Monday, September 16, 2019

A Memorable Beginning


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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The following post is from a recent Stroke Connection article.
Stroke.org

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A Memorable Beginning




Survivor Deborah Nealon hikes Paintbrush Divide in the Grand Teton range.
Survivor Deborah Nealon hikes Paintbrush Divide in the Grand Teton range.
This slice of my life has been offered for public consumption before; only now I serve it as an appetizer, not the main course.
At 5:30, my morning began as normal. It was the start of Memorial Day weekend 2005. It was as normal as any other morning except I noticed my right hand was not helping my left to shampoo my hair. It felt weak and tingly. As I dressed, my right hand did not participate again. Although my hand appeared fine, it was acting as if it were an inflated latex glove, exaggerated and numb.





A couple of hours later, I sat in a diner wanting breakfast when another unusual event occurred. A waitress approached the table to take my order, and I could not express that I wanted bacon alongside my scrambled eggs unless I used the word “with” because I was unable to say the word “and.” “Wow, I need breakfast,” I thought. I ate as a lefty because the fork anchored my right hand to the table. After eating, I thought I was ready to get on with the day, so I paid the tab, left the diner and headed for my car. But I only made it to the curb.
I caught a glimpse of someone’s watch as I arrived at the emergency room. It was almost 1:00 p.m. My recollection of my transport to the hospital is a blur. When I was in the emergency room, I got progressively worse and started to lose more and more of my abilities. I became paralyzed on my right side. I was frightened, not knowing what to expect.
Once the hospital paperwork was processed, the staff assessed me, disrobed me and prepared me for an MRI. I couldn’t even sign my name, and while I may not have been able to ambulate or speak well, I could hear just fine. The MRI machine was loud and frightening. When the noise stopped, a nurse took me back to my curtained cubicle on a gurney via a bright, busy hallway. I lay there acutely aware of every sound, waiting in a sub-comfortable temperature for the results.
As time ticked by, I grew anxious and bored. Then I realized I was learning a lot about my surroundings without physical exploration. The gruff voice coming from behind the curtain on the right was that of a woman. The smell of cigarettes permeated that side of the room, and I pictured a 40-plus-year smoker as she requested some water. There was snoring behind the left-side curtain, so I thought that must be a man.
Just as I began to relax, a physician yanked open my cubicle curtain to inform me that I had had a stroke. What? Did he see my D.O.B.? I was only 35 years old. My knowledge of stroke was very limited. I think the common perception is that stroke happens to elderly people — at least that was my perception and I’m even in health care.
The doctor went on to explain what caused my stroke — hyperthyroidism caused by Graves’ disease. This condition made my heart beat fast and irregular which allowed a clot to form which blocked an artery restricting the oxygen to my brain. I have since learned about Graves’ disease and how to control it. Graves’ disease can go dormant. That’s where I am now — off medication and aware of the signs and symptoms of Graves’ disease. (See sidebar About Graves’ Disease.) I do blood work periodically just to make sure it’s in check.
After I was admitted to the hospital, I would learn that it is not shocking for a person to have a stroke at 35. Even fetuses still in the womb have been known to have strokes. So, strokes occurring in young people are not unique. What is unique is the way a stroke affects each person. Some people barely notice that they’ve had a stroke, while others are devastated.
The first night in the hospital, I felt alone after everyone went home. I remember being afraid to go to sleep because I wasn’t sure if I would wake up or what other deficits I would have when I woke up the next morning.





My stroke made the right side of my body inept and rendered me verbally useless. Since I’m right-handed, my attempts at communication were exhausting and ended in failure. Any letters I tried to scribe with my left hand were not legible. The seal-like sounds that came from my mouth were indecipherable, too. Meanwhile, my brain was secretly hard at work reorganizing to restore my function.
Eleanor Roosevelt said, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”
Six days after my stroke, I was released from the hospital. I had recovered quickly and was able to walk, talk and write. I felt like a butterfly freshly emerged from a cocoon. With eternal gratitude, I immediately began to create a whole new life.
Deborah in her home officeI was back at work in health care in less than two weeks, because when you have financial need, you can’t wait to go back to work. I had to be picked up and dropped off before being cleared to drive six weeks later. They said my recovery was most likely attributable to my age and being in good health.
A year after my stroke, I taught my youngest daughter how to drive. I watched with pride as she became a college freshman. It was traumatic for her to witness my stroke, but that’s what gives you motivation to keep going. You want to give your children comfort and security and let them know they can depend on you.
I took up running, which helped me with my gait. It was awkward at first, but I would go on to do three marathons. The first one was in 2009, four years after my stroke. I have also learned how to mountain bike and even had a brief opportunity to showcase my skills on a local television show about women taking up mountain biking. Surprisingly, I discovered I love mountaineering despite being afraid of heights before. In the past several years, I have climbed many mountains.
I went on to complete a graduate degree in health administration. At the time of my stroke, my specialty was podiatry. Today, it is vascular. So now I’m closer to patients who have had strokes.
So much has happened since my stroke more than a decade ago that has helped me put it into perspective. In the beginning when I would introduce myself, it was almost always, “Hi, I’m Deborah Nealon and I had a stroke.” because it was so much at the forefront of my mind. But as time passed, my stroke became a small part of my life because I feel I have overcome most of the deficits and have also overcome the fear and emotions that go with such a traumatic event.
I now understand my stroke is what started this story, but it is the beginning portion, not the main course. It no longer defines me. However, I acknowledge that the healthy and satisfying life I’m now enjoying would not have begun without it.





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.

Tuesday, August 27, 2019

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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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.

   

Sunday, August 11, 2019

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
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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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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.
illustration of man with cane
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
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
illustration of woman sitting in chair with dog in her lap
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
illustration of senior couple holding handsSocial 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.​

Sunday, July 28, 2019

Movie Oscars Night at Stroke Camp


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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This Smilebox slide show was created last weekend 7/20/19. This is from the Rockford, Illinois Stroke Camp weekend which is one of the 30+ camps we are giving this year all over the country. You will see the many things we do during the weekend. Our theme this year is Oscar Presentation Night. Saturday night we created an Oscar event with red carpet, paparazzi, and awards. I hope you enjoy this as much as our campers did.
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Click to play this Smilebox slideshow
Create your own slideshow - Powered by Smilebox
Another digital slideshow by Smilebox






Sunday, July 21, 2019

Working on Fine Motor Skills


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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Working on Fine Motor Skills




Fine motor skills are how we use our hands and coordinate the small muscles that control our fingers. Those skills, along with other arm functions such as reaching and grasping, can be affected by stroke. The stroke’s severity determines the extent of this weakness.
A stroke may affect many upper extremity functions:
- motor control
- one’s perception of where their body is in space (known as proprioception)
- decreased sensation
- shoulder weakness
- weakness in the wrist and hand

 

Leanne Suero
These can have a serious impact on a survivor’s life, particularly on how they are able to manage many essential activities of daily living (ADLs).
Something as basic as putting on a shirt shows us the importance of fine motor skills. The survivor must pick up the shirt, orient it, put his/her arms through the sleeves. They must pull it into place and manage buttons, zippers or other fasteners. All of this can be challenging with impaired fine motor skills.
To maximize independence with ADLs and mobility, survivors benefit from rehabbing these skills with an occupational therapist.
Fine motor skill therapy may be either inpatient or outpatient, depending on the severity of the stroke and where the survivor is in their recovery process. Occupational therapists (OTs) in each setting determine their plan based on the needs and goals of the survivor.
Occupational therapy usually involves at least one of these types of interventions:
  • Participating in ADLs: Things like buttoning a shirt, tying shoe laces, cutting food, opening food containers and performing toilet hygiene use fine motor skills and encourage their use in other everyday tasks.
  • Functional tasks like combing your hair, feeding yourself or brushing your teeth.
  • Therapeutic activities that are less functional, like stacking cones or threading beads on yarn. Typically, therapeutic activities help to address more specific aspects of fine motor skills deficit, like addressing specific grasps such as a lateral pincer grasp, which you use when turning a key, or a dynamic tripod grasp, which allows you to hold a pen.
  • Many fine motor skill deficits involve muscle weakness. Therapeutic exercise can help. Performing bicep curls or chest presses and using free weights to build strength and muscle are examples. This helps maintain current strength and/or create gains in strength.
  • Neuromuscular electrical stimulation involves using a device that delivers electrical impulses to nerves causing the muscles to contract. The goal is to regain movement and strength.
  • Massed practice is long sessions with a lot of repetition performing a specific task, like stacking cones, during a specific interval of time. The idea being that “practice makes perfect.”
  • Constraint-induced movement therapy: Based on the principle that movement in the affected hand or arm can be strengthened and increased by constraining the unaffected hand: a mitt on the “strong” hand, forces use of the affected hand. By focusing the use of the recovering hand or arm, constraint-induced movement therapy helps prevent “learned non-use,” which occurs when survivors prefer their unaffected hand to do things.
After rehab, it is important for survivors to keep doing things that encourage fine motor skills, like dressing and feeding, as independently as possible. Therapists also provide home exercise programs so survivors can use the skills and activities learned in therapy in their everyday routines. It is important to make every hour of the day count. These home exercise programs help maintain the gains made in therapy that enable survivors to become as independent as possible.
When fine motor skills are taking time to recover, an OT can also help find ways to compensate to encourage independence and function. It is important to find ways for a survivor to be successful in their everyday lives throughout their recovery process. There are hundreds of tools and strategies that can be used to compensate for impaired fine motor skills; here are some examples:

Universal cuff



This piece of adaptive equipment lets the survivor hold a pen, an eating utensil, a toothbrush or other objects despite a lack of strength or coordination in the hand. The universal cuff wraps around the hand just below the fingers and has an insert where the object can be placed.

Sock aid



Assists a person with only one useful hand in putting on a sock without having to reach down to their foot.

Button hook



Allows a survivor to button a shirt with only one hand.
A person’s home can also be adapted to allow more accessibility. Things as simple as changing a door knob or a handle on a cabinet can enable a survivor to open doors and lessen the need for assistance at home. Independence can be achieved in many ways, and it is our goal as occupational therapists to ensure that stroke survivors can live life to the fullest.

Sunday, July 14, 2019

When They Don't Know What They Don't Know


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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This post is from the American Stroke Association. It may be best read by holding your cell phone in landscape position, i.e. the long side of your phone facing your lap.
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When They Don't Know 


What They Don't Know

Understanding and managing the challenges of living with post-stroke anosognosia



Who among us has never experienced denial? Denial is a common, psychological coping mechanism born of an internal need to defend ourselves from being forced to face something unpleasant or unbearable. Sometimes stroke survivors appear to be in denial about some effects of their stroke. But what if their refusal to recognize a deficit isn’t denial, or any other psychological response?
Anosognosia (pronounced an-a-sog-NO-sia) refers to a person’s lack of awareness of their own motor, visual or cognitive deficits. It can happen in people with stroke, traumatic brain injury, multiple sclerosis, Parkinson’s disease, Huntington’s disease and Alzheimer’s disease. It can also occur in people with major psychiatric illness such as schizophrenia and bipolar disorder.
In stroke, this may mean a survivor is completely unaware of some effects of their stroke. They may not know they have paralysis or weakness on one side, loss of vision, memory loss, neglect — sometimes even aphasia. When it happens, the stroke causing it is usually in the right side of the brain, though we may not have a complete understanding of how often it occurs with a left-brain injury because it may be hard to detect in survivors with certain types of aphasia.

Dr. Karen Postal
To family members anosognosia typically looks like denial, as in “Mother just doesn’t want to believe she has lost her memory.” But that is not accurate says neuropsychologist Karen Postal, who teaches at Harvard Medical School and is the immediate past president of the American Academy of Clinical Neuropsychology. “Anosognosia is a neurologically based deficit,” she said. “Denial is a psychological concept. In denial, they don’t want to know. In anosognosia, the survivor can’t know that something is wrong because that part of their brain is literally not working to allow them to know that something is wrong with the rest of their brain.”
As you can imagine, this misunderstanding results in a lot of frustration for both survivors and caregivers and other family members. Survivors, convinced there is nothing wrong, resent being treated like there is; caregivers know there is something wrong and are acting to keep their survivor safe. The conflict that may arise can be quite daunting (more on that — and what to do about it — later).

Living with the Unknown Unknown

Anosognosia damages relationships. Postal shared this example: “I had a patient who was profoundly unaware that they had trouble with reasoning and memory. She took 12 pills three times a day and was solely responsible for filling a very complicated pillbox at the beginning of each week. The likelihood of her accurately putting the right pill in the right place and then remembering to take it was literally zero.
“I asked her husband about taking over the pillbox, and he said, ‘She won’t let me. I know she can’t handle it, but she won’t let me because she feels like I’m just being controlling because, of course, she can do it.’ That’s a horrible position for a caregiver to be in because you have to offer help and the help is being rejected. But not only is it rejected, your motives are being questioned. And logically so, because the person with anosognosia doesn’t know they have a problem, and yet someone is telling them they can’t do something; their natural conclusion is that something’s wrong with the caregiver. ‘Why are they treating me this way? What’s wrong with them?’”


In addition to an inability to know they have a memory problem, a survivor can have anosognosia for a visual field cut or neglect: “The survivor looks straight ahead, and he does not have awareness that he is not seeing half of his visual field. It’s just not on his radar, and he’s not aware of that.” Or a weak or paralyzed limb: “The classic example of this is a patient who is screaming in bed and hitting the nurse’s call button because there’s someone else’s dead leg in the bed with them.”
“It’s pretty unusual to have such a profound anosognosia that you would think it was someone else’s leg in bed with you,” Postal said. “Anosognosia for a thinking problem is a lot more common.”
In some cases, lack of awareness of memory problems can look like psychiatric problems. Postal gives this example: “Someone will come in, look me in the eye and say with all sincerity, ‘People are stealing from me. People are coming in to my home and taking my clothes and my handbag, and they’re doing this consistently.’ Sometimes they name a family member who is probably making all sorts of sacrifices to provide care. But because the woman does not know she has a memory problem, and things are missing, it’s a reasonable conclusion, based on faulty data, that people are stealing from her. That makes her look paranoid. But she’s not really paranoid in the sense that she has a psychotic condition. She’s coming to a logical conclusion based on faulty data.”
This graphically illustrates the caregiver’s predicament — on top of doing the often exhausting and stressful job of taking care of a disabled spouse or family member, their motivation and integrity are impugned, and their job made harder by fights and disagreements and lack of cooperation.

What Helps

Since treatment is very limited for most types of anosognosia, therapy involves family members learning strategies to cope with their situation.
Learn what it is, and what it isn’t
The first strategy is to educate family members that it is not denial and help them understand what to expect. “In the context of anosognosia that emerges after a stroke, like many post-stroke symptoms, the problem may naturally improve over time,” Postal said. “Once family members realize that lack of awareness is literally part of the thinking problem, they feel free to stop constantly trying to ‘break through the denial,’ trying to convince their loved one that they have a problem. A husband may think he needs to constantly point out his wife’s mistakes because, if only he can win the argument about whether or not she has memory problems, his spouse won’t try to drive the car. He may think it’s important every day to have that argument because if not, his wife is going to engage in activities that are dangerous. But once you know that the argument is completely ineffective, that it’s only going to upset everybody in the room and it’s never going to work, you do not have to have that argument. Getting rid of that burden is very freeing for people.”
Make peace with what is and be prepared
The second strategy is to make peace with the fact that the person one is helping will not think they need that help. “As an example, if you go to your grandmother’s house once a week to clean the bathroom because she doesn’t do it anymore, but she has no awareness her housekeeping has gone downhill, you might prepare yourself in advance that she will be bewildered about why you think you need to come and clean her bathroom. As she’s puttering around you saying, ‘This is ridiculous,’ rather than convince her that without you her bathroom has been filthy (she can’t believe you), you might prepare a deflection, ‘I just love to get in there and clean! Thanks for letting me tackle your bathroom as well!’ Being prepared for the misattributions actually helps because you do not take it as personally.”
Know it’s not you and that you’re not alone
A third strategy is helping caregivers realize that they are not alone in the experience of caring for a loved one where the relationship is suffering because the person doesn’t know they need help and does not want help. “The strain on the relationship may feel like it is because of something about you, or something about your marriage, or your relationship with your parent, but knowing it’s a universal thing helps. If you have 20 sets of caregivers of someone with anosognosia, they’re all experiencing the same thing. It’s helpful just to know, ‘Hey, it’s not me.’”
Postal suggests there are two methods for interacting with a loved one in that moment where someone doesn’t have awareness. Method one: Let the goal be to inform, not to convince. “When I have someone in my office who has profoundly impaired thinking and they can’t know it, my goal is not to convince them. My goal is to provide information. I’ll be straightforward. I’ll say, ‘You came in here because there was a concern you had a memory problem. Boy, were you guys right, you really do. Compared to the typical person, you’ve got a big memory problem.’ They may say to me, ‘Well, but… I felt like I was in kindergarten taking those tests. I haven’t taken tests in 30 years. That didn’t really measure my memory that great.’ Then I’ll say, ‘I recognize that you don’t necessarily feel that it’s the case, but that’s how the test came out. But right now, I just want to talk about two or three things.’” Method two: “You acknowledge that there’s a difference of opinion and move on. Every time it comes up, and it will come up a lot, you just keep acknowledging that there’s a difference of opinion and move on. There’s nothing about that that makes the underlying situation any better, but it can allow the caregiver to bring down the temperature of the interaction a few degrees. ‘We don’t need to agree.’”
Family members may have to take action to protect their loved one even though the person can’t know that the action is necessary. “That’s really hard. Caregivers may have to sit in the room and watch their mom take her medicine every day, even though it makes their mom feel infantilized. They may have to take the keys away, or disable the car, even though their husband can’t know it’s a logical safety issue. ‘I understand you don’t agree, but this is something we have to do for safety.’ There may be no painless way to do that.”

A Piece of Good News

There is a little good news, as relates to stroke-caused anosognosia — it may get better over time. “With a stroke, you generally get the very worst right up front, and then there is improvement over time. In large, profound strokes, you may not get a lot of improvement, but you tend to either stay the same or improve. There’s a chance that a survivor’s self-monitoring and awareness system may come back on line, particularly in the early stages, but even months and years out, you can still see improvement. Some people with anosognosia from a stroke reach a plateau where they’re unaware of the deficit and that’s it.”




Common Complications

As mentioned above, safety is often an issue related to anosognosia, especially related to medication and driving. Postal pointed out some other complications. If a survivor is unaware of a mobility issue or visual deficits, falls can be a danger.
“Someone after a stroke may not be good with complex problem solving but they don’t/can’t really recognize that. That makes them vulnerable to making financial decisions that would not be in their interest. Of course, the reasonable thing would be to have some type of system set up where they get advice and counsel, or even some kind of guardianship with their finances, so they don’t get into trouble.”
Another complication is adhering to a complex medical treatment plan. “Diabetes is a perfect example. Perhaps the survivor monitored their blood sugar for years, but after a stroke there’s a big deterioration not only of their memory but of their problem solving. The likelihood of them being able to accurately measure their blood sugar and then take the appropriate action in a timely way is really low. Unawareness of those deficits could result in serious complications from diabetes.”
Finally, a complication mentioned throughout this article — the effect on relationships. “Anosognosia affects a person’s social caregiving network, which is ultimately a threat to the person because in our country, we do not have adequate government-based insurance benefits for people who need caregiving. That means people are, in a lot of situations, entirely reliant on their network of friends and family members to care for them. It really puts them in a profoundly vulnerable spot when they can’t know they need the care, so they reject the care, and those relationships are often ruptured. Really, the ripple effect of that can be very dangerous on so many different levels to people.”