Technology Partnerships and Therapeutic Recreation.

What do the National Aeronautics and Space Administration and a therapeutic recreation specialist have in common? The answer, quite simply, is collaborative research in the areas of cooling and multiple sclerosis. This research partnership has been in process since 1996, when the Rocky Mountain MS Center and NASA completed their first collaborative research protocol. The results of this study are soon to be published in a peer-reviewed rehabilitation journal. Two additional research studies have been completed to date. The cooling research at the Rocky Mountain MS Center was coordinated by a therapeutic recreation specialist who directs a specialized adult day program for individuals with multiple sclerosis and other neurological disabilities.

How did this unlikely partnership between NASA and the Rocky Mountain MS Center begin? With a presidential mandate that NASA share its technological resources with outside agencies. As part of this mandate, numerous "manuscripts of understanding" were developed. NASA has now established these manuscripts with numerous human service agencies in an attempt to refine and adapt their technology for the advancement of biomedical research.

Tapping into the brain trust of the agency that has taken us to the moon and Mars is pretty heady stuff. So how did a therapeutic recreation specialist get involved in this relationship? Some of it was pure luck, being at the right place at the right time. And some of it was the active pursuit of an opportunity that had the potential to benefit people living with a disabling condition.

As NASA began to explore potential partnerships and opportunities for technology transfer, it reviewed an early attempt at technology transfer dating back to the early 1970s. NASA provided a liquid cooling garment, a type of space-suit design, for use with multiple sclerosis patients in a very small study conducted at UCLA. In order to perform activities outside the protection of a space vehicle, an astronaut must be protected by a pressurized space suit. The suit, however, traps the body's metabolic heat, which must be removed, or the body temperature will quickly rise to dangerous levels. To solve this problem, NASA scientists refined a concept originally developed by the British to cool high-performance aircraft pilots who wore protective suits. Known as "Liquid Cooling Garments" (LCGs), these cool suits contain a network of small tubes that are held against the body. Water, chilled by a cooling reservoir outside the suit, is pumped through the tubes. Heat transfer between the skin and cold water in the tubes removes the body's metabolic heat. The resulting warm water is pumped to the cooling reservoir, chilled, and returned in a continuous loop. First used in the Apollo missions, liquid cooling garment technology has since been adapted for many uses where people must work in hot environments. NASA scientists continued to refine and adapt this technology for the advancement of biomedical research. One such application has been individuals diagnosed with multiple sclerosis.

The individuals with multiple sclerosis who used the liquid cooling garment in the early study at UCLA experienced a dramatic improvement in their symptoms. A video of this early study showed an individual who used a wheelchair stand up and walk following cooling.

Unfortunately, the research in clinical cooling for individuals with multiple sclerosis didn't continue. It wasn't until the 1990s that this line of research resumed. NASA and a variety of multiple sclerosis service organizations recognized the need for cooling research and understood its potential to significantly alter the lives of individuals living with the disease.

Those afflicted with multiple sclerosis typically report thermal sensitivity, primarily reporting negative impacts of heat on their functional status and energy levels. When these individuals are overheated from physical exertion, environmental conditions, or fever, they experience a dramatic and sudden worsening of their symptoms. While the mechanisms for this characteristic have not been clearly identified, it has been hypothesized that demyelinated nerve fibers are sensitive to changes in core body temperatures. A rise in body temperature may cause a failure of nerve conduction and the resulting worsening of symptoms. When an individual with multiple sclerosis overheats, he or she may report a worsening of existing symptoms (decreased visual acuity and strength; difficulties with speech, mobility, balance, bladder and bowel control; and cognition), development of new symptoms, and general lassitude or fatigue. Ninety percent of patients report increased fatigue in unspecified warmer environmental temperatures.

While this has an extremely negative impact on all aspects of their lives, leisure lifestyles are significantly impacted by this heat sensitivity. Virtually any activity that involves physical exertion also raises body temperatures. Consequently, individuals with multiple sclerosis have often been advised to adjust their leisure interests accordingly and to "select more passive activities." Afflicted individuals report that the summer months are virtually "lost" time requiring hibernation in climate-controlled environments. Fatigue is the most disabling symptom reported by individuals living with the disease.

Individuals often use their compromised energy to accomplish essential activities, leaving no reserves for leisure activities. Therapeutic interventions for individuals with multiple sclerosis involve management of heat sensitivity and fatigue.

With the stage thus set, the Multiple Sclerosis Association of America embarked upon a pioneering mission to fund major scientific research on the clinical effects of cooling on the disease. On May 23, 1994, NASA signed a Memorandum of Understanding with the MSAA, whereby both groups would cooperate in the application and assessment of NASA's cool-suit technology for the benefit of patients. As part of the assessment, NASA scientists visited centers around the country. One of these visits was to the Rocky Mountain MS Center and its Adult Day Enrichment Program.

The scientists who visited ADEP immediately noted the potential for such a program to conduct cooling research. The director of the program, a therapeutic recreation specialist, immediately realized the potential of cooling technology for individuals attending the program. The partnership resulted in the ADEP program receiving a clinical cooling unit designed by Life Enhancements Technology and provided by the MSAA.

In January 1995, NASA Ames Research Center sponsored a workshop titled "Application of Extravehicular Activity Technology for Multiple Sclerosis." The director of ADEP was invited to attend and subsequently' was asked to present a session, "Measuring Quality of Life for Individuals with MS." While the audience was intimidating -- multiple sclerosis neurologists and therapists from centers around the country, and NASA scientists -- the therapeutic recreation specialist took advantage of the opportunity and even had the audience participate in a leisure education activity.

Research priorities were discussed and protocol development initiated. In thanking NASA and MSAA for the opportunity to participate in the workshop, the therapeutic recreation specialist also continued to express interest in collaborative research. This correspondence proved valuable and led to the agreement to conduct a cooling study at ADEP. The program director agreed to coordinate the study, learned the mechanisms of protocol approval, and recruited subjects for the study. More than 50 individuals with multiple sclerosis in the Denver area participated in this study. Since this original study, two additional research protocols have been completed, and much has been learned about cooling and multiple sclerosis.

Another benefit of this partnership was that the Rocky Mountain MS Center received additional cooling equipment for use with patients. Many of the subjects in the studies noted the benefits they had experienced and sought out resources to obtain personal cooling units.

The Multiple Sclerosis Association of America donated an "NES Lab," a clinical cooling unit from an aborted Navy project, which NASA retrofitted for multiple sclerosis cooling purposes. The NES Lab can cool six subjects concurrently. When the lab was dedicated, the event attracted attention from the media as well as state and federal legislators.

This, as well as numerous additional efforts to demonstrate the benefit of NASA technology transfer, proved successful when, through the federal budget appropriations process, $1 million was added to NASA's budget for multiple sclerosis cooling research.

The Adult Day Enrichment Program is now expanding and renovating to create a permanent home for the NES Lab, a new fitness and cooling center for individuals with multiple sclerosis. This will allow individuals with the disease to participate in aerobic exercise without suffering the consequences of heat liability. In proposing an expansion to the agency's board of directors, and in seeking the funding to complete the project, the involvement of ADEP in this collaborative research created additional support for the project.

The cooling research continues with the involvement of NASA, MSAA centers from around the country, and scientists from the National Institutes of Health. The benefits derived from this unique technology partnership are numerous, significant, and will continue to emerge. Who would have ever anticipated that a therapeutic recreation specialist would partner with NASA scientists, and that the resulting technology transfer would turn out to be such a very "cool thing?"

RELATED ARTICLE: Tips for Developing Technology Partnerships

Assess your current technology needs (Individuals with multiple sclerosis need cooling resources).

Identify potential technology resources (NASA designs liquid cooling garments).

Establish contacts and discuss mutual interests and needs (Individuals with multiple sclerosis need cooling; NASA has a mandate to transfer technology, especially in biomedical applications).

Demonstrate your commitment to contribute to the process. Pay your dues (Be willing to provide additional information, research needs, provide presentations, demonstrate what you have to offer the partnership).

Stay in contact. Be persistent. Pursue the opportunities (Follow-up letters and calls).

Respond when opportunities present themselves (Be timely and follow through with your part. This may also involve letters of agreement and a formalization of your partnership).

Publicize and promote the partnership (Technology firms and organizations are eager for these opportunities; this may be a significant aspect of what they hope to gain from a partnership with human services organizations).

Look for, create, and take advantage of "spin-off" opportunities and benefits (New relationships, opportunities, and resources).

Evaluate the outcomes of your partnership and identify what you want and need to do next.

Celebrate your accomplishments.

Karen Wenzel, M.A., CTRS, CLP, director of the Rocky Mountain Multiple Sclerosis Center's Adult Day Enrichment Program in Denver, "Some of it was pure luck, being at the right place at the right time, and some of it was active pursuit of an opportunity that had potential to benefit people living with a disabling condition." Details on this "cool" collaboration begin on page 72.

The motivation behind using computers and computerbased communication in therapeutic recreation is the same today as it was 30 years ago.