Sunday, June 28, 2020

How Healthy Sleep May Prevent Strokes


While at our Lincoln stroke camp, August 2013, I met Marcia Matthies, Outreach Coordinator for the Nebraska State Stroke Association. She gave me permission to reproduce on our blog any article they have on their site.

This article is packed with information on sleep apnea, and includes many links to even more information.

The following is taken from the Nebraska State Stroke Association web site ( 

Thank you Marcia

How Healthy Sleep May Prevent Strokes
March 31, 2020

Since stroke is the fifth most common cause of death in the United States, people are eager to find ways to prevent it. Research suggests that sleep health is a major factor related to stroke risk. There is strong evidence that obstructive sleep apnea in particular significantly increases a person’s risk of having a stroke.

This page contains an overview of the many research studies on sleep health and strokes. It also contains information on how to prevent sleep issues that could potentially increase a person’s risk of having a stroke. While the link between sleep health and stroke is not perfectly understood, improving one’s sleep health is beneficial in general, and likely also beneficial in regards to stroke risk.

How Sleep Health Can Cause or Prevent Strokes

Stroke is the fifth leading cause of death in the United States. A stroke happens when a blood clot travels to the brain and blocks a blood vessel, or when a blood vessel in the brain bursts. The following are signs of stroke:

Sudden numbness or weakness, often on one side

Sudden difficulty speaking or understanding
Sudden severe headache
Sudden sight problems
Sudden dizziness or trouble walking

Because strokes can be so deadly and damaging, researchers have been studying how to prevent them for decades. They’ve found many factors that put people at risk for stroke. Some are uncontrollable, such as race, age, the presence of certain genes, and having a low birth weight. Other stroke risk factors include physical inactivity, high cholesterol, high salt intake, high alcohol intake, high blood pressure, obesity, diabetes, cigarette smoking, and more.

Researchers have found that there is a connection between sleep and strokes. The connection between obstructive sleep apnea and strokes is the most well-documented, though there is also a connection between strokes and other sleep disturbances. The following sleep issues are potentially related to strokes:
Obstructive sleep apnea
Central sleep apnea
Restless Leg Syndrome (RLS)
Periodic Limb Movements of Sleep (PLMS)
Sleep loss
Too much sleep

Source: Journal of Stroke

Can Sleep Apnea Cause Strokes?

While researchers do not confirm that there is a direct cause-and-effect relationship between sleep apnea and stroke, they do state that the disorder is an important risk factor for stroke. People who have sleep apnea should take their stroke risk as seriously as those who have high blood pressure or diabetes, or who smoke cigarettes. There are several ways obstructive sleep apnea impacts the body that might explain why it increases stroke risk:
Increased sympathetic nervous system activity
Increased inflammation
Reduced insulin sensitivity
Decreased ability to break down fats
Other cardiovascular and metabolic dysfunction

Researchers recommend that stroke patients undergo a polysomnography, or sleep study, to test for obstructive sleep apnea. Many stroke patients end up having another stroke. Treating obstructive sleep apnea through the use of a CPAP machine may reduce the recurrence of stroke.

A connection between central sleep apnea and strokes has not been confirmed, but central sleep apnea is clearly connected to cardiovascular disease. Cardiovascular problems are closely associated with stroke, so it could be that a clearer link between central sleep apnea and strokes will be found in the future. Anything that negatively impacts the cardiovascular system could potentially increase stroke risk.

One study on obstructive sleep apnea noted that disturbed sleep increases the chance of obesity both directly and by leading to increased food intake and decreased physical activity. Obesity increases the chance of developing obstructive sleep apnea, which along with other factors, increases stroke risk. In this model, disturbed sleep does play a role early on in the path to stroke.

Source: Sleep Medicine and Disorders

Other Sleep Issues and Stroke

Sleep apnea isn’t the only sleep-related issue that increases a person’s chance of stroke. One study showed that non-apnea sleep disorders (NSD) increased stroke risk, particularly in men and the elderly. Non-apnea sleep disorders refers to any sleep disturbance that can’t be attributed to sleep apnea, such as insomnia, sleep disturbance, hypersomnia (too much sleep), disruptions of the 24-hour sleep/wake cycle, sleep-related movement disorders, and any other sleep problems.

Sleep duration is also related to stroke. One study found that both people who sleep less than five hours or over nine hours per night are at an increased risk of dying from stroke or heart attack. This result held true regardless of age, sex, race, smoking status, and body mass index (BMI). While the reason for abnormal sleep duration wasn’t studied, it’s likely that some of the people not obtaining enough sleep have insomnia.

Another study found that people who slept over ten hours per night were more likely to die from cardiovascular problems, including stroke. This could be due to poorer health in those sleeping for longer durations, however.

Studies suggest that movement disorders such as Periodic Limb Movements of Sleep (PLMs) and Restless Leg Syndrome (RLS) are also potentially related to stroke incidence. One study found that more PLMs are associated with White Matter Hyperintensities (WMHs), a blood vessel state that can precede stroke and other cardiovascular issues.

How to Lower the Risk for Stroke With Healthier Sleep

Research demonstrates a connection between sleep issues and strokes. There is strong evidence that having obstructive sleep apnea puts a person at a higher risk for stroke. There is also a clear correlation between sleep duration and stroke incidence, with people who sleep both too little and too much being at greater risk for stroke.

The relationships between stroke and other sleep problems aren’t as certain, though it appears that movement disorders such as Periodic Limb Movements of Sleep (PLMs) could put people at a greater risk of stroke.

Given all of the research on stroke and sleep, people wanting to lower their risk for stroke might consider improving their sleep quality. Anyone suspecting they have a sleep disorder of any kind should consider seeing a sleep specialist and possibly undergo a polysomnography, or sleep study.

Sleep studies and other testing can help doctors determine if a person would benefit from sleep medications or other sleep-related treatments.

Preventing and Treating Sleep Apnea

Sleep apnea is a disorder in which the sleeper has trouble breathing throughout the night. It increases a person’s risk of stroke and is often accompanied by snoring. Here are evidence-based methods for preventing obstructive sleep apnea:
Weight loss in people with obesity
Avoiding the back (supine) sleeping position
Cessation of cigarette smoking

Doctors generally treat sleep apnea by instructing patients to use a CPAP machine, which blows air into the nose and mouth throughout the night. Researchers suspect that CPAP machine use could potentially prevent Transient Ischemic Attacks (TIAs), which are essentially mini-strokes. Their research was preliminary, however, and they recommend larger, controlled studies to determine how well CPAP machines prevent TIAs.

A recent study reported that CPAP machines can reduce the recurrence of stroke and death in patients who have already had a stroke. Other studies show that CPAP machine use decreases blood pressure. This effect is even seen in patients who have high blood pressure that is resistant to treatment.

Since high blood pressure is a risk factor for stroke, CPAP machine use could potentially reduce stroke risk by lowering blood pressure, even in people who have never had a stroke before.

Sleeping for a Healthy Duration

What is considered a healthy amount of sleep depends on a person’s age. People who consistently have trouble sleeping within the healthy range for their age might consider seeing a sleep specialist and undergoing a sleep study. Healthy sleep durations for each age group are as follows:
Newborns: 14 – 17 hours
Infants: 12 – 15 hours
Toddlers: 11 – 14 hours
Preschoolers: 10 – 13 hours
School-Aged Children: 9 – 11 hours
Teenagers: 8 – 10 hours
Adults: 7 – 9 hours
Older Adults: 7 – 8 hours

Sleeping too much or too little is associated with an increased incidence of stroke. There are many different reasons a person might sleep too much or too little, and actions to improve sleep duration will vary depending on the individual. If there is an underlying physical illness or mood disorder affecting a person’s sleep, treating that is important.

If not, there are other actions people can take to help them sleep an ideal amount, such as:
Block out unwanted sound using earplugs or a white noise machine
Avoid drinking excess amounts of alcohol, particularly before bed
Avoid caffeine and other stimulants, particularly before bed
Go to bed and wake up at the same time every day to create a healthy circadian rhythm
Block out light using a sleep mask or blackout curtains
Adhere to a bedtime routine

Preventing and Treating Periodic Limb Movement Disorder
Research shows that Periodic Limb Movement Disorder (PLMD) could contribute to stroke risk. PLMD often overlaps with restless legs syndrome (RLS), narcolepsy, and sleep apnea. The following are ways to prevent and treat PLMD:
Test for other sleep disorders and treat them as necessary
Check medications’ side effects as limb movements can be a result of medications
Test for and treat any other underlying health issues that often accompany PLMD, such as anemia and diabetes
Exercise regularly

Final Thoughts

Sleep issues are one of the many risk factors for stroke, alongside other factors such as obesity, diabetes, cigarette smoking, high cholesterol, high blood pressure, high alcohol intake, high salt intake, physical inactivity, and more. Preventing strokes in individuals and the larger population likely requires a multipronged approach. One strategy for preventing stroke is improving sleep health.

Obstructive sleep apnea is the sleep disorder that has been studied the most in terms of its relationship to stroke. People who have obstructive sleep apnea are at a much higher risk for stroke than people who do not have the sleep disorder.

Central sleep apnea might also contribute to stroke risk since it increases cardiovascular problems. As of now, however, the link between central sleep apnea and stroke risk is not as clearly defined as the link between obstructive sleep apnea and stroke risk.

Other sleep issues beyond apnea appear to also affect a person’s stroke risk. These issues include an abnormal sleep duration, whether that is too much or too little sleep each night, and sleep movement disorders.

Although researchers cannot guarantee that improving sleep will prevent stroke, it is a healthy action worth taking. Early research suggests that CPAP use can reduce stroke risk in people with sleep apnea.

As more sleep-and-stroke-related research is conducted, more connections will likely be found. Pursuing healthy sleep is a worthwhile endeavor anyone, but may have additional benefits for people wanting to prevent stroke.

Additional Resources

If you’re interested in strokes and sleep, these articles might also be of interest to you:

Sleep-Related Breathing Disorders
Obstructive Sleep Apnea
Heart Disease and Sleep
Sleep Health
New Study Finds Sleep Apnea Treatment Can Reduce Hospital Readmissions

Sunday, June 21, 2020

Strike Out Stroke event at Dozer Park


If COVID-19 hadn't happened, June 19th would have been our local 12th annual Strike Out Stroke event at Dozer Park - Home of the Peoria Chiefs! It's always a fun night of stroke awareness, family, and baseball! 

Image may contain: 1 person, sky and outdoor

Typically our very own Chime Strokers group open the evening by playing the National Anthem and 'God Bless America' on their hand held chime instruments.

Next, we all watch the OSF Life Flight helicopter descend and land in the center of the ball diamond. 

Image may contain: sky and outdoor

Image may contain: 1 person, outdoor

The Grand Prize winner of the POSTER CONTEST for the Youth Education on Stroke program along with a parent, gets out of the helicopter to walk to the pitcher's mound to have the honor of throwing out the first pitch!

Image may contain: one or more people, baseball, sky and outdoor

Image may contain: 2 people, outdoor
Winner and Dad

Image may contain: one or more people, people playing sports, baseball, sky and outdoor

Image may contain: 1 person, outdoor

Image may contain: 3 people, people standing and outdoor
Winner and Mom

(We display the other winning posters throughout the park for people to see and learn). 

Image may contain: 3 people, people standing, beard and outdoor

Image may contain: one or more people, shoes, basketball court and outdoor

No photo description available.

Image may contain: 1 person, standing and outdoor

No photo description available.

Image may contain: outdoor

Then it's game time where we all cheer on our Chiefs and spread the message of BE-FASTER!! 

We do pitch-in-for charity to raise money for United Stroke Alliance, and people win BIG prizes by throwing tennis balls from the stands into large rings positioned around the ball field!! 

Image may contain: sky and outdoor

Image may contain: 1 person

The night usually ends with a fantastic display of fireworks!...oh how we will miss it this year. But we have these wonderful memories of last year's (2019) game to get us through until next year!

Image may contain: 2 people
Jan Jahnel on the right Pam Casper on the left

This fun filled day at the semi-pro Peoria Chiefs ball park, and the ability to save lives, would not be possible without the help of OSF Saint Francis Medical Center, Jan Jahnel, their Illinois Neurological Institute Stroke Coordinator, United Stroke Alliance and Retreat & Refresh Stroke Camp.

Sunday, June 14, 2020

What is a Stroke Camp?


MaryLee Nunley of Peoria, Illinois, a caregiver, shares what it’s like to attend stroke camp with her husband John Nunley, who was 55 at the time of his stroke. Now married 24 years, Marylee is the founder of the non-profit organization United Stroke Alliance and is currently head of its Stroke Camp division.

After her husband had a stroke, this caregiver founded a nonprofit stroke camp, which offers support and reduces stress for both 
caregivers and stroke survivors.

Saryn Chorney, an independent freelance writer for Readers Digest , interviewed Marylee for inclusion in their newsletter. What follows is that portion of the interview about Retreat & Refresh Stroke Camp.

I Went to Stroke Camp. This Is What It’s Like

Saryn Chorney
Updated: Jun. 04, 2020

What is a stroke camp?

Our first stroke camp

John and I started our first stroke camp in 2004 as a place people could go to relax and have fun. The first stroke camp location was at a church that I had attended as a youth and where my sister and her family had held camps for children with cystic fibrosis (prior to John’s stroke).

We had support from a local hospital and a local neurologist to fund the first camp. John had volunteered for a cystic fibrosis camp before we were married, so he knew what a difference it could make for people struggling with [similar] challenges. He was very glad to be entering into this new venture.

Stroke camp accommodations

Camps are held in a variety of locations, and accommodations vary from more of a camp setting all the way to hotels and retreat centers. Each unit for stroke survivors has a private room with a private bathroom. These are 3-day weekend retreats that cost $125 per person. They are located all over the country, although some have been delayed or rescheduled due to Covid-19.

The stroke camps are intentionally small in order for survivors and caregivers to enjoy an intimate setting where they really get to know each other. They are typically groups of 18-20 survivors, their caregivers (not required if the survivor is independent), and volunteers from sponsoring hospitals.

Hospitals, foundations, rehab centers, and stroke centers provide volunteers, and our non-profit organization provides a team to lead the weekend, for a total of about 60 people.
Meals, physical activities, and self-care

Meals are usually pretty nice and served buffet style; there is variety and dietary needs are met. Saturday night’s meal is always something special. Activities are adapted so everyone can participate, they include discussion, pampering, education, socialization, support, crafts, outdoor activities and more. There isn’t much “down time,” but naps are possible.

A lot of chatting takes place, crafts are available and board games abound. Some locations have boating and swimming, so there’s never time to be bored. Pampering time (pre-pandemic) includes mini-manicures, chair massage, warm paraffin hand dip, crafts, foot and leg massaging equipment, relaxation with music, sometimes yoga, and chair Tai chi.

I had been involved in church camps and another camp for disabled children [in the past], so I was pretty confident the retreat for our stroke friends would be fun and fulfilling. As my husband often says, he loves to greet campers as they arrive unsure what they’ve gotten themselves into.

John’s favorite activity is the pampering chair massages and paraffin hand dips, complete with a hand massage. He also just loves to sit quietly and visit with campers as they arrive, and see how they react to this unique event. My favorite time is the discussion circles with caregivers and our Saturday night show where we encourage dancing and offer a sort of a “date night” atmosphere for everyone.

At stroke camp, [people] dance in their wheelchair or with a cane, that doesn’t always happen elsewhere in society. Watching [the weekend] unfold is a beautiful thing. Each year we have a specific theme; 2019 was the Hollywood Red Carpet theme.

A break for stroke family caregivers

The thing that surprised me is how unique [our camp was]. Hardly anyone else was doing anything similar, so that’s how the nonprofit came to be. The Retreat & Refresh Stroke Camp has a 70% return rate, so we know that we’ve succeeded in putting together a good program.

The feedback we hear most is that people feel “normal” for a weekend. They enjoy the camaraderie and encouragement, and they often say it gives them a reason to keep working hard and trying as they see people many years post-stroke still improving.

Caregivers are happy to get a break from the day-to-day responsibilities since the group activities engage everyone. Not having to plan or cook six meals is also on the top of most caregivers’ lists.

The biggest challenge for me as a caregiver is that there is always something that needs to be done: always another task, appointment, load of laundry, prescriptions to be filled, pills to be counted out, meals to cook, nails to trim, housework to do and more.

I think the biggest relief for caregivers at the camp is that there are discussion times where caregivers meet with only caregivers and volunteers, and they are free to say whatever they want in a safe and confidential setting.

[editor note: and survivors meet with only survivors]

Sharing and having others understand and validate your journey is priceless. There are also a lot of tips that are shared and things are learned that you don’t hear at a doctor’s office. I learn something new at each and every camp I attend.

John and I married later in life and his stroke was 4.5 years into our marriage. I’d be lying if I didn’t say that much of [caring for a survivor] is like childcare, especially because of John’s aphasia, or language impairments, and cognitive deficits. I don’t treat him like a child, it’s the being in charge of someone else’s life that’s like childcare.

Much of it doesn’t show outwardly when meeting him for a short time in a social setting. The fact that he can’t read, manage any of his medical needs, medications, etc. puts me in the position of having to be in charge of a lot. We are still partners and I include him in whatever I can. We are in a good rhythm now, but it took years for us to adjust to the new way of life.

Stroke camp is for both children and adults

Strokes can happen at any age, even in children. Our youngest camper was six and the oldest 91 years old. For most camps, the average age is probably between 58-75. We do hold one camp we call our family stroke camp that includes young stroke survivors who are raising children. That age range is approximately 32-50.

They bring their children and we have time for the children to discuss and process what it’s like living with a parent struggling with the effects of stroke. It provides hope to this age group, and allows them to have fun and feel energized. [In general], we have more male survivors than female survivors at stroke camp.
That makes more female caregivers and fewer male caregivers.

[editor note: according to statistics, more women have strokes than men, yet our camp's turnout is the opposite.

I’ve learned a lot from male caregivers, though. One gender difference that I’ve noticed, though not universal, is that men just want to know how to get things done and do what needs to be done. We women seem to always second guess ourselves.

Stroke recovery is a lifetime of work

I always leave stroke camp revived, and that seems to be true for most our campers. At least that was the finding of a survey conducted by a research team, which published the results in a 2016 study in the journal Stroke.
I have learned that I’m not alone and there are people out there who understand stroke and the day-to-day challenges. Strokes take a lifetime of work as you continue recovery.

To be able to enjoy improved recovery for my husband, help others, and encourage them to keep trying has been the very best experience of my life. United Stroke Alliance grew from suggestions from our campers who wanted more people to know the signs of stroke, be aware of those signs, and help others to have a better recovery by responding quickly. That is how the program grew and the United Stroke Alliance could focus on prevention, awareness, and recovery.

—As told to Saryn Chorney

Sunday, June 7, 2020

Retreat & Refresh Stroke Camp Promo Video


The following link will take you to a video of what our camps are all about as told by a stroke survivor recovering from  aphasia:

Photos taken at the Rockford, Illinois camp. Sponsored by: