Founder of Ebert Family Clinic in Frisco, Colorado at 9000′, Christine Ebert-Santos, MD, MPS spent a part of her Spring 2024 backpacking across Norway:
At 2,469m (8,100 feet), Galdhøpiggen mountain in Norway is not high enough to cause altitude sickness for most people. The 300 mountain peaks over 2000m make Norway a popular destination for downhill skiing and snowboarding, as well as Nordic skiing. The long days of sunshine at this latitude allow skiing in swimsuits and summer clothes in the spring.
Norway also has the largest glacier in Europe, Jostedalsbreem. Briksdalbreen is a finger of this glacier that is a short hike in the Jostedalsbreem National Park. There are 1,600 glaciers covering one percent of Norway. Several have resorts advertising summer skiing for the whole family.
There are 900 tunnels in Norway, including the longest tunnel in the world. Compared to Eisenhower Tunnel in Colorado at 11,112 feet elevation and 1.67 miles long, Laerdal tunnel, opened in 2000, is 15 miles long with pullouts featuring colored lighting to imitate the sunrise. Some of these tunnels, like the one between the airport and downtown Oslo, go as deep as 958 feet underwater. All have phones and excellent cell phone reception. In fact, we experienced excellent reception everywhere in Norway despite the mountains and tunnels, in contrast to my sister’s house in Centennial, Colorado and many parts of Colorado.
Our last night in Norway was special. We drove two hours over narrow roads, through tunnels, over one lane bridges to Ronde Island. With a population of 150, the island is a famous bird sanctuary. We arrived just in time to see the puffins return to their nests at 8 pm. These colorful birds spend their lifespan of 30-40 years flying over the ocean, sleeping on the waves, returning to land once a year with the same mate.
The fact that Norway provides such amazing access to even this tiny town tells me how much they respect individuals. They have an average lifespan of 83 years (76 years in the USA), universal health care, one year paid leave for parents with a new baby, universal pensions, free education through college, daycare for less than $15/day, and much more. How much do they pay in taxes, you might ask? Less than what we pay when you consider the cost of health insurance, day care, school loans, with 60% of Americans who do not have anything saved for retirement.
Hypoxia is a common presentation at the emergency department for the St Anthony Summit Medical Center, located at 2800 meters above sea level (msl) in Colorado. Children under 18 are brought in with respiratory symptoms, trauma, congenital heart and lung abnormalities, and high altitude pulmonary edema (HAPE). Many complain of shortness of breath and/or cough and are found to be hypoxic, defined as an oxygen saturation below 89% on room air for this elevation. Patients who live at altitude may perform home pulse oximetry and arrive for treatment and diagnosis of known hypoxia. Extensive and ongoing analysis of the data from children found to be hypoxic in the emergency department raises many questions, including how residents vs nonresidents present, how often these cases are preceded by febrile illness and what chief complaint is most frequently cited.
Understanding the presentation of hypoxia in children at altitude can help ensure that healthcare providers are following a comprehensive approach with awareness of the overlapping symptoms of HAPE, pneumonia and asthma. Below is a graphic summary of 36 cases illustrating the clinical, social and geographic factors contributing to hypoxia at altitude in residents and visitors. A further analysis of over 200 children with hypoxia presenting to the emergency room at 9000 feet is underway including x-ray findings.
The graphs below were created by the author, using data extracted directly from a review of patient charts (specifically, those of children presenting to the local hospital in Summit County, Colorado (9000 feet) with hypoxia).
Graphs 1-4 show chief complaints of cough (CC) and shortness of breath (SOB) compared by age and by residence (residence includes altitudes above 2100 msl, the front range (a high altitude region of the Rocky Mountains running north-south between Casper, Wyoming and Pueblo, Colorado) averaging 1500 msl, and out of the state of Colorado)
Graphs 5-6 show presence of fever by residence and by age
Graphs 7-8 show presence of asthma by residence and by age
Graphs 9 and 10 show lowest oxygen by age at admission and lowest O2 organized by days spent in the county (residents are excluded from this data).
Erin Snyder is a new graduate physician assistant who graduated this fall after spending her final rotation in Frisco with the Ebert clinic. She is now working in pediatric hematology at Children’s Hospital Colorado. And her free time she enjoys skiing, hiking and spending time with her cat Charlie.
Type 2 Diabetes (T2D) has emerged as a global concern, with its prevalence steadily increasing. The test of choice to diagnose and monitor T2D is hemoglobin A1c (HbA1c), which tracks average blood sugar levels over the last three months. Normal HbA1c levels are below 5.7%, 5.7% to 6.4% indicates prediabetes, and 6.5% or higher indicates diabetes. Within the prediabetes range, high HbA1c levels increase the risk of developing T2D. Additionally, levels above 6.5% correlate with greater risk for diabetes complications.1 Fasting Plasma Glucose (FPG) is an additional test that indicates an immediate blood sugar level following a period of fasting. Normal FPG levels are below 100 mg/dL (5.5 mmol/L), 100 to 125 mg/dL (5.6 to 6.9 mmol/L) suggests prediabetes, whereas 126 mg/dL (7 mmol/L) or higher generally indicates diabetes.2 Because HbA1c provides an overview of blood sugar levels spanning the past 2-3 months, it offers a more comprehensive insight into blood sugar management and is the preferred diagnostic test for T2D.3 Recent studies are unveiling discrepancies between HbA1c and glucose testing, prompting discussions on specific diagnostic criteria for different populations.
People living at high altitude experience unique physiological adaptations, such as higher hemoglobin levels and specific glucose metabolism patterns. Acknowledging these adaptations, a 2017 study by Bazo-Alvarez et. al sought to evaluate the relationship between HbA1c and FPG among individuals at sea level compared to those at high altitude.
The study analyzed data from 3613 Peruvian adults without diagnosed diabetes from both sea level and high altitude (>3000m). The mean values for hemoglobin, HbA1c, and FPG differed significantly between these populations. The correlation between HbA1c and FPG was quadratic at sea level but linear at high altitude, suggesting different glucose metabolism patterns. Additionally, for an HbA1c value of 48 mmol/mol (6.5%), corresponding mean FPG values were significantly different: 6.6 mmol/l at sea level versus 14.8 mmol/l at high altitude.
This significant difference in predictive values suggests potential controversy in utilizing HbA1c as a diagnostic tool for diabetes in high altitude settings. Using HbA1c at altitude potentially underdiagnoses and under treats patients. To ensure a more accurate diagnosis of T2D at high altitude, reevaluating diagnostic criteria, possibly leaning towards FPG or oral glucose tolerance testing (OGTT) might be necessary.
In conclusion, this study emphasizes the need for careful consideration when diagnosing diabetes in high-altitude regions. Future research is warranted, including studies replicating the findings of the cross-sectional study by Bazo-Alvarez and longitudinal studies exposing the long-term effects of the diagnostic discrepancy of HbA1c in high altitude patients. This additional data will ensure accurate diagnosis and appropriate management of diabetic patients at high altitude.
Sherwani, S.I., et al. 2016. Significance of HbA1c Test in Diagnosis and Prognosis of Diabetic Patients. Biomark. Insights. 2016 Jul; 11: 95-104. DOI: 10.4137/BMI.S38440.
Bazo-Alvarez, J. C., et al. Glycated haemoglobin (HbA1c) and fasting plasma glucose relationships in sea-level and high-altitude settings. Diabet. Med. 2017 Jun; 34(6): 804-812. DOI: 10.1111/dme.13335.
Ambra Saurini is a second-year physician assistant student at Red Rocks Community College in Arvada, CO. She was born and raised in Denver, but Italian is her first language and she spent summers visiting her grandparents in Italy. She received her undergraduate degree in integrative physiology from the University of Colorado at Boulder. Before PA school, she worked as a research assistant in the Sleep and Development Lab at CU and as a medical assistant at Panorama Orthopedics and Spine Center. In her free time, she enjoys trying new restaurants and coffee shops, hiking, and spending time outside with her two-year old daughter, Chiara.
During my last week of a clinical rotation at Ebert Family Clinic in Frisco, Colorado, at 9000 feet, I was thrilled to have the opportunity to interview high altitude resident Karen Terrell with physician Dr. Chris Ebert-Santos. During this time, we were able to discuss high altitude pulmonary hypertension, also known as NAPH. This is a condition that Karen has been living with since 2015. NAPH is condition that can affect people that live above 8,200 feet, more than 140 million people live at this altitude worldwide, including the population of Summit County, where the town of Frisco, Colorado is. Pulmonary hypertension is a group of disorders that will typically be diagnosed during a heart catheterization measuring the mean arterial pressure of the right side of the heart. These disorders are broken down into five groups. High altitude pulmonary hypertension is in group three. The primary symptoms that people first notice is extreme fatigue, difficulty getting air upon exertion, and difficulty engaging in their normal exercise routines.
How long have you lived in Summit County [Colorado], and where did you move from originally?
Karen: I grew up in Nebraska, I moved to New York City as soon as I was old enough to leave home. I went to Boulder for school, and then moved to Denver for work. I went to an Outward-Bound Experience, and I fell in love with this area. I have lived in Summit County over 37 years. My kids were born and raised here; they are now in their 30s.
What are some of the things that you love to do in area?
Karen: I downhill ski, I uphill ski, and I cross country ski. Mountain biking is my passion. I downhill bike, that is where you take the gondola to the top of the mountain and then ride your bike down.
When did you start to have symptoms?
Karen: 2015
What were the symptoms that you noticed first?
Karen: Extreme fatigue and erratic pulse, with or without exertion. By the end of a run, I would be so exhausted that I was practically crawling home.
Do have to go on oxygen at any point?
Karen: In 2018 I started using oxygen at night. I still use oxygen at night. In 2020 I started riding and skiing with portable oxygen. When my oxygen columns fail, so do I. It was also during this time I began to work on nasal breathing night and day. I have been doing research on the importance of nasal breathing and retraining the body on how to take in oxygen. Practicing nasal breathing is especially important when you are using a nasal cannula to get oxygen when you are being active.
https://oxygo.life/oxygo-fit
Dr. Chris Ebert-Santos: The standard is “if you’re 50 and you’ve lived here 10 years and you want to live here for another 10 years you should be sleeping on oxygen.”
Between 2015 and 2018 did you have any other symptoms or worsening concerns?
Karen: In 2017 I applied for life insurance. I was denied as I had what I now know is chronic proteinuria. The nephrologist was perplexed as to why someone who is as active as I am and takes no medication is having this condition. The insurance company essentially told me that they would not touch me with a 10-foot pole. This was the “canary in the mine” that made me think something was not right. In 2018, I had a cardiac ablation. The cardiac ablation corrected the erratic heart rate and relieved my extreme fatigue. However, it did nothing for my oxygen saturation.
You mentioned in 2020 that you started to ski and ride your bike with portable oxygen. Did something happen in 2020, besides COVID?
Karen: You know, with everything that I have going on health wise I have been so cautious that I have not ever had COVID. In 2020, I was at an office visit with my PA. I mentioned that biking and skiing at higher elevation with exertion, that I felt flattened and near-dead. My pulse oximeter showed oxygen saturation of low 70’s. My PA freaked out and thought I had Pulmonary Hypertension (as opposed to HAPH) and sent me to a Denver Pulmonary specialist.
What did the pulmonary specialist tell you?
Karen: When I went to the pulmonary specialist, they said my oxygen numbers were fine at Denver’s elevation. The Pulmonologist advised moving to lower elevation but said there is no knowing how low until I experiment. I have lived in Summit County and raised my children here; my children still live here. Moving was not an option. I started riding and skiing with portable oxygen. When 02 columns fail, so do I. I do have periodic episodes of extreme joint pain resulting from excessive stress/time at desk (10-hr days). However, I try to eliminate the pain by remaining active using oxygen when I need it. If I don’t use oxygen to sleep, I feel half dead the next day and it is difficult to wake up the next day. I worry about the long-term effects of the hypoxia, however I continue to monitor. I am hoping to see more research done in the area of high-altitude pulmonary hypertension.
Jennifer Wolfe is in her final semester of Nurse Practitioner school at Georgetown University. She was born and raised in Missouri and attended The University of Missouri where she graduated with a bachelor’s degree in psychology. After attending Mizzou she married her husband who was active duty in the US Navy. They traveled to many bases and had two boys before calling Denver their home in 2011. Jennifer received her BSN from Denver College of Nursing. Jennifer has spent 7 years as a nurse in the emergency department of several level II trauma centers before starting at Georgetown as a part of the Family Nurse Practitioner program. Jennifer enjoys spending her free time with her family and their three dogs.
According to recent research, nearly thirty million individuals in the United states have been diagnosed with diabetes. Due to this higher rate of prevalence, more people are aware of the basic information surrounding a diabetic diagnosis. However, there are common misconceptions surrounding the average diabetic patient, with most information focused on the more common form of diabetes, type 2. Although the majority of diabetic patients in the United states do have type 2 diabetes, an estimated 5 to 10% of people with diabetes actually have type 1. Type 1 diabetes is an autoimmune disease in which the body’s own immune system destroys the cells in the pancreas that make insulin. Insulin is a very important hormone that enables sugar to enter the bloodstream in order for it to be used by the cells for energy, as well as stored for later use. Unlike type 2 diabetes, there is no cure for type 1 diabetes and the treatment options are limited; the only management for this form of diabetes is insulin therapy. The most common therapeutic regimens for type 1 diabetes includes constant monitoring of blood sugars using a glucometer or continuous glucose device. These devices combined with either syringes, preloaded insulin pens, and/or an insulin pump are the means to survival for type 1 diabetics. However, there have been many advancements in the ways physicians are able to help their type 1 diabetics control and manage their disease. Because of this, type 1 diabetics are able to live their lives with far less complications. When desired, type 1 diabetics are able to compete at high levels of activity and complete amazing feats, such as wilderness activities.
It is inspiring to know how type 1 diabetics are still able to perform in high intensity activities such as ultramarathons, ironmen/ironwomen, as well as professional sports, to name a few. However, with such strenuous activity, it is important to note that diabetes control is more challenging. Of note, it cannot be stressed enough, that baseline diabetic control is already challenging in itself. By adding the addition of a strenuous environment and activity, diabetes control becomes more difficult as it is multifactorial.
To help address this issue, the Wilderness Medical Society (WMS) worked to form clinical practice guidelines for wilderness athletes with diabetes. The WMS gathered a group of experts in wilderness medicine endocrinology, primary care, and emergency medicine to compose these guidelines. These guidelines are outlined for both type 1 and 2 diabetics who participate in mild-vigorous intensity events in wilderness environment with reduced medical access and altitudes greater than or equal to 8250ft; the objective to help individuals with diabetes better plan and execute their wilderness goals. The foundation summarizes their recommendations into pre-trip preparation, including a list of essential items to bring when on your wilderness trip, potential effects of high altitude on blood glucose control and diabetes management, and an organized algorithm to treat hyperglycemia and ketosis in the backcountry.
Effects of High Altitude on Diabetes Management:
At baseline, the various types of exercise activities are broken into aerobic, anaerobic, and high intensity exercise. Each type of exercise utilizes the energy stored in our bodies, in the form of sugar. In a healthy person without any comorbidities, during aerobic activities, glucose uptake into the large muscle groups is increased due to the increase in energy expenditure. To keep glucose higher during this form of exercise, insulin secretion is reduced. Simultaneously, other hormones such as adrenaline, cortisol, and glucagon are released into the system to promote further glucose release from processes such as gluconeogenesis and glycogenolysis.
Again, the body is utilizing its resource of glucose to move to the larger muscle groups to keep them moving and active. During anerobic and high intensity exercise, the same process occurs, but since these forms of exercise tend to be in short bursts, insulin levels tend to rise particularly in the post workout period. This helps to diminish the effects of the counterregulatory hormones and keep blood sugar levels stable. If the athlete is unable to properly regulate insulin secretions during these various forms of exercise, then it is likely that he/she will experience frequent episodes of hyperglycemia. Also, due to the increase in insulin sensitivity in muscles post workouts lasting >60 min, hypoglycemia can also ensue.
In general, the WMS and other research demonstrates brief episodes of high intensity exercise are linked to hyperglycemia for diabetics. On the other hand, longer duration aerobic exercise will cause hypoglycemia. Unfortunately, due to the complex intricacies of glycemic control during exercise, in addition to the individuality of each patient and the multiple variables involved in each wilderness expedition (temperature, altitude, duration, etc.), the definitive guidance for adjustment of daily insulin continues to need refinement. This is why the WMS recommends extensive pre-trip planning with the various tools, research, and supplies that will be needed when planning any form of wilderness adventure.
Pre-trip Prep:
Like all endeavors, preparation is key in order to be better equipped to deal with the majority of future scenarios. Planning is especially important when going on a wilderness expedition. Preparation becomes even more important with the diagnosis of diabetes. The WMS outlines the specific recommendations that should be included as a diabetic wilderness athlete. For example, pre-trip prep should generally include: (1) a medical screening, (2) research of the endeavor and how it may affect glucose management, and lastly (3) essential diabetes-specific medical supplies and backups.
Additionally, according to the American diabetes association, persons with diabetes should discuss with their primary care provider and or endocrinologist before a strenuous wilderness activity. This follow up ensures that athletes are up to date on their screenings, health maintenance labs, and prescriptions needed for therapy. Due to the various ways that diabetes can affect the body, the WMS also recommends that if a patient has cardiovascular involvement, retinopathy, neuropathy, or nephropathy, there should be a more extensive risk assessment by the provider. Although these complications are less commonly seen in high intensity wilderness athletes, adequate histories should be taken to avoid adverse circumstances.
As discussed earlier, altitude accompanied with increased strenuous exercise demands also has various effects on blood glucose management. As it pertains to altitude and blood sugar management in type 1 diabetes, multiple studies have shown an increase in insulin requirements at altitudes above 4000m (13,123′). At this time, researchers are unsure if this finding is due to the effects of acute mountain sickness or hypobaric hypoxia. Therefore, wilderness athletes with diabetes should be aware of the insulin resistance increase at these extreme altitudes. In conjunction with altitude changes, as previously noted, the type of exercise will also play a role in insulin control. Aerobic exercise for longer than 60 minutes can cause a hypoglycemic episode in type 1 diabetics due to the increased muscle sensitization to insulin. Therefore, at altitudes 4000m or above, wilderness athletes will be in a mixed long duration anaerobic/aerobic exercise. With the combination of these factors, there is a counter regulation effect, and the athlete becomes both more sensitive to insulin due to increase duration of exercise and less sensitive due to altitude demands. In order to better predict the effects of altitude combined with exercise, the WMS recommends close monitoring on shorter trips to recognize their specific glycemic trends prior to an extreme high-altitude expedition, as well as increased close monitoring of glucose management during their high-altitude endeavors.
Table 1: Environmental Effects on Diabetes, Imported from WMS
Lastly, in preparation of a high-altitude excursion, there are recommended items that should be packed for daily management of glucose, in addition to back up items to ensure athletes with diabetes aren’t left in a dangerous situation. Fortunately, the WMS was able to create a well-organized table on the recommended supplies.
Table 2: Medical Kit Preparation, Imported from WMS
Treatment of ketoacidosis or HHS:
To be properly prepared, an athlete should complete his/her own research on how changes of altitude and exercise can affect blood glucose management. This includes complete pre-trip preparation and packing. Once cleared, a diabetic athlete can finally head out on the high-altitude adventure. In case of emergency, a diabetic should be aware of the proper steps if he/she were to experience diabetic ketoacidosis (DKA), hyperosmolar hyperglycemic state (HHS), or even acute mountain sickness (AMS). Hyperglycemia is described as a blood glucose greater than 250 mg/dL and without adequate treatment can lead to either DKA or HHS. Type 1 diabetics are more likely to go into DKA, while type 2 diabetics are more inclined to present in HHS. One of the most important indicators if a person were to be in DKA are ketones in blood or urine. This is why it is very important to make sure a wilderness athlete carries ketone strips in his/her emergency medical pack. Typically, if a patient finds ketones in their urine after using a ketone strip, then he/she is educated to seek emergent medical attention. When on a wilderness adventure, this can be a difficult task to accomplish. This is why the WMS also developed a flowchart in order to manage hyperglycemia and DKA without medical support. Refer to table 3 for their flowchart.
Table 3: Algorithm for management of hyperglycemia and ketosis in the backcountry. EDD, estimated daily dose, PO, oral intake, Imported from WMS
One issue that diabetics have when dealing with high-altitude is differentiating hypoglycemia and hyperglycemia side effects from AMS. The most reliable differentiating factor is increased blood sugar readings correlating with symptoms. WMS states that either a continuous glucose monitor or increased finger sticks for a higher frequency of blood sugar readings is important to determine if a person with diabetes is experiencing blood sugar complications of AMS. When discussing treatment of AMS in diabetics, the same methods are used as are recommended for a non-diabetic individual: Acetazolamide and dexamethasone in initial medical management. In regard to diabetes, it is important to discuss the potential additional side effects. Acetazolamide can worsen dehydration and acidosis if used at the wrong time. Dexamethasone is known to worsen blood glucose control. Both are still useful in acute mountain sickness but must be weighed against causing worsened complications.
Conclusion:
When participating in a wilderness adventure, individuals with diabetes will be prone to more medical side effects. Changes in altitude, along with the level of activity are known to affect diabetic control, so proper preparation prior to departure is required in order to ensure the health and safety of a diabetic wilderness athlete. After being cleared by a medical professional and obtaining proper information, diabetics can plan to complete a wilderness adventure similar to that of a healthy individual with no comorbidities. However, it is common for diabetics to experience hyperglycemia with high intensity activities and an increase in altitude. Therefore, diabetics (particularly type 1 diabetics), should be prepared with extra insulin to counteract elevated glucose levels. Alternatively, if a diabetic were to be at higher altitude with a longer duration of aerobic or anaerobic exercise, then he/she may be prone to hypoglycemia — lower blood sugar levels. In either case, individuals with diabetes will need to monitor blood sugar levels more closely. The WMS provides diabetics with an outline of recommended supplies that may be needed in the wilderness. The outline also suggests for diabetics to bring ketone strips, as this is the most accurate measurement to determine if a diabetic is in DKA or HHS. The ultimate goal of the WMS is to ensure the health and safety of diabetic athletes. Diabetes is a difficult disease to manage but becomes even more challenging when partaking in a wilderness adventure.
(All tables and figures imported from WMS)
References:
de Mol P, de Vries ST, de Koning EJ, Gans RO, Tack CJ, Bilo HJ. Increased insulin requirements during exercise at very high altitude in type 1 diabetes. Diabetes Care. 2011;34(3):591-595. doi:10.2337/dc10-2015
VanBaak KD, Nally LM, Finigan RT, et al. Wilderness Medical Society Clinical Practice Guidelines for Diabetes Management. Wilderness Environ Med. 2019;30(4S):S121-S140. doi:10.1016/j.wem.2019.10.003
Jonathan Edmunds is a second-year physician assistant student at RRCC PA Program in Arvada Colorado. Jonathan is a Colorado native, born and raised in Littleton, CO. He attended Colorado State University in Fort Collins, CO where he competed in Track and Field as a long jump/triple jumper, as well as earned his bachelor’s Biological Sciences. During his junior year in college, he was diagnosed with Type 1 diabetes and quickly became an advocate the support of diabetes education. After graduating in 2015, he focused his medical career aspirations on becoming a PA. He volunteered at Banner Fort Collins Medical Center and work at Bonfils Blood Center as a phlebotomist for 2 years before applying to PA school. In his free time, he enjoys coaching track and field at Littleton high school his alma mater, doing all things outdoors, and cozying up to his three “Irish” chihuahuas at home.
Perhaps you have experienced the snow packed, ice-covered sidewalks of Summit County, Colorado. You crunched your way along annoyed, but never thought much of it after. Imagine you approach the same treacherous sidewalk, only this time you are in a wheelchair. For those living with disabilities relying on mobility and other assistive devices, such a sidewalk is an impassable obstacle, and the unfortunate daily reality for much of the year in our winter-laden towns. No simple walks to morning coffee. No easy access to run errands or get to your doctor’s appointment. Nothing is a simple task.
Meet Leo Santos, a 26-year-old Summit County local who understands such challenges better than most. Since the age of three, Leo was brought up in our own Colorado mountains and knows the life of long winters in a rural town, but at the young and healthy age of sixteen his perspective would change. What started as joint swelling and pain progressed into the debilitating chronic condition known as gout. The disease became so severe it limited Leo’s physical mobility and forced him into a wheelchair. In 2018 Leo developed osteomyelitis, an infection deep in the bones of his left foot. The infection required immediate life-saving treatment, transfer by ambulance to Denver, and intensive care. Leo returned home to Summit as an amputee.
This was a dark time for Leo, now further limited in mobility and relying on in-home nursing care for recovery, an unusual fate for a young man. It was during this recovery Leo’s nurses, provided through Bristlecone Health Services, suggested he reach out to the NorthWest Colorado Center for Independence. After constant prodding from his caregivers, Leo reluctantly agreed to explore the program. The rest was life-changing.
The NorthWest Colorado Center for Independence (NWCCI) is a non-profit organization dedicated to helping individuals with any disability get their independence back. NWCCI serves youth, adults, and seniors alike, connecting them (consumers) with resources including independent living services, housing, transportation, assistive technology, and employment opportunities. Their only requirement? Be a willing participant and have at least one goal toward living independently. The organization has their headquarters in Steamboat Springs, CO, but serves individuals across North West Colorado, including chapters in Craig, Grand County, and Summit County. NWCCI is supported by grants and donations and offers services free of charge to their consumers.
Leo recalls the anger and frustration of his new reality post-amputation and his own reluctance to do anything. Leo remembers the day he decided to make a change, stating, “I can sit here and be miserable or get back out there and do what I love”. He instantly made his first goal: to physically leave his house. It was here he met Carlos Santos, a staff member of NWCCI and now dear friend, who helped Leo accomplish his first goal. Leo fondly recalls his first outing with NWCCI, a group trip to go painting in Breckenridge, and then to Downstairs at Eric’s for pizza and games. Goals were met, a community was found, and life-long friends were made that day.
Leo Santos and The Ebert Family Clinic Montañeros on their ascent up Arapahoe Basin ski area to over 12,000′
Despite Leo’s improved outlook with his newfound community, he was not spared of continued challenges. In Fall of 2019 Leo became a double amputee. In addition to another devastating change, he continues to live with intense chronic pain related to gout. He describes his journey away from addictive pain medication and commitment to being free. Leo confessed he does not consider himself to be strong or tough but has learned to deal with it in his own way. Leo hopes to receive his first prosthetic leg this March.
Many challenges face those living with disabilities in the High Country. Anyone needing a prosthesis or wheelchair must travel to Denver for fittings and supplies. Transportation which accommodates disabilities is an ongoing challenge, both with lack of properly adapted vehicles and volunteers to drive them. As the COVID-19 vaccine becomes available to this population and the seniors NWCCI serves, transportation to receive the vaccine is a major concern, as well as getting members on the waiting list. NWCCI hopes to reduce this obstacle. Other challenges outside of mobility include isolation among the disabled and elderly, long winters, and lack of general resources. Additionally, Leo brings to light the continued need for American Disabilities Act (ADA)-compliant housing, a regional challenge even for those without disabilities.
After almost three years as a consumer of NWCCI, Leo now proudly serves as the NWCCI Summit County Youth Coordinator. Leo hopes to inspire and connect with youth by sharing his own story and continued struggles. This year Leo will help plan and attend the Youth Leadership Forum, an annual conference which draws in youth from all over the state and provides education about ADA rights, being a self-advocate, and ultimately providing an opportunity for youth to transition independent from their parents. The conference will be held virtually this year. Leo gives a shout out to the other local programs supporting the disabled community in getting out on the mountain, such as the Keystone Adaptive Center (KAC), and Breckenridge Outdoor Education Center (BOEC).
“NWCCI staff and consumers are here to support anyone who is ready. We are willing to help and teach you if you are willing to help yourself,” he says. Leo stands firmly by this statement, saying they are not intrusive, but rather they are here with a supportive like-minded community with resources for independence when you are ready.
An accessible swing at a new playground in Frisco, Colorado’s Walter Byron Park.
Even the smallest of goals accomplished can change a life Leo explains,
“You don’t have to go anywhere; you can just go outside and sit in the sun. The better you feel the more you will want to do.”
Programs of NWCCI are spread much by word of mouth through consumers. More information can be found on their website at https://www.nwcci.org/. The organization is open to new consumers, volunteers, and donations. Opportunities for connection and support are available to all individuals including virtual gatherings. NWCCI is committed to supporting individuals living in their own homes and the communities they love, regardless of age or disability.
To learn more about the United States’ largest minority group and the world of disabilities, view the inspiring true Netflix documentary Crip Camp: A Disability Revolution. Produced by Barack and Michelle Obama’s production company in 2020, Higher Ground Productions, Crip Camp tells the true story of a group of summer campers in the early 1970’s and their fight for recognition and civil rights. View the trailer here.
Ruth Nash is a second-year family nurse practitioner student at Colorado University, Anschutz Medical Campus. Born and raised in Cleveland, OH, Ruth attended Hocking College earning her Licensed Practical Nurse Diploma and licensure, followed by an Associates in Applied Science and Registered Nurse licensure, then completing a Bachelor of Science in Nursing from Ohio University. From the New England Appalachians, to the Midwest, and now here in the Colorado Rockies; Ruth has served in long-term care, bariatric surgery, pediatrics, special-needs adult programs, youth summer camps, and in the emergency room. Ruth lives full time in Keystone, CO and currently works in the emergency department at St. Anthony Summit Medical Center. Outside of the ER and pursuing an advanced practice license, Ruth enjoys mountain biking, hiking, skiing, rafting, art, and teaching barre fitness at a local dance studio.
This past weekend, volunteers from Ebert Family Clinic in Frisco teamed up with the Northwest Colorado Center for Independence for No Barriers, a non-profit program that, among other impactful things, works to empower people with disabilities and bring communities face-to-face with what it means to be accessible.
This particular program, called “What’s Your Everest?“, takes place every year at various outdoor venues, connecting people with all sorts of disabilities with their ropes teams who assist them in ascending literal mountains. This year, held at Arapahoe Basin on the Continental Divide, participants navigated narrow, single-track trails over large rocks, through forest, up increasingly steep inclines to reach a summit well over 12,000′ (3657 m).
Volunteers and organizations across the state contributed to this weekend’s success, including STARS, Steamboat Adaptive Recreational Sports, providing a fleet of adaptive equipment to facilitate the ascent.
Some of the adaptive equipment provided at the No Barriers hike at Arapahoe Basin: we saw people on all kinds of apparatuses from hiking poles to one-wheelers to three-wheelers equipped with every kind of pedaling, wheeling, steering and braking device!
I imagine most people associate accessibility with wheelchair access in a restaurant, braille menus, audio signaling at crosswalks, ASL interpreters … this is just the tip of the iceberg. I promise you have never seen gear like adaptive equipment, and even if you have, you haven’t seen all of it.
How do you navigate a wheelchair up a mountain when it’s wider than the trail?
How do you operate or steer a wheelchair if you cannot grip the wheels or handles?
How do you navigate a trail without sight?
One of a fleet of adaptive cycles used for our No Barriers ascent and descent of Arapahoe Basin ski area. This particular apparatus allows the user to steer using pressure against a chest pad while “pedaling” with their hands. You can’t brake while using your hands to pedal!
None of this is easy, and even the current adaptive equipment has inherent flaws. It’s important to recognize that each person’s disability is unique, and can’t always be compensated by the same equipment produced for the next person.
Our ropes team with Leo in a wheelchair engineered for off-road ascents. Handles in the back for pushing, a handle inside either wheel for moving the wheels, steering and braking — but what if your disability prevents you from gripping the handles??
How do you start thinking about accessibility?
Accessibility is about cost. Adaptive equipment is expensive. Custom-making a recumbent bicycle that allows you to pedal without the use of your legs or feet is thousands of dollars, and people who need this equipment to partake in activities everyone without a disability enjoys should not have to pay more for being disabled.
Accessibility is about comfort. After volunteering at this year’s annual Colorado Youth Leadership Forum, where young adults with disabilities are empowered and educated about advocating for themselves and living independently, I realized you cannot expect people to stay focused and engaged in your programming if the room is too hot or the provided meal is unfulfilling. If someone without a disability is distracted by the temperature, you can be sure the attention of someone with autism is long-gone.
Accessibility is about time. Whatever expectations you apply to the amount of time someone needs to put clothes on, eat, use the bathroom, speak a sentence – forget all about it. People with disabilities often need more time. If someone needs more time in the bathroom or walking/wheeling to a destination, adjust your expectations and wait. Your impatience and intolerance is not improving access.
Two teams taking a break half-way up to Black Mountain Lodge at Arapahoe Basin ski area, after navigating some of the narrowest portions of the trail.
Accessibility is about language. Learn sign language. It is just as much a part of our culture as spoken English and Spanish. People with hearing impairments often learn to read lips because they are taught that their hearing counterparts can’t be bothered to learn a form of communication other than one spoken language. And this isn’t just about being deaf. Having a disability sometimes means you have a speech impediment, or that your brain doesn’t organize thought and speech the same way others do. Communicating effectively takes all forms for all disabilities: physical, mental and emotional.
Northwest Colorado Center for Independent Living (NWCCI) Independent Living Coordinator Carlos Santos hauling down the mountain at Arapahoe Basin ski area on an adaptive cycle after making his ascent to over 12,000′ on foot with hiking poles.
Accessibility is about attitude. Sometimes, people with certain disabilities can be very loud and blunt. Sometimes, they can walk, but with a limp. Sometimes, they speak very slowly. This does not mean they are rude, drunk, can’t think for themselves or can’t express their own opinions. Accommodating these situations means being prepared to shift your expectations and perspective.
I’ve been scolded by people sitting behind me at an opera for whispering translations to my blind companion next to me, before headsets with translations were provided. I’ve helped my friend into an outdoor trash elevator to get from the street level to a downstairs bar. And there was still a step onto the elevator platform. I’ve witnessed someone being thrown out of a bar for being “too intoxicated”, when in reality, he was just paraplegic and walked with a limp. And how is someone in a wheelchair supposed to use a port-a-potty at an outdoor music festival?
Is this the best we can do?
Our indoor establishments are barely held to any minimum standard of accessibility. Why are we doing so poorly, and why does access stop when it comes to the outdoors?
Ebert Family Clinic’s team, Medicina Para Montañeros, ascending the final 100 meters at Arapahoe Basin.
I continue to learn more and more about what it means for any particular event, establishment, activity or location to be truly accessible and inclusive, and it is important to me that my friends and family with disabilities are able to partake in the same experiences that I enjoy. I’ve realized that recommending a place that is “accessible” depends a lot on the disabilities present. Determining whether or not someone in a wheelchair can navigate a trail depends on what kind of wheelchair they are in as well as the grade and width of the trail.
12,500′ after hours of hiking, pushing, pulling, wheeling, carrying our way up to the top of Arapahoe Basin, discovering that ‘what is inside us is truly stronger than what is in our way’.
Accessibility is about problem-solving. It is up to all of us as a community to find solutions that enable our friends and family with disabilities to interact as freely with our environment as those of us without disabilities, both indoor and out. I encourage anyone and everyone to start with a simple visual assessment: take a look around you, next time you are on a hike, in a brewery, by the lake, at the farmer’s market, at your favorite coffee shop and ask yourself if your disabled counterparts would be able to join you. Start there.
Roberto Santos on an epic powder day at the opening of The Beavers lift at Arapahoe Basin ski area.
Roberto Santos is from the remote island of Saipan, in the Commonwealth of the Northern Mariana Islands. He has since lived in Japan and the Hawaiian Islands, and has made Colorado his current home, where he is a web developer, musician, avid outdoorsman and prolific reader. When he is not developing applications and graphics, you can find him performing with the Denver Philharmonic Orchestra, snowboarding Vail or Keystone, soaking in hot springs, or reading non-fiction at a brewery.
