Sunday, March 22, 2020

Stroke Family Warmline


The following is from the March 2020 digital edition of Stroke Connection magazine. Thrie web site can be accessed here:
Stroke Family Warmline

The Stroke Family Warmline connects stroke survivors and their families with an American Stroke Association team member who can provide support, helpful information or just a listening ear.

The trained specialists in the ASA’s National Service Center can answer your questions about stroke. Call us 8 a.m.-5 p.m. CT Monday-Friday at 1-888-4-STROKE (1-888-478-7653).

Click the link below to hear Janet Scott describe her role as a family caregiver and Stroke Family Warmline specialist.

Janet Scott describes her role as a family caregiver and Stroke Family Warmline specialist

Sunday, March 15, 2020

Stroke Camp is a “safe adventure”


Monica, the author of this article, is a very active volunteer (and excellent photographer) at our camps, and she volunteers at many other brain injury events throughout the country. She originally posted this on our blog in January 2014. This is another one of those articles that are so good I just might post it every year.

By Monica Vest Wheeler

“Safe” is one of those words that has so many meanings, from protected and guarded to that box where we lock away our precious material possessions. “Adventure” is described as an exciting or unusual experience, which may involve risk.

From the moment I arrived at my first Retreat & Refresh Stroke Camp in June 2008, I discovered that the terms “safe” and “adventure” are perfect and fitting companions, and beautifully describe the camp experience.

As a volunteer and while collecting information for my books, I've interacted with hundreds of campers over the years, and a frequent theme of “courage” emerges. It does take a tremendous amount of courage for many stroke survivors and their caregivers to venture out into the “normal world,” where the effects of stroke may be glaring to the uneducated, with physical, emotional, cognitive, speech and other challenges.

During the numerous conversations I've had RRSC executive director Marylee Nunley, we've often noted the “safe” component of camp, where survivors and caregivers have a chance to share experiences in much more depth than the standard hour-long monthly support group setting. It's so refreshing and rewarding to engage in each other's lives and “live together” for nearly 48 hours.

At the same time, they don't worry about people staring at them in curiosity or simply ignoring them. Everybody at camp “gets it.” Do you realize how important, how fulfilling, how empowering, how human that is? Being accepted when you have difficulty speaking, when you need a wheelchair to get around, when you need some help cutting the meat on your plate? Do you know how incredible and amazing it is to have fellow caregivers who understand similar challenges and joys?

I've witnessed countless survivors and caregivers take risks they wouldn't consider exploring elsewhere. What are those “big” risks? Playing the drums, asking questions, playing games, allowing themselves to be pampered, singing or performing in front of an audience, acknowledging their fears, sharing what's on their heart, and laughing, laughing, laughing! Stroke Camp is the largest cheering block most of our families will ever find in a post-stroke world, and for some, it's a stepping stone to discovering even bigger and better adventures and audiences awaiting the gifts only survivors and caregivers can offer.

Start packing your bags! Another great Stroke Camp adventure is in the works! Tell other families they need to experience the safest adventure of their lives this year!

Sunday, March 8, 2020

Emotions - Dealing with the Five Disabilities Resulting from Stroke Part II


In last week's article written by Walt Kilcullen you read about two more of the five disabilities caused by a stroke. This week's article concludes the series and deals with the remaining disability: emotion.
by Walt Kilcullen

Part 2 (continued).

V. Problems with Emotion

V. Problems with Emotion: Many people experience a range of emotional changes after a stroke. These changes can cause the person’s personality to change and can be disruptive and problematic.

Depression is a common condition after a stroke. It can be mild or it can be all consuming. Although depression is a normal part of grief after a stroke, if it continues for the long run, professional help is
called for.

Anger is also common after a stroke. In my support group, once every two months we split into two groups; one for survivors and one for caregivers. Many times I have heard a caregiver complain about fits of anger from their loved one for no apparent reason.

Emotional Lability is a condition of the brain that causes sudden, uncontrollable crying or inappropriate laughter. Of course this can result in embarrassing situations for both the survivor and the caregiver.

Apathy is not the same as depression even though the behavior is similar. The survivor, who is apathetic, cannot seem to get motivated. He stays in bed too long, sits or lies on the couch for hours, and often will not leave the house.

Anxiety is an unpleasant feeling which often includes nervous behavior such as wringing the hands or pacing about. It is a feeling of fear or distress over something that is unlikely to occur such as a heart attack or car accident.

Treatment options for problems with emotion:

● Antidepressants, drugs that control mood, psychological counseling, and psychiatric therapy are treatments for depression, anxiety, and anger management.

● Apathy is more difficult to treat because there are no drugs available to treat it. However, therapists and counselors have had success by developing a routine for the patient to follow. This includes getting up every day at the same time and scheduling events or activities at certain times each day. The focus is on action which will later lead to motivation toward everyday life.

● I could not find any treatment for emotional lability, but fortunately after a few months, it usually (but not always) fades away.

I wrote an article in the September, 2012 issue of on anger and aggressive behavior. There are drugs that are sometimes successful in treating this problem, but there is much the caregiver can do to lessen anger.

● Remember that anger and aggressive behavior are a result of the stroke. Your loved one cannot always control this behavior.

● Stay calm. Do not over react to your loved one’s outbursts. Speak slowly and softly without raising your voice until your loved one calms down.

● Avoid arguing or confrontation with your loved one. Redirect her attention to something else.

● After you identify things that create anger in your loved one, avoid them as much as possible. For example, if you observe that being around a large group of people sets her off, avoid that environment.

● If you as a caregiver become angry or frustrated, back off and cool down. Chances are she will also calm down after you step back and remain calm.

● Stay safe. If your loved one becomes violent, back away keeping a safe distance, and seek help if need be. 

Sunday, March 1, 2020

Language and Memory - Dealing with the Five Disabilities Resulting from Stroke Part II

In last week's article written by Walt Kilcullen you read about two of the five disabilities caused by a stroke. This week's article deals with two more of the remaining disabilities he addressed, and next week I will conclude the series with what Walt wrote about emotions.

by Walt Kilcullen

Part 2.

III. Problems with language
IV. Problems with Memory and Reasoning

III. Problems with language: Language difficulties include the ability to speak, understand, write, read, add and subtract. All of these problems occur as a result of a left brain stroke.

Aphasia, which has many components, can be simplified by using just two terms. Expressive aphasia is the lack of ability to verbally express thoughts. The survivor can understand what is said, but response can be one word, or just a few words. Sometimes speech can be extremely slow, while other patients speak so rapidly, it is difficult to understand them. The second category is receptive aphasia. Sounds are heard but the patient cannot understand what was said.

Alexia simply means the lack of the ability to read. My experience is that both expressive and receptive aphasia patients experience difficulty in reading.

Agraphia simply means the lack of ability to write. This usually, but not always, goes along with Alexia.

Acalculia is the loss of mathematical ability including addition, subtraction, division, and multiplication.

Treatment options for problems with language:

An article that I wrote for the June, 2009 issue of the newsletter deals extensively with aphasia. I recommend the following:

● Join an aphasia support group. Check to find one in a location near you.

● Investigate the use of computer software and speech devices to see if they can help you with speech therapy on your own.

Bungalow software, Parrot software, Communication Script Inc, and Lingraphica are examples.

● Investigate clinics and community groups that specialize in aphasia. Again visit to see what is available in your state. Be sure to get details such as cost, and success rate before you invest your time and money.

I also wrote an article for the July, 2011 issue of the StrokeNet dealing with alexia. Although there are numerous exercises available, none to date have a high success rate.

Hope for the future

● Pharmaceutical companies are testing drugs such as Piracetam, amphetamines, and Bromocriptine to improve speech for aphasia patients.

● Neural Regeneration has also shown promise. Researchers have used cell transplantation which is designed to restore brain tissue after a brain injury.

● Constraint Induced Aphasia Therapy has also shown positive results. During CIAT, the speech therapist spends three hours per day, five days per week, for three weeks giving intensive speech therapy targeting the patient’s specific weaknesses.

IV. Problems with Memory and Reasoning: Stroke can result in problems with short term memory, judgment, and also the ability to plan, comprehend meaning, learn new tasks, and solve problems.

Apraxia is the impairment or loss of ability to carry out learned movements despite having the desire and the physical ability to perform the movements.

Anosognosia is a deficit of unawareness. The patient seems unaware of the existence of his or her disability.

Treatment options for problems with memory and reasoning:

● Most stroke survivors recognize their short term memory loss and are able to adjust to it. Cognitive therapists develop strategies such as keeping a daily planner which focuses on organizing activities one day at a time.

● There is little consensus on assessing apraxia but treatment includes speech, occupational and physical therapy. Some patients show significant improvement while others do not. Unfortunately, those patients that do not respond to therapy may not be able to function independently. There is no drug available to treat apraxia.

● No long term treatment is known to help anosognosia, however, the condition usually disappears in time.

Next week, I will post what Walt wrote about emotions. I thought emotions deserved a posting by itself. Stroke survivors can experience very strong emotions such as anger and depression and they and their caregiver must learn how to own these emotions rather than let the emotions own them. I would also like survivors know that they are not alone with these emotions and that other survivors are dealing with them also. The survivor and caregiver must come to realize that these feelings are the result of the stroke and not always under the control of the survivor yet they can be dealt with to some degree with medication and therapy. Walt addresses these issues next week. 

Sunday, February 23, 2020

Dealing with the Five Disabilities Resulting from Stroke Part I


The following is Part 1 of a 2 part series, posted six years ago in the July issue of the now discontinued StrokeNet Newsletter, titled Dealing With Five Disabilities Resulting from Stroke by Walt Kilcullen.  Part 1 deals with two of the five disabilities. Part 2 will be posted next week. 
By Walt Kilcullen
Part 1.
I. Movement dysfunction and paralysis
II. Sensory dysfunction

The degree of motor damage and cognitive damage as a result of a stroke varies greatly from patient to patient because of the part of the brain affected or damaged and how badly the brain was damaged. In this article, I have examined the first two of five categories of disabilities and how a survivor can deal with each. The other three will be discussed in September.

I. Movement dysfunction and paralysis: If a stroke happens on the left side of the brain, it will affect the right side of the body. A left brain stroke will affect the right side of the body.

Paralysis can be on either side of the body. It can be of the foot and leg, the arm and hand, or both. If there is total paralysis, there is no treatment to improve or reverse that condition.

Dysphagia, or difficulty swallowing, occurs in some patients but is usually greatly reduced or cured early on by a speech therapist.

Ataxia affects the body’s ability to coordinate movement which leads to difficulties with body posture, balance, and walking.

Spasticity or tone “is a condition where muscles are stiff and resist being stretched. It can be found throughout the body but may be most common in the arms, fingers or legs. Depending on where it occurs, it can result in an arm being pressed against the chest, a stiff knee or a pointed foot that interferes with walking. It can also be accompanied by painful spasms.” (Stroke: A Stroke Recovery Guide, a publication of the National Stroke Association, p. 52).

Treatment Options for partial paralysis, ataxia, and spasticity

● A combination of physical therapy, occupational therapy, and medication is standard treatment.

● Exercises for strength, balance, coordination, stretching, or range of motion can be helpful.

● A brace on the affected leg to provide support and to correct foot drop is often prescribed.

● Injection of Botox into the affected area to relax the muscles by blocking the nerve activity that creates the stiffness has proven to be helpful in some patients.

● Baclofen Therapy has been successful for some patients in treating severe spasticity. Baclofen is injected into the spinal fluid using a surgically places pump.

● Constraint Induced Movement Therapy has been under experiment and has shown great promise. It is designed for patients who have arm weakness and spasticity, but the patient must have some ability to move the hand. If you are interested in this research, Google: CIMT Edward Taub.

● Research is in progress using stem cells, and transcranial magnetic stimulation with the goal of reversing at least some of physical damage done by stroke

II. Sensory dysfunction: In some stroke patients, pathways for sensation are damaged resulting in pain in the side or the limb being blocked. Decreased feeling in the limbs, numbness or burning in the limbs and pain are examples of sensory dysfunction.

Decreased feeling usually in the limbs can occur but is not common.

Tingling, numbness, or burning usually in the limbs can occur but is not common.

Pain is the most troubling sensory problem because it is more frequent than the other sensory problems and it is usually more debilitating. Pain is often caused by nerve damage, or sometimes from lack of movement.

Treatment options for sensory dysfunction:

●  Decreased feeling, tingling, and burning in the limbs is very difficult to treat especially because what works for one patient may not work for another. Some patients report that continuous light exercise brings relief. Acupuncture, heat application, meditation, and prescribed medications are also reported by some to give relief.

● Pain is also difficult to treat because pain after a stroke can occur in various parts of the body. I wrote an article in the July, 2013 issue of the newsletter where I give tips on reducing pain. Yoga and meditation can help relax and teach the patient to breathe properly.

● Progressive Muscle Relaxation (PMR) is a step-by-step technique that helps the patient become aware of muscle tension and reduces the tension through a systematic approach that reduces pain. You can look at the PMR web-site to see visuals that will walk you through the PMR exercises.

● The Trigger Point Therapy Workbook: Your Treatment Guide For Pain Relief by Clare Davies has received nothing but good reviews on Amazon. Readers should give this a try.

● Chronic pain deserves treatment by a pain management specialist, and/or acupuncturist.
Part 2 of this article will be posted next week.

Areas covered will be:

III. Problems with Language
IV. Problems with Memory and Reasoning
V. Problems with Emotion


Sunday, February 16, 2020

Dilemma: Wisdom vs. Experience


David Wasielewski, the author of this week's post, was on the staff of the StrokeNet Newsletter. As you may know the news letter was discontinued a year or so ago. I have saved many of their articles, and with their permission, will be posting them from time to time. I hope you find them as interesting as I do.   
Peer Counseling
By David Wasielewski

Dilemma: Wisdom vs. Experience

As a Peer Counselor and Stroke Group Facilitator I get to see the whole variety of stroke circumstances. Stroke affects individuals in different ways. Individuals react in different ways to their stroke. There is huge variety of social and medical support that each individual has as they manage through their recovery.

Each requires the counselor to listen carefully to the survivor’s story, ask appropriate questions and, when possible, observe the social support and caregiver situation. In many of these encounters it becomes routine to maintain a sense of objectivity with the survivor, to collect and analyze information before dispensing advice or guidance. In some circumstances this becomes more of a challenge. Our last stroke group meeting presented such a challenge.

A middle aged woman was introduced to the group by her speech therapist. Many of her stroke symptoms were obvious as she sat and told her story. She was fairly young, late 40’s, had some significant speech difficulties but could communicate and be understood. She was hemiplegic, walking with a pronounced limp and had severely limited use of her left arm. She was forced to retire from her job and lost the ability to pursue her hobbies, playing a variety of musical instruments.

Her circumstances were very much like mine when I joined the group almost ten years ago. She had many of the same questions I had when I arrived, along with the frustration and anger with which many of us are familiar. Over time my recovery experience has provided me with answers to my many questions. When would the use of my arm return? When should I be able to return to work? Will I be able to return to the hobbies and activities I enjoyed?

As she posed the all too familiar questions I flashed back to my first support group visit. How would I have reacted if someone had provided the answers for which I was looking? I would not return to work, or my favorite activities. Would this advice have been helpful, or not? I hesitated as I watched the conversation unfold. Was anything I was about to say be helpful? Could I simply give her the benefit of my experience and ‘wisdom’ about stroke recovery and be satisfied that I had ‘done my job.’

As I thought back I remembered that I especially did not or could not have dealt with answers that didn’t match my expectations for a full recovery. I also recall the wisdom of the folks in the support group that prevented them from giving me what might be termed the bad news about a full recovery. They allowed me to vent my anger and frustration while they patiently listened to the angry rants of this new survivor. This was the best thing they could do and they already knew that.

As I recall my days in early recovery I am reminded how angry I was and how patient these wise folks must have been. The wisdom in the situation was to simply listen and offer support, not provide answers. The reality is that with stroke there are no sure answers. Does telling someone with severe hemiplegia that they might not expect to play the piano or flute again lessen their distress? Probably not. In some cases it can even have the opposite effect. It could cause the survivor to lose hope of a significant recovery. They might simply give up on any improvement.

I realized that, even with all my recovery experience my ‘wisdom’ in this situation was to simply listen. Many recent survivors search frantically for answers to their questions. The wisdom of the peer counselor is to realize that the answers, in most cases, do not exist. The most difficult notion in this situation is to realize that the best thing a counselor can do is support the new survivor as they make their own journey through their recovery and that no matter where their journey ends they will have support from their counselors and support group friends.

Copyright @September 2014
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

Sunday, February 9, 2020



Sometimes I get an article that deserves repeating every year. The following is a repeat of one that I put on this blog back in 2012. It is one of my favorites that I came across recently.

This essay was copied from the web site of the Rehabilitation Institute of Chicago with their permission and with the author's, Cari Biamonte, permission. Cari participated in a study done by the Rehabilitation Research and Training Center on enhancing the quality of life of stroke survivors.

This study was done to assess how writing in different ways about the experience of recovery can help physical and psychological health and activity after stroke.


By Cari Biamonte
© May, 2006

To look at me is to think I am the picture of good health. I am a 45-year-old Caucasian woman, five feet three inches tall, 103 pounds with an athletic build. I don’t drink, smoke, or do recreational drugs. I go to church regularly, work out at the gym, and floss my teeth before bedtime. I thought I was in control of my ever-challenging health issues. You see, I have a long history of health issues, none of which include heart disease, high cholesterol, diabetes, or obesity. Most people assume I am a runner. Indeed I am, or was, and will be again. I have no outward physical defects that say, “Look at me I’m a stroke victim,” but I am, or was, and NEVER want to be again.

Other diseases tested my character: childhood nephritis, ulcerative colitis, steroid induced osteoporosis, vertebral compression fractures, and chronic fatigue. Stroke was a word I was unprepared to hear. I have no family history of it, nor do I fit the profile for such a condition.

Apparently the onset of my stroke was blurred vision. Who knew? My eyesight went from focused to double to unconscious to enlightened. I guess you could say, “I was blind and now I see.” This is my story.

My eyes were closed and my body frozen in fear to the bed. I remember the doctor at the foot of my hospital bed talking into his voice recorder about my condition. He described me as one would an unremarkable specimen. I distinctly remember him saying that they wouldn’t know anything for three days. Three days? I opened my eyes and saw my mother. “GOD!” My insides screamed. “Not again. Holy Mother of God!” I thought. “My mother has seen me fall countless times before. Surely you must know the fear and pain she is feeling, for you too have watched your Son fall, suffer, and die. I just can’t put her through this anymore. I can’t stand to see her frightened. I want to live and take care of my parents, not have them continue to babysit me into adulthood.” That’s when it happened. That’s when things changed for me. There was this sudden awareness that all is well. And indeed it was.

My recovery was complete. Short of a three-week headache, neck and shoulder pain, fear of being alone and uncontrollable emotions, I was on my way to a new and exciting life!

What I didn’t know was how this sudden “relationship” with God would change my life and existing relationships. Suddenly I was struck with a conviction of all I did that wasn’t so “good.” My religion just flew out the window and my relationship with God was a sharp reality. The fact is my relationship was lost behind the trappings of religion. I didn’t have a relationship with God. In order to have a relationship, you need to spend time with someone. If I only spent one hour a week with my spouse, we would have a less then happy marriage, and so it goes with our Creator. I had a lot of work to do and a lot of forgiveness to seek.

For what purpose had I received such grace? I was feeling a tremendous amount of gratitude and responsibility to fulfill God’s will in my life. My sole focus quickly became just that. After all, I was spared from any visible impairment or death—it’s the least I could do. I felt oddly encouraged about the future, yet misunderstood by my fiancĂ©. A faithless man, a scarred and bitter man, an alcoholic who was wounded by the Vietnam War. Visually unimpaired like me, yet damaged goods still the same. What a team we make. Oil and water.

It took a great deal of soul searching and much needed prayer before I felt at peace with my decision to marry this man and thus, began exploring the new me, as did my loved ones. I could see both wonder and confusion in the faces of those who have known me. In less than two years, I had lost my job that I held for 13 years, suffered a stroke, got married, and moved 140 miles from my home. Perhaps it was unfair of me to expect anyone to understand what it was I had been feeling. How do you explain a spiritual rebirth? A sudden wisdom into other’s circumstances, a deep familiar empathy with strangers, an unconditional love for those who’ve wronged you, and an “ooohhhhh I get it now” when reading the word of God. Finding that every waking moment is spent in constant prayer. Wanting nothing but solitude. Having nothing in common with the things of this earth any longer. Who can blame my husband for feeling left out and confused?

What my husband does have is a wonderful gift for providing for and protecting me. It was as if God placed him right there to physically catch me when I stroked. That’s when the Lord began his work in me. This new and different life of mine has given me the opportunity to seek the presence of God, discover who I am, and to focus on using my talents for the sake of others. Interesting stuff. Scary stuff too.

So I suffered a stroke. Others have suffered more, some less, each one differently. No one goes through this life unscathed. What matters most is not what we learn in the midst of our suffering, but that we persevere through the suffering learning to trust and believe in the greater good that is to be revealed. This is a very abstract concept for those with no faith, for faith itself is believing in what is not seen.

I come away from this experience with this advice. When faced with unbearable pain and burdens, get up in the morning, get dressed and get out of the house. If physically possible, walk to a coffee shop or restaurant where you could meet people, read and reflect. Spend time acknowledging your circumstances, accept what cannot be immediately changed, develop a strategy for recovery, and most importantly remain hopeful in things yet to come. Do not fear.

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Rehabilitation Institute of Chicago All rights reserved