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.”



Friday, July 5, 2019

True Love Always Assumes the Best!


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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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. 
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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.


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 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. 
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Sunday, June 16, 2019

Part 2 - Personality Changes After Stroke


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 week's article from strokeconnection.strokeassociation.org is a continuation of last week's. 
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Something's Different: Personality Changes After Stroke
BY JON CASWELL


Depression

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

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.”








Sunday, June 9, 2019

Part 1 - Personality Changes After Stroke


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 article is reproduced from strokeconnection.strokeassociation.org. Next week will be a follow up of this one. Six potential personality changes will be presented.
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Something's Different: Personality Changes After Stroke
BY JON CASWELL

Strokes change many things for those who survive them. Muscles weakened or paralyzed; walking affected; fingers unresponsive; communication challenged; cognition impaired; emotions that run the gamut. It can leave someone with any one of those or all of them or some combination, and it can span a wide spectrum of intensity and rehab-ability. Stroke can also change a survivor’s personality — that ineffable quality made up of all the attributes that define who we are to our family, friends and the outside world. “Personalities are individual patterns of thinking, feeling and behaving,” said clinical neuropsychologist Karen Postal, who teaches at Harvard Medical School and is president of the American Academy of Clinical Neuropsychology. As an example, she posits the glass half full or half empty question: “The glass-half-full person perceives things optimistically; they are positive. Someone who sees the world as a glass half empty tends to look at the negative and be suspicious of motivation. That’s an example of a constant way of perceiving and interacting with the world, which is really what personality is. Mood is something that’s overlaid on that.
“Stroke has an unpredictable impact on the basic constant personality, and that change can be really devastating and difficult for the survivor, but also for their loved ones because personality is really what we connect with,” Postal said. “Personality makes you you. And when something fundamental about that personality changes, it requires loved ones to change fundamentally the way that they act with the survivor. If our relationships are like a dance, when personality changes, when someone fundamentally changes their dance steps, that requires other family members to change their dance steps as well. It can be very disruptive.”
One can think of a stroke as something that destabilizes parts of the brain. Neuropsychologist Andrew Borson of Crozer-Chester Medical Center in Pennsylvania notes that the changes that occur are determined by which parts are affected. “You have some survivors where there was not that much impact on the limbic system, the emotion-related parts of the brain, and for them, there may be relatively lesser change in terms of their emotions and personality,” he said.
Understanding a little more about the makeup of the brain might be helpful here. Borson described the brain as a series of layers: On top (beneath the skull) is the wrinkly cortex, which controls higher thinking, reasoning, organization and language. Underneath that is the sub-cortical layer, which has to do with memory and sensory processing, as well as some motor control. The next layer is the limbic system, which controls our emotional reactions — though they may be modified by the higher levels. And below that are the brain stem and other parts of the brain that control our autonomic processes — breathing, heart rate, temperature, some types of motion.
In addition to the location, Christine Salinas, neuropsychologist and director of Space Coast Neuropsychology Center in Florida, points out that the type of stroke — clot or bleed — the size of the lesion and vascular risk factors such as hypertension and diabetes also determine the severity of cognitive deficits. Age, gender, ethnicity and education also play a role. “Typically, the smaller the infarct or brain damage, the fewer cognitive or behavioral consequences,” Salinas said. “But someone could have a small infarct in a deep part of the brain (i.e., thalamus, hippocampus, white matter, brain stem) that leads to as severe cognitive deficits as a large hemispheric stroke. In addition, a person’s personality and thinking style before a stroke may be exaggerated afterward.”





“Of course, it also matters whether it’s a right- or left-hemispheric stroke,” Borson said. “Overall, I think changes in how someone responds emotionally are pretty common after stroke.” Those changes run the gamut: Some people become irritable and angry, others depressed; some become impulsive or child-like. Some survivors become intensely emotional, while others become much less emotional — almost flat.
“A broad generalization is that right-handed survivors of left-brain stroke, which typically affects language more and causes right-sided weakness or right-sided neglect, those people tend to be more prone to flattening of their emotions, showing less emotional responsivity. I don’t think we really have a great explanation of why that occurs in terms of the brain anatomy,” said Borson.
Neuroscientific understanding of injury location and behavioral consequences is progressing thanks to neuroimaging. “Now we have functional magnetic resonance imaging where we can literally ask someone to experience emotion, and we can, in real time, track what parts of their brain are more active,” Postal said. “Our research methods are becoming more sophisticated, and after decades of research, we have a kind of road map. We know a lot about likely potholes when we have lesions in certain areas, but our map is just a schematic. It can give us a heads up that something might occur, but it does not tell us for sure that something will occur or has occurred.”
In other words, the same injury in the same place on two people may produce different results.

Sunday, June 2, 2019

At-home Exercises for Stroke Survivors


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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To view the videos provided in today's article, it is best to hold your cell phone or tablet in landscape position (long side of device toward your lap).
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At-home Exercises for Stroke Survivors

http://strokeconnection.strokeassociation.org

Woman sitting in chair stretching arms above her headExercise is a valuable yet underused component for post-stroke care. The American Heart Association/American Stroke Association suggests that survivors should be prescribed exercise because they experience physical deconditioning and often lead inactive lifestyles after stroke. That decreases their ability to perform daily living activities and increases their risk of another stroke.

There is strong evidence that physical activity and exercise after stroke can improve cardiovascular fitness, walking ability and upper arm strength as well as improving depression, cognitive function, memory and quality of life after stroke.

Following are a few exercises for stroke survivors to help with everything from balance & walking to fine motor skills, complete with video instructions.

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Sit to Stand
Click Here for Demonstration Video

This is a great exercise to strengthen the muscles of your legs. It’s vital for getting up from a seated position.

To perform this exercise you want a firm, stable surface. Either a chair or your bed. Start by getting to the edge of the surface. Keep your feet hip-width distance apart. Your feet need to be slightly behind your knees. Interlace your fingers, trying to get your nose over your toes when you stand up. Focus on maintaining equal weight on your affected and unaffected leg. As you do this, with your nose over your toes, stand up, getting your hips and your knees fully extended.

From this standing position, slowly lower down into the chair and repeat this exercise 15 to 20 times again, slowly lowering down each time.

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Supported Mini Squats
Click Here for Demonstration Video

This is a great exercise to strengthen the muscles of your legs to help with walking, endurance when walking and rising up from a seated position.

To perform this exercise, you’re going to need a stable surface. Whether it be a countertop or a chair, you’re going to face the surface — keeping your hips, your knees and your feet all in alignment. Make sure that your weight is equally distributed over your affected and unaffected leg.

As you perform this exercise, make sure that your hips go backwards and your knees do not go over your toes. You should start to feel fatigue and burning in your leg muscles. Perform this exercise 15 to 20 times.

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Dynamic Weight Shifts
Click Here for Demonstration Video

To perform this exercise, you’re going to be sitting upright in a chair. To make this exercise more difficult, do it on a less stable surface such as a ball, a couch or putting a piece of foam underneath the chair.

Once seated, you’re going to shift your weight to one side and then the other. Make sure that the side you’re shifting your weight to becomes long through your trunk and short on the other side. Repeat this exercise 20 to 30 times.
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Crumbling a Piece of Paper
Click Here for Demonstration Video

This exercise is great for working on the muscles of your shoulder and also works on the fine motor skills of your hands.

To perform this exercise you’re going to need a piece of paper and a hard surface, such as a table. Crumple the paper with both hands. When you’re crumpling the paper, make sure that you use both hands equally. That’s very important with this. Don’t just crumple it with your unaffected arm. When you are crumpling it, keep your shoulders down and back. Your shoulders shouldn’t come up toward your ears. Now uncrumple the paper, keeping your shoulder blades down and back and using both hands equally.
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Supported Reach and Grasp
Click Here for Demonstration Video

This is a great exercise for the muscles of your shoulder, elbow and wrist. It’s also a great exercise if you’re having difficulty reaching out in front of you for an object.

To perform this exercise, sit in a chair at a table, your affected arm resting on the table. Your shoulder blade should be down and back. From this position, reach out like you’re grasping an imaginary object and bring it back in. You want to focus on straightening your elbow and then extending your fingers at the end of the exercise. As you come back, you bend your elbow and make a fist. Repeat this exercise 20 times or until the muscles of your arms become fatigued.
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Sitting Trunk Rotations with Active Assistive Range of Motion Shoulder
Click Here for Demonstration Video

To perform this exercise, interlace your hands. Take them down towards your left foot and then reach up towards your right shoulder. Try to keep your elbow straight in the up position. Make sure your eyes and your trunk follow your hands. Repeat this exercise eight to ten times on one side and then do the same thing on the other.

This exercise requires a great deal of sitting balance. To ensure safety, the caregiver should stand in front of you and facilitate your arm motion.
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Standing Hip Abduction with Support
Click Here for Demonstration Video

This exercise strengthens the muscles of your hip and leg and works on weight shifts for better control during walking.

To perform this exercise, face a countertop or another stable surface. Use your arms for support on that stable surface and lift your leg out to the side, making sure that your trunk is upright and that you avoid leaning over. Keep your pelvis level. Don’t let it rotate to the side. Repeat this exercise 10 to 12 times on the right side then switch sides and repeat it another 10 to 12 times.
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Sunday, May 26, 2019

A Survivor’s Perspective


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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Continued from last week's article on Post-Stroke Depression.

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A Survivor’s Perspective

BY JON CASWELL




How did depression feel to you?
On April 3rd, I took a shower, had a cup of coffee, walked my dog, went to school, taught my 1st graders, came home, vegged out, ate supper, walked my dog and went to bed. On April 4th, I couldn’t do any of those things because I was in the ER and then ICU with a massive stroke at age 30.
I felt no hurt or pain in my body. It was silent, but the machines treating me made a lot of noise and terrified me. I just wanted to go home to my dog. UNREAL! I could not be having a stroke! After a month or so, I did go home, but I couldn’t drink or eat, couldn’t work, struggled to walk my dog and couldn’t sleep for fear of aspirating in my sleep.
I didn’t leave the stroke at the hospital or nursing home, and I certainly wasn’t Rachel when I got home again. I didn’t fit my life. I didn’t trust my body. My swallow didn’t work, and most of my body just felt dead. A stroke is a brain attack, they told me. I lost almost 2 million brain cells for every minute I stroked. And I certainly felt fuzzy. There were things that didn’t occur to me to do, things I had done my whole life — like walk my dog or do crossword puzzles, and I felt horrible when I forgot to walk her or couldn’t find words in my head for the puzzles. My mind was different, and I wasn’t in control.
And I couldn’t eat or drink. I’d never given a thought to the gift of being able to handle these basic needs, ever. But when it was gone, I lost my humanity and I didn’t want to exist. But I had no words for myself, or anyone else, about ME. I couldn’t think, feel, act or behave as I had on April 3rd. I was gone. Everything that I took for granted, and everything I did as Rachel, was gone.
I looked pretty normal on the outside — apart from the circus freak show act I saw in my twisted face. My brain didn’t work right on the inside. I could stroke out at any second. I had no control. Fear paralyzed me. I was safe at my appointments with my doctors. But at home, I just wanted to stay in bed. And then I just wanted to stay asleep and not wake up. That’s the truth.
These words were not in my head or coming out my mouth, but that was my reality. You know in the winter when you pile blanket after blanket on top of you at night to keep warm? The weight of the blankets presses you down into your bed. You are kinda cozy and warm but also increasingly unmotivated to move. You just stay under covers and after a while you are so sluggish you cannot move. I felt like that — not really sad or in pain, but not active and increasingly heavy and unable to move. I didn’t see a point to moving. And moving wasn’t easy. So I stayed under covers where I was safe.
What do you want your loved ones and friends to understand about what it’s like to live with depression after stroke?
When I was six months out from my stroke, I sent a TOP 10 LIST OF BENEFITS TO HAVING A STROKE AT 30 to David Letterman. For example: “Having a stroke where you lose your swallow is a painless and easy way to drop 20 pounds in 15 days!” I was finding a positive from my stroke. A producer wrote me back, thanking me for my entry, giving sympathy on my suffering and advising me to enter again with a less personal, more neutral subject.
They didn’t get it or me. It was raw and dark material. I was raw.
So here are my TOP 10 THINGS I WANT FRIENDS AND FAMILY OF STROKE SURVIVORS TO KNOW ABOUT POST-STROKE DEPRESSION ... from someone who knows.
10: I don’t have the words to tell you what’s wrong. I really don’t and I feel bad about it.
9: I’m not in control and I’m confused.
8: I feel like a burden. I was independent. I’m not now and it makes me sad.
7: I don’t know what would help me feel better. But keep loving me.
6: I feel unlovable. I don’t love myself. Touch heals. Hug me.
5: I don’t recognize myself in the mirror.
4: I am working harder than you can imagine, at everything.
3: Are you afraid of me or are you afraid of having your own stroke? Stroke is scary. But I am not scary. Stay near.
2: Life can’t go back to the way it was and neither can I. I’m changed. I didn’t choose to change. I don’t want to change. I can’t deal with any more change.
1: I didn’t survive a stroke to be miserable. I can be magnificent. But I need help and I need HOPE!


Rachel enjoys a playful moment with her son Jason

It hurts to remember how depressed I was for a long time after my stroke. Fourteen years post-stroke, loving her life, this Proud Stroke Survivor is brought to tears, humbled forever by memories of me then! The depression was 24/7. It is not every day now. The depression no longer renders me useless. I know the depression. It is a part of me and we are friends.
I start my day with coffee and gratitude for the ability to swallow, my kitchen, my dog and my life. As my friend Priscilla taught me, “I’m too blessed to be depressed.”
The Stroke Connection team knows that it can sometimes be hard for family and friends to understand how profoundly post-stroke depression may be impacting a survivor. 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.