The Mark of a Volunteer

www.strokecamp.org

http://www.unitedstrokealliance.org/

United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email info@strokecamp.org to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box

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Stroke Support Group Finder Link

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For cell phones, holding in landscape position (long side toward your lap), will give the best presentation.
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Recently I had a medical issue. Well it was actually only the flu, but medical issue sounds more dramatic. Anyway, because of that medical issue, I was unable to attend the August Rockford, Illinois camp. 

Hi, I'm Cheri. I'm here to help.
How do I have to get Chuck out of trouble this time?

One of our very active volunteers, Cheri, who was not scheduled for this camp, gave up a vacation day from her job to perform my Friday through Sunday camp duties. 



I will be eternally grateful for her help.

Cheri is also the coordinator and pit boss for the camp's Thursday night Bingo volunteers. Every Thursday the Tazewell Bingo Center allows us to assist them for the night which helps us raise funds to support our nation wide camps. 

Tazewell Bingo Center gives back to the community by supporting 501(c)(3) not-for-profit charities. We are one of many charities taking advantage of this opportunity. Tazewell Bingo Center's mission is to support such nonprofits, thereby allowing charity services to remain in Central Illinois.

Cheri was assigned to a few of the same camps I was so I thought I would show some of the pictures I took of her while there. 



She also takes pictures at the camp and performa other duties such as assisting stroke survivors with crafts and other events we provide.   

One of the sponsoring hospital volunteer nurses, Kim, is here assisting Cheri with craft materials.                                                                                                                                 

The camp Cheri and I staffed in June had a really nice swimming pool and the weather was perfect for swimming. 

Many of the stroke survivors took advantage of that opportunity, and Cheri, with other volunteers, joined them to ensure their comfort and safety.
Here she is with volunteers Lori, Amanda and Georgia.


On Friday nights we always try to have a marshmallow roast outdoors, and make what are called S'mores. S'mores are Graham Crackers sandwiches with a roasted marshmallow for the meat. Very sweet and very good. If you have attended any camp or cook-out you probably know what I'm talking about. The recipe dates back to the 1920's, so, if you haven't heard of them until now, I have finally contributed something wonderful to society .   

This particular Friday night it rained so no campfire was possible, but does that stop us? No, no. We just move indoors and ignore the ole meany weather.

Ha, HA! Canned heat! Yep, we try to think of everything to keep the camp fun going. 

Michelle and Amanda will not be daunted by rainy weather either.



Would you believe that a stroke survivor, unable to function on one whole side of their body plus not able to communicate fluently, would be able to zip down a zip-line...ALONE? Well they can and they do, and you can't imagine how powerful that simple event makes them feel. Guess who assists them to make that happen? 

This is at the Illinois camp. We staff over 30 camps every year all over the U.S. and we are still growing. Whenever we see a zip-line at any of our camp grounds you can bet there will be a stroke survivor on it before the weekend is over. 

But back to Cheri. If anyone deserves an award for volunteer services it would be Cheri and it should be an award as famous as the movie's Oscar. Well there is one but guess what? 

Chuck, Can we put this down now? Chuck?
Amanda, lets put this thing down.
20 snapshots are enough.

Cheri is the one handing them out.

   

Helping Others Understand

www.strokecamp.org

http://www.unitedstrokealliance.org/

United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email info@strokecamp.org to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box

*****************************************************************

Stroke Support Group Finder Link

*****************************************************************  

www.strokecamp.org

http://www.unitedstrokealliance.org/

United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email info@strokecamp.org to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box

*****************************************************************

Stroke Support Group Finder Link

******************************************************

Helping Others Understand: 

All Strokes Are Not the Same

BY JON CASWELL

Helping Others Understand is an open-ended, intermittent series designed to support stroke survivors and family caregivers with helping friends and family better understand the nuances, complications and realistic expectations for common post-stroke conditions. If there is a specific post-stroke condition you’d like to see us address in future issues, we invite you to let us know: strokeconnection@heart.org.

Although stroke is not uncommon, it is possible for people to go through life and never know a stroke survivor. And those who do know a survivor may only know one. When it comes to stroke, knowing one is definitely not knowing all.

Stroke is an interruption of blood flow to the brain, which produces unique consequences in the bodies, brains and lives of those who survive. Every stroke and recovery journey is different — and there are many reasons why that is the case. 
They include:

• How quickly the person having a stroke gets medical attention and the quality of medical care they receive
• The type of stroke and the area and extent of the brain injury
• Stroke-caused conditions that may negatively affect recovery
• The quality and quantity of stroke rehabilitation available
• The patient’s general health: Are they otherwise in shape? Are they managing other conditions?
• Medications (and side effects)
• The kind of family, friends and community support available
• And, of course, the survivor’s own attitude and commitment to their recovery

Each of the above contain a wide range of varying possibilities. The number of potential combinations of these variables is vast. It becomes easy to see how Aunt Mary’s stroke and recovery can look completely different than neighbor Jim’s.

We talked with physiatrist Richard Zorowitz, chief medical informatics officer at MedStar National Rehabilitation Network, and professor of clinical rehabilitation medicine, Georgetown University, in Washington, D.C., about the many variables that affect stroke survivors and their recovery.

The Survivor’s Age

Age increases risk, but does it affect recovery? “Theoretically, age shouldn’t affect recovery,” Zorowitz said. “But of course, it all depends upon what survivors were doing prior to their stroke. If they were very active, they have a good shot at getting back to that. If you’re older and more debilitated, the chances of recovery are not going to be as good.”

The Area & Extent of the Injury

Perhaps more defining than age — and what makes every stroke different — is where it happens in the brain. “It is as the real estate people like to say, ‘Location, location, location,’” Zorowitz said. “Certainly, size [of the brain injury] can matter, but I think the location actually can matter even more. A small stroke in just the wrong place can be just as devastating as a much larger stroke. It’s a matter of what neural pathways are affected. You can actually have a fairly large subcortical (below the brain’s cortex) stroke and not do too badly. On the other hand, if you have a little stroke that hits one of the very critical areas where motor pathways travel, that could be very, very devastating.”

To understand more about the effects of stroke on different areas of the brain, see our ongoing series “When Stroke Affects …,” on our Stroke Connection website.

The Quality & Quantity of Rehab

Yet another way survivors can differ is in the rehab they receive — how soon, how much and how good.

How soon rehab starts after stroke makes a difference. “The rate of improvement actually occurs faster earlier on, so it’s important to get going with rehab as early as possible,” Zorowitz said. “Although, doing rehab months or even years afterwards can be very, very helpful.”

“It comes down to that old adage, ‘How do you get to Carnegie Hall? Practice, practice, practice.’”

Dr. Richard Zorowitz

The quality of therapy is not uniform. How much rehab and how good the rehab is both make a difference as well. “Rehabilitation helps the brain reorganize itself,” Zorowitz said. “Intensive rehabilitation can actually help the patient to improve functionally to a much better degree than if you don’t have it.”

Patients need to be properly matched with therapists who have the skills to give them appropriate therapy. Intensity and repetition make a big difference. “Repetition really is the key to the brain reorganizing itself,” Zorowitz said. “It comes down to that old adage, ‘How do you get to Carnegie Hall? Practice, practice, practice.’ The more survivors do and the more appropriate are the things they do in rehab, the more likely they’re going to have a better outcome.”

Co-occurring Conditions & Recurrent Stroke
Co-occurring diseases, such as diabetes, unstable hypertension, other forms of cardiovascular disease and cancer, complicate recovery for stroke survivors. According to a 2017 study, unstable hypertension can prevent transfer to rehabilitation or may stop rehabilitation as high blood pressure raises the risk of a new stroke. Coronary artery disease or heart failure can limit participation in therapies, as can asthma. Diabetes can cause mental status problems that affect participation in therapies. While co-occurring conditions can affect a survivor’s stroke treatment, those diseases also need to be treated.

“I think the major thing for patients and family members to understand is what medications are for and what are their potential side effects...”

It is important for family members to know that surviving a stroke puts the survivor at increased risk of having another stroke — nearly a quarter of the 795,000 strokes that happen each year are recurrent strokes. Zorowitz said, “I think in terms of recurrent stroke, it’s very important for survivors to make sure that their risk factors and co-occurring conditions are being treated appropriately because otherwise, it will raise their risk of having another stroke.”


Post-stroke Conditions

Beyond the physical, speech and cognitive deficits stroke leaves, survivors also differ in the conditions they experience post-stroke. For instance, it is not unusual for a survivor to experience post-stroke depression, but that is not universal. The same with pain and aphasia. “Any post-stroke condition like pain or depression or pseudobulbar affect can certainly affect the ability of patients to participate in therapy, and participation really is the key to making sure that patients can get better,” Zorowitz said. “It is very, very important that these conditions be identified and treated as soon as possible.”

Medications & Side Effects

Another variable among survivors is medications. Survivors may be discharged with a number of drugs they need to take. These can range from simple aspirin and anticoagulants like warfarin, which can put a survivor at risk of bleeding, to statins and high blood pressure meds. Survivors with diabetes may require medication for that. Pain, spasticity or depression are other post-stroke conditions that may require medication, each of which has its own side effects. “I think the major thing for patients and family members to understand is what medications are for and what are their potential side effects so that you can look out for them and be able to reverse them if needed,” Zorowitz said.

Social & Emotional Support

Social support is another element that is unique to every survivor. “Does the patient have strong caregivers and family support?” Zorowitz asked. “That can make the difference in terms of the types of rehab that the patient will get because some of the regulations require that. For inpatient rehab, for example, the patient needs to have a place to go following their rehab. If they don’t, they probably shouldn’t be going to the inpatient rehab. If a patient has a good, supportive family and a good, supportive set of caregivers, the chances of them going home — even having severe impairments — is going to be much better than a patient who has no support. Studies have shown that the better the support system for the patient, the less likely they’ll experience depression, and the more likely that they’ll be able to go home and have a better quality of life.”

Clearly, given these variables, strokes can impact individual survivors in very different ways. Two strokes in the same brain can also produce very different results.

“For example, the speech centers are typically more in the left hemisphere than the right,” Zorowitz said. “So, if you have a stroke in the lower frontal area in the left hemisphere, the chances are you may end up with speech problems, like a non-fluent Broca’s aphasia. If you have a stroke in the same area on the other side, it may end up producing left hemineglect or problems with visual perceptual deficits. Location really does make a difference.”

Stroke may be one disease, but it does not produce one outcome. Every stroke is different. The deficits it leaves are essentially unique.

The Stroke Connection team knows that it can sometimes be hard for family and friends to understand how one survivor’s stroke experience can be so different from another’s. We encourage you to share this article with the people in your life — and, for those pressed for time, we’ve created a quick-reference sheet that you can print or share via email or social media with family and friends.

Stroke is an interruption of blood flow to the brain, which produces unique consequences in the bodies, brains and lives of those who survive. Every stroke and recovery journey is different — and there are many factors that make that the case.

How quickly the person gets medical attention and the quality of medical care they receive. Different types of strokes require different treatments. Getting immediate medical attention and appropriate treatment may significantly reduce long-term effects of stroke for some.

The area and extent of the brain injury
The location of the brain injury from the stroke is one of the greatest factors in how the survivor is affected and how well they are able to do in rehab. A small stroke in an area of the brain with lots of neural pathways can be more devastating than a larger stroke. To learn more about how different areas of the brain are affected by stroke, visit the Stroke Connection website.
Stroke-caused conditions that may negatively affect recovery

Survivors may experience a variety of conditions post-stroke, including depression, pain, spasticity, fatigue or pseudobulbar affect. Any of these may affect their ability to participate fully in rehab. It is important that these conditions be identified and treated as soon as possible.

The quality and quantity of stroke rehabilitation available

All rehab is not the same. Patients should be properly matched with therapists who have the skills to treat their particular needs. The intensity and repetition of rehab make a difference. Starting rehab early typically results in more and faster improvement. Some survivors have complications or circumstances that prevent them from starting rehab early.

The survivor’s general health before the stroke

Being fit before the stroke may help with recovery in some cases. However, factors such as the area and effects of the brain injury may prevent that. On the other hand, someone who is debilitated before their stroke is likely to have a harder time with recovery. Managing other diseases (diabetes, heart disease, cancer, etc.) may complicate stroke treatment.

Medications and side effects

Survivors may have several prescribed medicines — aspirin, blood thinners, cholesterol and blood pressure medications. Pain, spasticity or depression may also require medication. Each medication has its own side effects. Some may impact the survivor’s ability to work on recovery.

The kind of family, friends and community support available

Social and family support play a big part in recovery. Do your best to understand how the stroke has affected the person you care about, and how those effects may impact their degree of recovery. Your understanding and support can go a long way to bolster one of the most important factors in recovery: The survivor’s own attitude and commitment to their recovery.

This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Stroke Association.​