Unlimited care and assistance for stroke survivors and caregivers is something the University of New Mexico dedicates itself to each and every day. That is an unwavering dedication which continues on and off campus.
UNMH Neurology Stroke Team Member Felicia McDermott and UNM Speech & Hearing Sciences Speech-Language Pathologist and Associate Professor Jessica Richardson just took that effort to the great outdoors: Glorietta Adventure Camps.
McDermott, through the local stroke survivor support group she hosts, learned about the nonprofit and its yearly camp focused on education and stroke survivor support. She made a call to the USA National Board of Directors to explore the Land of Enchantment as a space for this rally of recovery. From there, the tours made it clear.
“Several sites were visited, including Tamaya Resort, but it was decided quickly that Glorietta provided the perfect space at a reasonable price and was a perfect getaway close to home,” Richardson said.
So 28 campers and 22 volunteers made their way to a classic summer camp getaway from Sept. 22-24, all bound by the same calamitous experience, all connected through a strength to move forward.
“Camp is designed for the survivor, caregiver, and family members. Many of these families have not been on vacation since the stroke so camp provides the opportunity for them to enjoy time with other families and members of the stroke community. Adaptations were made to activities so everyone could participate regardless of physical disability,” McDermott said.
“Additional supports were provided to accommodate other invisible disabilities too, such as speech, language, and cognitive challenges that are common after stroke,” Richardson said.
It’s important to note that while many of these campers are stroke survivors who may be recovering from mental and physical impairments, there was no shortage of opportunities because of that. The Retreat & Refresh Stroke Camp offered hiking, campfires, music, s’mores and even ziplining.
“So many of the attendees - survivors and caregivers - never thought they would do any of these activities ever again, and for some, there were many firsts; things they never did before their stroke and certainly never thought they would do after,” Richardson said.
“So many of our survivors braved the zipline drop and their bravery and courage shined through! Luz is one of our older survivors. Her story is a true survival story filled with many challenges including the death of her husband shortly after her stroke,” McDermott said. Seeing her on that zipline was a true testament to her bravery and strength as she conquered her fears and did it even with her stroke deficits.”
Alongside the traditional outdoor adventure camp activities, there were also skits, drum circles, singalongs, discussion groups and lots of reflection and introspection.
“Of all of the activities the group sessions were extremely impactful for everyone. We were able to separate care partners from the survivors; it gave everyone the opportunity to speak freely,” McDermott said. “The caregivers had the opportunity to let their guards down and really express the challenges and changes of going from a husband/wife/child to a full-time caregiver, part-time caregiver.”
“Much of the conversation in the survivor groups was about living post-stroke, persevering, coping, and educating one another about their different challenges post-stroke, as everyone had a different profile of post-stroke impairments. An important part of the discussion was also about recognizing the trauma experienced at the time of the stroke. They provided so much encouragement to one another," - UNM Speech & Hearing Sciences Assistant Professor Jessica Richardson
Volunteers like McDermott and Richardson also assisted caregivers–ranging from children, siblings, parents, spouses, all full-time to part-time–with daily routines such as medications, blood pressure checks, and safe ambulation around camp.
“We want our local survivors and their families to know that we care. We see that there is a greater need for community and resources for these families. So, how can we be more inclusive of this very special population of brain injury survivors, and how can we do more to improve the quality of life for them and their loved ones? By getting out into the community, sharing the knowledge we have, and listening to their needs, we can accomplish so many things. This is what our stroke team wants to accomplish with these types of programs,” McDermott said.
Alongside plenty of meals, massage therapy sessions and outside experiences, the bonding was immense. That’s especially key within this community–ensuring connections stay in place beyond just around the campfire.
“New friendships were formed. They already have their own texting groups or WhatsApp groups. Smiles just grew and grew; from shy, tentative, ‘what the heck is going on’ smiles on day one, to full-on smiles of love and amazement by the last day. Tears that needed to be shed also flowed freely and without shame or stigma,” Richardson said.
This camp partnership is a testament to not only UNM’s role in supporting anyone during a difficult time, but also its openness to testing new options and creating new relationships to expand resources.
“Our partnership - between UNMH Neurology Stroke Team and between the UNM Brain Crew made it possible for people with post-stroke aphasia who might not normally be able to participate or attend stroke camp be able to do so, and do so fully,” Richardson said. “We just received feedback from the post-camp evaluation that tells us very clearly that we had a huge and positive impact in people's lives - survivors, caregivers, and volunteers.”
Looking at photos from a weekend of life-changing learning and fun, McDermott and Richardson think it’s just as important to spread awareness about strokes and stroke recovery.
“Through this and other outreach projects, we can bring stroke awareness to the community. The more people that know about stroke, the more people we will be able to save and hopefully limit their disabilities or prevent strokes from occurring at all,” McDermott said.
Part of that awareness is understanding that while this camp is incredible, it’s just one of the many pathways that can be expanded for stroke survivors.
“Resources to help people participate in life post-stroke are scarce, more so in New Mexico than most other places in the United States,” Richardson said. “It is obvious that they want to participate and contribute, and that they can participate and contribute, but without accessible communities and without informed community members, their life participation is significantly or completely limited.”
“New Mexico needs more resources for stroke survivors and caregivers and camp is one way to highlight the need for this. Camp is not free so having sponsors is also paramount to keeping this camp in New Mexico for many years to come,” McDermott said.
While McDermott and Richardson work to recruit new sponsors and campers, the countdown is already on, hopefully for next year.
“Hope, peace, happiness, friends, family and joy were just some of the words campers used to describe what camp meant to them in one word. We talked about the positive experiences campers had and many shared their hopes and dreams for camp next year and what they hope to accomplish before then,” McDermott said.“Some set a goal to be more independent, some to even walk again. Everyday was impactful and everyone who attended left with more than they came with. Family, friends, renewed hope and a will to fight. It was truly beautiful to see. There were so many moments. The amount of laughter and genuine smiles was more than I could have ever asked for.“
“We cannot say enough positive things about our experience working with United Stroke Alliance, and we hope it is just the beginning of a longstanding relationship,” Richardson said.
There are plenty of ongoing events to improve the lives of people post-stroke thanks to the UNMH Stroke Team and the UNM Brain Crew within UNM Speech & Hearing Sciences. Head to either of their websites to learn about weekly and monthly support groups, upcoming events, aphasia-friendly info materials and more.