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.
***************************************************************** 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. *****************************************************************
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.
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.
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.
***************************************************************** 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
BY JON CASWELL
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.”
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.
***************************************************************** 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
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