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

 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?

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:

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

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 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. 

Get Support

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

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.

Sledge Hockey

Sledge Hockey (para hockey) follows the same rules as ice hockey, and offers a challenging workout in an exciting, team environment. Players sit on a sledge, which is a narrow platform with skate blades on the bottom, and propel themselves using two specially constructed hockey sticks with picks on the end. Players wear full hockey gear and the sledges can be adapted to meet the individual needs of each player. Click here to find information about sledge hockey clubs in your area.