Sunday, August 11, 2019

Helping Others Understand

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 to request yours. 

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

Show Me The Booster Box

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 to request yours. 

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

Show Me The Booster Box
Helping Others Understand: 

All Strokes Are Not the Same

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:
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

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 to request yours. 

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

Show Me The Booster Box
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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Another digital slideshow by Smilebox

Sunday, July 21, 2019

Working on Fine Motor Skills

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 to request yours. 

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

Show Me The Booster Box

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

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 to request yours. 

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

Show Me The Booster Box
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.

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.”

Friday, July 5, 2019

True Love Always Assumes the Best!

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 to request yours. 

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

Show Me The Booster Box
I'm back from vacation so our blog is back on its weekly schedule. 
This week's blog is submitted by Phil Bell, retired pastor, University Baptist Church. He is a stroke survivor, and occasionally writes an article for the local newspaper. He permits us to post them, also. I apologize for the timing of this. It would have been a great June article, but I was traveling through South Dakota and Wyoming at the time. 
True Love Always Assumes the Best!

Here we are in June. Not only is it both the unofficial and official first month of summer, but also the month most chosen by couples for their wedding. In the case of Christian church weddings, probably the most used passage in Scripture is 1st Corinthians chapter 13, referred to as the love chapter. We all have no doubt heard or read it at least once, if not many times. I am not going to include all of it, but I encourage you to read it all for yourself; especially if you’re married or in a serious relationship. I am going to include part of it, the part I want to address. In my Bible this chapter is entitled “The Excellence of Love.” Before I begin, I’d like to remind us that God is love, not the resemblance of love or having the most love, but very love itself. Now, this chapter begins by telling us that even if we are the most eloquent speaker in history and /or the smartest person who ever lived, and / or are the most generous person in the history of the human race, if we do not have love, we might as well not have existed. Paul, the author, goes on to list a picture of what real love is. Starting with verse 4, Paul writes, “Love is patient, love is kind and is not jealous; love does not brag and is no arrogant, does not act unbecomingly; it does not seek its own, is not provoked, does not take into an account a wrong suffered, does not rejoice in unrighteousness, but rejoices with the truth, bears all things, believes all things, hopes all things.” I think we are pretty sure of what Paul is speaking of in his description of love, even if we aren’t always a picture of it, unless, possibly when he says, “Believes all things.” He is not saying to be gullible, but that, rather, love, given the possibility of two different ways to interpret the actions of a person, will always believe the best interpretation of that action. For instance, after my stroke I took physical therapy, weekly until about two months ago. My wife, Nancy continues to assist me, as she has since I returned home, with daily exercises. She is every bit as tough and demanding as my physical therapists were! I could interpret that as her doing so out of aggravation or out of wanting me to make a full recovery. My love for her requires me to assume the latter and I know it for sure! Another example is when she transfers me and I don’t stand very well at all, she could believe that I didn’t try very hard, am lazy, did it on purpose, or simply, tried my best and didn’t execute it well. Nancy’s love for me causes her to pick the last option, at least, most of the time! Actually, sometimes she accuses me of being lazy, which, of course, I vigorously deny! The truth be known, however, I can be a bit lazy occasionally, but please don’t tell Nancy I wrote that if you see her! My suggestion to you is to follow what Paul has written in the thirteenth chapter of his first letter to the church at Corinth! You will be on your way to making that relationship with your significant other a long one and making him or her very contented. God made us for relationship and His love in us demands we believe the best of those we love!

Phil Bell, retired pastor, University Baptist Church

Monday, June 24, 2019

The blog editor will be on vacation for two weeks.

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 to request yours. 

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

Show Me The Booster Box
The blog editor will be on vacation for two weeks. Please check back after July 17th. Take this time to look back in the archives for articles you may have missed. The blog was started in December of 2011 and those past articles are still relevant today. Thank you for being a faithful reader. 

Sunday, June 16, 2019

Part 2 - Personality Changes After Stroke

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 to request yours. 

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

Show Me The Booster Box
This week's article from is a continuation of last week's. 
Something's Different: Personality Changes After Stroke


Salinas identifies depression as the most common personality change after stroke, affecting up to one-third of survivors at some point in their recovery. Its effects can also run the gamut from flat to upset, from sad to angry. “So, you do get moves in both directions, either more emotion or less, but it’s usually one or the other,” Borson said.
Postal distinguishes between two types of depression. Reactive depression develops in response to the many losses that result from a stroke. “There’s also physiological depression where the world just seems less vibrant and you perceive things in a more negative manner,” Postal said. “It is hard to perceive and experience pleasure.”
Then there are some changes from stroke that, to the outside observer, look like depression but are something else. Pseudobulbar affect (PBA) is one example (more about this below); apathy is another, which she explains this way: “The frontal lobe is responsible for planning and initiating activities, and in some people after stroke, … (the frontal lobe) is not planning or initiating things,” Postal said. “Someone with a stroke might be able to articulate a to-do list but they can’t begin it. They’ll just sit in a holding state. To family members, it looks like Mom’s depressed because she doesn’t engage in any activity. Sometimes that is true with depression, but other times when we really get down to it, she’s not feeling sad or worthless or helpless. She’s just not able to initiate activity. So, there’s a whole array of layered symptoms and reactions and changes in emotional expression and perception that can all be present at once, creating that depressive picture.”
Depression also affects motivation, which impacts all areas of recovery and is why all three doctors emphasized that it was important to get it assessed and treated early — usually with a combination of medication and psychotherapy. And being around family, friends and others through support groups also helps.

Pseudobulbar Affect & Emotional Intensity

Stroke also may cause pseudobulbar affect (PBA), which is characterized by demonstrating intense and inappropriate emotions — laughing at a funeral; crying at a joke. “Survivors may seemingly have a very strong emotional display or response, but they are not actually feeling it that intensely,” Borson said. This is also called emotional lability.
The episodes of laughing or crying are generally brief, seconds to a few minutes. “In pseudobulbar affect, there’s a disruption in how the frontal (motor and sensory) regions, temporal cortex, brain stem and the cerebellum are working together” Salinas said. It may look like depression and is often treated with antidepressants, though not very successfully. “The good news is there is a newer FDA-approved medication for pseudobulbar affect called Nuedexta®.”
There are other survivors who, unlike those with PBA, feel their emotions intensely. This is generally connected to a lesion in the frontal cortex, which regulates emotions. How severe the injury is, and whether other parts of the brain can gradually start to take over some of it, determines how persistent it is, Borson said.

Lashing Out

Occasionally we hear from family members who report survivors who lash out. Typically this takes the form of verbal abuse only, says psychologist Barry Jacobs, Psy.D., director of behavioral sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, Pa., and author of The Emotional Survival Guide for Caregivers.
Borson indicated that this is often a depressive reaction because they are upset and frustrated at their situation. “People’s ability to do regular activities like dressing themselves or driving may be greatly diminished. For many people, they react to that with anger, as well as depression,” he said.
For most survivors, this is transitional and lessens as they adjust to their new circumstances, he said. As they get better and function on a higher level, they feel better about themselves and the future. “There are a small number of survivors where, because of where the stroke occurred, there’s a real release of aggressive behavior,” he said.
Strokes can lead to depression and impulsivity both of which can contribute to lashing out. Pre-stroke predispositions, like a short temper, can also play a part, said Salinas.

One unfortunate and painful aspect of this behavior is that it is very often directed at caregivers, particularly if there is a frontal lobe injury, which is associated with loss of empathy and impulse control. Survivors who are frustrated at their losses and clinically depressed may take those feelings out on those closest to them.
“Patients who are depressed sometimes have a tendency to take their frustrations out on others, especially those whom they trust the most and are closest to,” Jacobs said. “Survivors who have some frontal lobe involvement have less capacity for inhibiting their impulses than the rest of us do. Depressed, impulsive survivors are the ones most likely to verbally lash out.”
He urges medical evaluation and intervention from a neurologist, psychiatrist or neuropsychiatrist to try to curb this behavior with medication, particularly those that help people gain control over their impulses as well as antidepressants.
Jacobs emphasizes that medical intervention is key to improving the caregiver’s situation. “The best thing a caregiver in this situation can do is get their loved one to a doctor, because medication can help in most of these cases,” he said. For more on abusive behavior after stroke, see our archived article, When Loved Ones Lash Out.


Sexuality often changes after stroke. Though occasionally a survivor’s sexuality increases, the more typical reaction is diminished sexual expression. “Most people find that they have trouble with sexual interest or activity after a stroke, especially if they’re older and/ or become physically disabled,” Salinas said. Intimacy is complex, and stroke can have a dramatic effect, especially if caregiving is involved. Depression has an impact as well. “Also, other medical issues like diabetes and vascular disease impact sexual dysfunction. Actually, older medications such as beta blockers to treat your hypertension have an impact on your sexuality.”
Regarding the opposite, hypersexuality is described in the literature but all agreed it is rare. “It seems to be associated with strokes in the part of the brain called the temporal lobe,” Borson said. In some survivors, the ability to regulate their emotions is affected, and their judgment is off. “They don’t know what’s okay and what’s not. They may think that it’s okay to act on their sexual feelings. Their inhibitions are released, their self-control is reduced. So, it takes the form of a variety of different emotional drives and emotion-related behaviors, but it’s not specifically sexual; it’s more just that they are uninhibited.”
Because of societal strictures on sexual behavior, behavioral interventions may be necessary in cases of hypersexuality. For some survivors, a simple explanation of how the behavior is inappropriate may be enough. Other suggestions include not watching TV shows or looking at magazines that trigger the behavior; wearing clothing that is difficult to remove; encouraging and rewarding displays of affection that aren’t sexual; and engaging in group activities, which allow survivors to feel connected.
For more, see our archived article, Sex and Intimacy After Stroke.

PTSD and Anxiety

PTSD is much in the news these days. It is typically the result of a life-threatening or traumatic experience to which a person has developed an intense emotional reaction. They fear it happening again; they have nightmares about it; flashbacks as well as overwhelming physical reactions when exposed to any reminders of the experience. The classic example is a soldier’s experience in combat, but it is increasingly diagnosed among survivors of traumatic events. In a 2013 study of stroke survivors and PTSD, 23 percent were diagnosed with it within one year and 11 percent after one year.
PTSD is a new diagnosis as relates to stroke, and none of our experts had seen it much in their practices, though they all agreed that anxiety was common after stroke or other medical event. “So, if they have anything that seems to resemble the beginning of a stroke, their reaction may be quite extreme, fearful that it is happening again,” Borson said. “It may, of course, occasionally be the case that they are having another stroke, but usually they are not.”
“One of the most common emotional problems that people experience with stroke is anxiety,” Salinas said. “After a stroke, people often worry about getting around or driving, finances, family, his or her future especially if he or she is having cognitive issues.”
Other potential sources of anxiety after stroke are fear of falling because of balance deficits or being anxious about speaking because of aphasia. “People can become socially anxious when they’re not able to speak the way that they’re used to,” Postal said. “That is why rehabilitation hospitals use therapy dogs in speech therapy — because people are very shy and anxious about trying to speak in front of another human being, but they don’t feel that way in front of dogs because dogs are so loving and non-judgmental.”
“Anxiety is something that I think counseling can be very helpful with,” Borson said. “That would be my recommendation if someone’s having this sort of reaction. Sometimes there are elements of both anxiety and depression, so it may be worth trying medication as well.”

Lack of Awareness

Postal identifies another type of personality change that sometimes happens in survivors of right hemisphere strokes — a profound lack of awareness of problems that the stroke caused. They might have no idea that one leg doesn’t work or that they have terrible trouble with memory or can’t see half of their visual field. “The fancy term for this is anosognosia,” Postal said. “It’s a profound personality change in your ability to monitor yourself. It doesn’t always happen with right hemisphere strokes, but we know it’s something to look out for after one.”
Postal says the awareness deficit is difficult to treat because the part of the brain in charge of awareness is broken. Family members often mistake this for denial, that the survivor is in denial about the effects of their stroke. “It’s not really denial, which you can break through if you keep talking and force them to see the issue,” she said. “That strategy is spectacularly unsuccessful with a neurologically based anosognosia.
“One of the best ways to address it is to pull the family members in for sessions and explain that it’s just not going to work to have the expectation that they’re going to have awareness. This is a brain-based issue. When families accept that that part can’t work, it really reduces the tension.
“It’s just so difficult to care for someone who doesn’t know they need care. Luckily, with stroke, a lot of times that lack of awareness improves over time. If the brain heals, that can improve and be less problematic. But it really is a huge source of caregiver burden,” she said.
Borson emphasizes that personality changes after stroke are sometimes “adjustment reactions.” “They may not know what they can’t do or what they need help with,” he said. Once they start to make those adjustments and deal with their new circumstance, a lot of frustration, anger and depression calm down.
“There are some things that are permanent, and some people may always have some trouble with being more emotional than they were before,” he said. “Other people will tend to be flat and unemotional. But I do think that it’s worth trying to help someone adjust and cope with what’s happened to them. They may be left with residual effects due to the brain damage, but you want to try to get the stuff that has to do with the psychological changes better as much as possible. That’s a valuable thing for family members to do — help someone see a positive future.”
“For survivors experiencing changes in emotions, the best thing is to schedule time with your stroke professional — a neurologist, neuropsychologist or physiatrist — and try to tease out what’s physical, what’s reactive and what might be some demands that family members are making that patients really can’t fulfill in that moment,” Postal said. “And know that in all likelihood it will get better over time. We know now the brain is very plastic and malleable, and if you spend time working on a particular skill, you create changes in the brain at the cellular level. So that process occurs whether you’re practicing using a limb that’s not working as well as it should or practicing your speech, you always have the opportunity to improve over time.”