Cyber Support

Time Magazine published an online article titled “The Power of the Peer” (available only on Apple News+). The article grapples with the question: “Can hearing about someone else’s life improve your own?”

Spinal cord injury (SCI) warriors would probably answer “Yes.” The life-altering fallout from an SCI envelops physical, mental, emotional, and spiritual upheaval. Ask around “the SCI Rooms,” and the consensus is that the unique nature of an SCI becomes the tie that binds.

Supportive Care

Most inpatient rehabilitation hospitals offer an SCI Support Group. Nancy Lokey, RN, CRRN, CBIS, has run Penn State Health Rehabilitation Hospital’s group for 15 years. “The group was started 35 years ago by two other RNs,” she says.

It has 182 members with an SCI that received an invite. “Active members vary from year to year,” says Lokey. “Currently, we have about 15 to 20 active members.”

Penn State’s group focuses on peer-to-peer talk mentorship, with Lokey providing guidance. They meet via Zoom twice a month, and the group has developed an easy camaraderie that is also eager to welcome newcomers.

 

Online Action

In Oregon, a novel approach to group therapy is beginning. Through ZebraFish Neuro (ZFN), Barry Moore (ACSM Certified Inclusive Fitness Trainer) started an online, SCI-based exercise support group explicitly geared for injured central nervous system athletes fighting hypertonicity (high spasticity).

Moore, originally from Dublin, Ireland, had experience with online group coaching and was confident he could transfer his knowledge to the neuro community.

ZFN offers clients a six-week, 12-session online coaching plan. Six sessions are geared toward eliminating high tone. “To nurture the personal connection between clients,” says Moore, “each week’s second session is open for discussion on any topic any participant wanted to address—a support group.”

There’s power in being around people who “get” what you’re dealing with.

Unstructured Structure

Each hour-long, high-tone movement class with ZebraFish begins with a mental body scan. Moore guides the class on “checking in” with their bodies, from head to toe, acknowledging any areas of stress or spasticity.

He always includes a “CNS Soother” (Central Nervous System Soother) to encourage more relaxation. These are free choices and include breathwork and scalp massage. Moore attempts to ensure the prescribed workouts are suitable for everyone and offers each person feedback during the class.

Penn State’s Lokey cites attendance and programming as her main challenges.

Penn State’s Rehab group is supported financially with a budget funded partially by grants that Lokey has worked hard to get awarded to the group.

Fostering Friendships

Both Lokey and Moore say witnessing their respective groups’ growing friendships and support is rewarding. Peers may offer more attainable and softer-touch support for those who don’t want or require clinical treatment.

Marina V. joined the high-tone group for hypertonicity strategies. “For me, the resiliency of the individuals in this group is a great gift,” she remarks. Each [brings] their history, personality, and vantage to share.”

She also points out the cost-effectiveness of the online group training, which allows her to do more weekly sessions.

Surprisingly Successful

Moore admits he’s surprised by the success of the online coaching. “I didn’t think we expected such great results across the whole group,” he says. “Every week, we’d hear of some win or accomplishment.”

Those include:

• Improved response/tolerance to infection;
• Improved baseline tone;
• Improved activation in previously inaccessible muscles;
• Increased autonomy of symptom management.

ZFN’s High Tone group has connected people from all parts of the United States, “from the coastline of the PNW in Oregon to the desert heat of Arizona and over to our ‘unofficial’ cohost in Philadelphia!” exclaims Moore. “This group class opened my eyes to how beneficial an online group can be, especially for those in more rural areas who wouldn’t have this type of opportunity in person. As we’d all say in the group, ‘There are no little wins. All wins are big wins in this journey.’”

Online Group “Tools of the Trade”

Penn State Rehab offers several in-person activities a year.

“I can apply for and receive grant monies,” says Lokey. Upcoming meetings include a Holiday Party at the Hershey, PA, rehab, and an adaptive skiing event in the Poconos.

Grab your Squish Ball!

This slightly sticky, deflatable ball is essential for floor-based online exercises. While you can forego the purchase and use pillows, this orange ball’s low price and high workout value make it a must!

Learn as You Go!

Penn State Rehab’s Nancy Lokey brings as many educational programs to the group as possible. Citing the nature of the online workout, Moore says his goal is to impart knowledge his clients can build upon daily. “Our “CNS Soothers” has everyone learning more about the parasympathetic nervous system,” he says.

Eating during Group? Yes, please!

Neither of the groups profiled stands on formality. Members “wheel” in close to the appointed time, some with dinner. Nearly everyone has a water bottle. Many Penn State members are comfortable enough to move around their homes with the A/V on, participating from wherever they are in the room.