI that is also affiliated with SCI Alberta. It has specialized exercise and assistive equipment and fitness coordinators to support your exercise routine. sci-ab.ca/programs_services/fitnesscalgary

> Get in Motion (McMaster University, SCI-BC and SCI-Ontario) is a free SCI physical activity counselling service for Canadians designed to provide you with the information and support you may need to recognize and meet, your personal physical activity goals. All physical activity counselling is done over the telephone and is provided by specially trained peers with a physical disability. sciactioncanada.ca/get-in-motion.php

If specialized SCI-specific exercise rehabilitation gyms are not available in your area, contact your rehabilitation physician, physiotherapist or occupational therapist for more information on how to access adaptive equipment and exercise facilities in your area.

For more information on some of the individual therapies included in some activity-based recovery programs, consult Spinal Cord Injury Research Evidence (SCIRE), a web-based summary and critical review of existing scientific literature on a broad range of topics in SCI rehabilitation. SCIRE resources are public but have been designed for use by clinicians and researchers.

Do you have an SCI?

Do you have an SCI?

This section of our website provides a brief overview of spinal cord injury and will point you towards some useful community resources that you can tap into to find support, get involved in sports and recreation in your community or participate in research. It also provides information on what you should know before you get involved in therapies like stem cell transplantation or activity-based neural recovery programs.

Learn more:

Rick's Message

A letter from Rick Hansen

What is SCI?

A brief overview of spinal cord injury

Get Support

Find a community organization nearest you offering emotional and physical support

Get Active

Find community organizations nearest you offering adapted sport and recreational activities

Participate in Research

What you should know if you are considering participating in a clinical trial and a listing of current studies

Activity-based Neural Recovery Programs

Our position on activity-based therapies and what you should know

Stem Cell Research

Our role in stem cell research and what you should know

Participate in Research

Participate in Research

What you should know if you are considering participation in a clinical study

Deciding to participate in a research study takes careful consideration. There is the commitment and the practical issues such as transportation to factor in. However, many people who take part in SCI research report a sense of accomplishment that comes from knowing they have personally contributed to a body of knowledge that promises to result in improved quality of life for all people with SCI, and ultimately, a cure.

We would like to stress the importance of doing your due diligence prior to participating in any research study, particularly clinical trials dealing with new, untested experimental therapies. 

A number of experimental therapies are being introduced into clinical practice without a valid clinical trial program being completed, leaving their safety and efficacy untested. This is a great concern to researchers, clinicians and, most importantly, people with SCI.

In order to establish a set of guidelines for the design and conduct of valid clinical trials for SCI, an expert panel of researchers and doctors with extensive scientific and clinical experience in SCI was formed in 2004. The panel, supported through the ICCP (International Campaign for Cures for spinal cord injury Paralysis), developed a set of four papers outlining the guidelines for the conduct of SCI clinical trials, which were published in the journal Spinal Cord. In addition to these peer-reviewed publications, the panel summarized these guidelines in an easy-to-read booklet which you can download from the ICORD website.

In addition, we also provide more information on stem cell treatments and activity-based neural recovery programs. We encourage you to read these sections if you are considering participating in one of these activities.

Below are some additional resources for participating in research trials. It is important that you do your due diligence before participating in any research study.

Research Listings – By Province

Last updated: 15 January 2016

British Columbia

International Collaboration On Repair Discoveries
ICORD is an interdisciplinary research centre, that studies the development of effective strategies to promote functional recovery after spinal cord injury. Visit ICORD’s research studies listings if you are interested in participating in their research.

> Spinal Cord Injury - British Columbia
SCI-BC is a not-for-profit organization dedicated to helping people with spinal cord injuries, and related disabilities, adjust, adapt and thrive. SCI BC’s Infoline Service includes information about participating in research. 

Alberta

> Spinal Cord Injury Alberta
SCI-AB is a website detailing SCI trials in Alberta. Researchers in Edmonton and Calgary are recruiting participants for studies on acute and rehabilitation interventions, as well as treatment of secondary complications. 

> University of Calgary Spine Program
The Spine Program is a multidisciplinary program dealing with the care of individuals affected by conditions and diseases of the spine and spinal cord. For more information, contact Ish Bains, Surgical/Clinical Research Associate, ish.bains[at]albertahealthservices.ca, (403) 944-4334 or visit uofcspine.ca.

Ontario

> Spinal Cord Injury Ontario
SCI-Ontario is a community organization providing support and services to people with SCI in Ontario. Their website also lists research studies recruiting participants by looking up your region, or by keyword. 

end faq

 

Additional Information

Health Canada, through its Clinical Trials Database, is providing to the public a listing of specific information relating to phase I, II and III clinical trials in patients. The database is managed by Health Canada and provides a source of information about Canadian clinical trials involving human pharmaceutical and biological drugs. For more information, visit hc-sc.gc.ca/dhp-mps/prodpharma/databasdonclin/index-eng.php

Clinicaltrials.gov is a US-based website providing information about current clinical trials and research studies around the world. For more information, visit clinicaltrials.gov/.

Unite 2 Fight Paralysis is a US-based grassroots SCI non-profit organization that hosts an annual consumer-focused SCI research conference called Working2Walk. They maintain a list of global SCI Clinical Trials on their website. For more information, visit u2fp.org.

Atlantic Mobility Action Project (The Mobility Project) is a multi-disciplinary research collaboration based in Atlantic Canada, led by spinal cord researchers at Dalhousie University. Working from the molecule to the clinic to the community, Mobility Project researchers are seeking and testing new ways to preserve function after spinal cord injury, to treat and prevent pain, to optimize mobility, and to help individuals with SCI get the most out of life. For more information, visit amap.ca.

Center for Information and Study on Clinical Research Participation (CISCRP) is a first-of-its-kind nonprofit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research and the role each party plays in the process. For more information, visit ciscrp.org.

It Starts With Me is a website about clinical trials that was developed by patients and caregivers who have participated in a clinical trial or have had a loved one participate in a clinical trial and by people who work in clinical trials and research. The website tells you everything you need to know about clinical trials, things to think about or ask before you decide to participate, your rights as a person who is volunteering in a clinical trial, and has a glossary of terms for you. For more information, visit http://itstartswithme.ca/.  

 

National

National Organizations

In addition to SCI Canada, there are several other programs and services across Canada that can support you on your journey. Below are a few resources to help get you started. 

Advocacy and Support

Abilities Canada

Ability Online: Ability Online Support Network is a vibrant online community for youth and young adults of all abilities (Parents and Professionals welcome too). Membership is free and the online experience is safe, secure & monitored.

Active Living Alliance for Canadians

Canadian Association of Professionals with Disabilities 

Canadian Centre on Disability Studies

Canadian Disabled Individuals Association

Council of Canadians with Disabilities 

DisAbled Women’s Network of Canada

Independent Living Canada

Arts and Entertainment

Access 2 Entertainment

Kickstart – Disability Arts and Culture

Employment and Skills Training

Canadian Council on Rehabilitation and Work

Canadian Society for Social Development

Equipment and Assistive Devices

Tetra Society of North America

Federal Income Taxes and Benefits

Medical and Disability-Related Income Tax Information

Canada Pension Plan - Disability Benefits

Registered Disability Savings Plan (RDSP)

Disability Tax Credit

Housing and Home Renovation

Canada Mortgage and Housing Corporation

    • FlexHousing: CMHC's FlexHousing™ is an innovative approach to home design, renovation and construction that is able to adapt and convert affordably as a household's lifestyle and needs change. As the needs of the household occupants change, ideally the floorplan, amenities and services of the home can be easily, and cost-effectively adapted.
    • Residential Rehabilitation Assistance Program (RRAP) On-Reserve: RRAP On-Reserve offers financial assistance to First Nations and First Nation members to repair substandard homes to a minimum level of health and safety.

Transportation and Travel

Planat: Planat celebrates and encourages accessibility by providing detailed information that helps you navigate the world.

AccessNow: This site uses crowdsourcing to pin-point the accessibility status of locations on an interactive map. Search for specific places or browse to see what is nearby with the accessibility features you need.

 

end faq

 

 

 

 

 

Get Support

Get Support

guyinkitchen

There are several community organizations offering physical, emotional and financial support for people with spinal cord injury.

 

Sustaining a spinal cord injury will result in many significant changes in your life – your home may need to be renovated, you may need to retrain yourself for work, and you may require certain assistive devices to perform everyday tasks. The good news is that you don’t have to do it alone. There are many government services, non-profit organizations, and corporate charitable endeavours that can provide you with financial, emotional, and physical support.

Resources

If you have any questions about living with a spinal cord injury, where to find support or care, our partner organizations nearest you provide trained information specialists who can help you with a variety of questions and provide follow-up to ensure you find the information you need. Here are a few local resources: 

Spinal Cord Injury BC Infoline (Canada), 1-800-689-2477 (9am-5pm PST, Monday-Friday) or 

Spinal Cord Injury Ontario Information Services (Canada), 

Craig Hospital Nurse Advice Line (USA)

United Spinal Cord Resource Centre (USA)

Community Organizations

Spinal Cord Injury Canada (formerly Canadian Paraplegic Association) is a federation of many provincial SCI community organizations throughout Canada which provide a variety of services and programming, such as peer support programs, information resources and emotional and vocational counselling for people with SCI and their families. There is a provincial SCI community organization near you which can provide you with information and support - to link to the organization nearest you, click on your province below.

> British Columbia - SCI BC

Alberta - SCI Alberta

Saskatchewan - CPA (Sask)

Manitoba - CPA Manitoba

Ontario - SCI Ontario

Quebec - Mémo Québec

Newfoundland and Labrador - SCI Newfoundland and Labrador

Prince Edward Island - SCI Prince Edward Island

New Brunswick - Ability New Brunswick

Nova Scotia - CPA Nova Scotia

In addition, here is a link to national organizations providing services and information for Advocacy & Support, Arts & Entertainment, Employment & Skills Training, Equipment & Assistive Devices, Federal Income Taxes & Benefits, Housing & Home Renovation and Transportation and Travel.

 

Get Active

Get Active

skiier

There are many adapted sports you can try, like this sit-ski!

 

Sports and recreation activities provide a means of reintegration into the community following a spinal cord injury, an opportunity to make new friends while receiving invaluable peer support, and health benefits through physical activity. Whether it’s a once- a-week pick-up basketball game, or a lifelong passion that results in a Paralympic gold medal, participating in adapted sports can greatly increase your quality of life. Here are a few contacts to get you started. 

Physical Activity Guidelines for Adults with SCI  

Physical activity plays a critical role in overall health. The loss of fitness and independence associated with physical inactivity greatly impacts quality-of-life and community participation for people with SCI. In fact, the leading causes of death among people with SCI are chronic diseases, such as heart disease or type 2 diabetes, which are often caused by physical inactivity. Physical Activity Guidelines for Adults with SCI are the first evidence-based guidelines to be developed specifically to support people with SCI in living healthier, more active lives. Visit the SCI Action Canada website to view the full guidelines.

Canadian Wheelchair Sports Association (CWSA)

The CWSA is a national sport organization representing wheelchair athletes which provides a national link for the development of wheelchair athletes and sports, at all levels and in all areas of the country. Provincial affiliates are linked on the CWSA website.

Wheelchair Basketball Canada

Wheelchair Basketball Canada is the national sports governing body responsible for the organization of wheelchair basketball in Canada. It is a non-profit, charitable organization that is the Canadian member to the International Wheelchair Basketball Federation. Click here to find your provincial affiliate for more information about wheelchair basketball clubs in your area. 

Bridging the Gap

Bridging the Gap is a program specifically designed to help you become aware of the sport and recreation options available, and to try out wheelchair sports of your choice. Bridging the Gap hosts Have-a-Go Days that provide opportunities for individuals to experience a variety of wheelchair sports in a fun, supportive atmosphere. Current wheelchair athletes volunteer their time to demonstrate the sports and to let participants know about clinics and programs that are available to them. For information on Bridging the Gap programs in your community, click here

Canadian Association for Disabled Skiing

The Canadian Association for Disabled Skiing (CADS) helps individuals with living with disabilities lead richer and fuller lives through active participation in recreational and competitive snow skiing and snowboarding. To find information about CADS programs in your province, click here.

 

 

The Rick Hansen Institute is a Canadian-based not-for-profit organization that drives innovation in spinal cord injury research and care. We strive to improve the lives of people living with SCI in Canada and around the world.

Learn more >

 

FEATURE STORIES

Cover Action Plan

Just released! Praxis Action Plan

The Action Plan was developed as a direct result of stakeholders' interest and commitment to further unify the SCI community as we work towards our collective goal of moving research into action and providing concrete solutions for people living with SCI. More >

 

 

Jack hockey sm

Rick Hansen Institute pledges support to prevent spinal cord injuries in hockey

RHI and Parachute's partnership supports the prevention of spinal cord injury and increased safety in hockey, especially amongst youth. The Institute, a leader in spinal cord injury research and innovation, has pledged financial support to Parachute for the Canadian Ice Hockey Spinal Injury Registry, an existing registry of spine and spinal cord injuries sustained in hockey games. More >

  

RHI ONF UT AnnouncementRick Hansen Institute and Ontario Neurotrauma Foundation announce Fellowship at the University of Toronto Department of Physical Therapy

Postdoctoral fellowship established in honour of Rick and Amanda Hansen's contributions to spinal cord injury research and care. More >

OUR  PROGRAMS

Cure

 

Cure

Generating knowledge and establishing treatments that will lead to cures for paralysis after SCI

Care

 

Care

Establishing best practices to optimize and standardize care

Commercialization

 

Commercialization

Facilitating increased investment in innovative technologies

Consumer

 

Consumer

Engaging people with SCI, improving awareness and enhancing opportunities