Sunday, September 20, 2020

In Her Patients’ Shoes



Article provided by Medtronic

Medtronic is a global leader in medical technology, services, and solutions. We collaborate with others to take on healthcare's greatest challenges.

In Her Patients’ Shoes: Lisa’s Stroke Story

For more than 10 years, Lisa has been a stroke coordinator and cared for stroke patients in Wausau, Wisc., ensuring they get the best treatment and helping them in their recovery. She is a stroke expert.

One morning, in August 2017, Lisa learned even more about stroke: She learned what it was like to actually have one.

At the age of 51, Lisa was rushed to the hospital, her workplace, and the familiar faces of her coworkers were now treating her. Luckily Lisa received medical care quickly, but even then, she experienced several post-stroke conditions including facial droop and arm weakness. After several tests, her stroke care team couldn’t tell her what caused her stroke. Her stroke was a cryptogenic stroke, or a stroke of unknown cause.

In the months following her stroke, Lisa worked hard to recover — physically and mentally. She found her physical recovery to be progressing, but mentally, she was stressed. She didn’t know what caused her stroke and she didn’t know if, or when, it would happen again. Lisa, an independent and adventurous woman before her stroke, was scared and afraid to be alone.

Finding Peace of Mind — and Atrial Fibrillation

Lisa’s doctor suggested they use the Reveal LINQTM Insertable Cardiac Monitoring (ICM) System to monitor Lisa’s heart and determine if her stroke could have been caused by atrial fibrillation (AF). AF is a common condition in which the upper chambers of the heart beat very fast and irregularly. As a result, blood is not pumped effectively to the rest of the body and may pool and clot. If a clot dislodges, it can travel to the brain and result in a stroke. AF can happen infrequently and without symptoms and, when left untreated, AF patients have a five times higher chance of having a stroke.1

With the Reveal LINQ ICM continuously monitoring Lisa’s heart for irregular heart rhythms, Lisa found peace of mind and started gaining her independence back. She felt comfort knowing that if she was having irregular rhythms, her monitor would find them, and her doctor would be informed.

Almost one year later, the ICM detected AF and with the information from the monitor, Lisa’s doctor prescribed medication for Lisa to help prevent her AF from causing another stroke.

Lisa is now back to work and she immediately noticed her care for stroke patients has changed because of her experience — she can put herself in their shoes. She truly understands their fear, and she’s able to share her personal experiences of what helped her get through the challenges of stroke recovery.

To learn more about cardiac monitoring for unexplained, or cryptogenic, stroke, visit
Treatment with a Reveal LINQ Insertable Cardiac Monitor is prescribed by your physician. This treatment is not for everyone. Please talk to your doctor to see if it is right for you. Your physician should discuss all potential benefits and risks with you. Although many patients benefit from the use of this treatment, results may vary. For further information, please call the Medtronic toll-free number at 1-800-551-5544 (7:00 a.m. to 7:00 p.m., Monday–Friday, Central Time) or see the Medtronic website at

Reveal LINQ™ LNQ11 Insertable Cardiac Monitor and Patient Assistant

The Reveal LINQ insertable cardiac monitor is an implantable patient-activated and automatically-activated monitoring system that records subcutaneous ECG and is indicated in the following cases:

■ Patients with clinical syndromes or situations at increased risk of cardiac arrhythmias

■ Patients who experience transient symptoms such as dizziness, palpitation, syncope, and chest pain, that may suggest a cardiac arrhythmia

This device has not specifically been tested for pediatric use.

Patient Assistant
The Patient Assistant is intended for unsupervised patient use away from a hospital or clinic. The Patient Assistant activates the data management feature in the RevealTM insertable cardiac monitor to initiate recording of cardiac event data in the implanted device memory.

There are no known contraindications for the implant of the Reveal LINQ insertable cardiac monitor. However, the patient’s particular medical condition may dictate whether or not a subcutaneous, chronically implanted device can be tolerated.

Warnings and Precautions
Reveal LINQ LNQ11 Insertable Cardiac Monitor
Patients with the Reveal LINQ insertable cardiac monitor should avoid sources of diathermy, high sources of radiation, electrosurgical cautery, external defibrillation, lithotripsy, therapeutic ultrasound, and radiofrequency ablation to avoid electrical reset of the device, and/or inappropriate sensing as described in the Medical procedure and EMI precautions manual. MRI scans should be performed only in a specified MR environment under specified conditions as described in the Reveal LINQ MRI Technical Manual.

Patient Assistant
Operation of the Patient Assistant near sources of electromagnetic interference, such as cellular phones, computer monitors, etc., may adversely affect the performance of this device.

Potential Complications
Potential complications include, but are not limited to, device rejection phenomena (including local tissue reaction), device migration, infection, and erosion through the skin.

Medtronic MyCareLink™ Patient Monitor, Medtronic CareLink™ Network, and CareLink™ Mobile Application

Intended Use
The Medtronic MyCareLink patient monitor and CareLink network are indicated for use in the transfer of patient data from some Medtronic implantable cardiac devices based on physician instructions and as described in the product manual. The CareLink mobile application is intended to provide current CareLink network customers access to CareLink network data via a mobile device for their convenience. The CareLink mobile application is not replacing the full workstation, but can be used to review patient data when a physician does not have access to a workstation. These products are not a substitute for appropriate medical attention in the event of an emergency and should only be used as directed by a physician. CareLink network availability and mobile device accessibility may be unavailable at times due to maintenance or updates, or due to coverage being unavailable in your area. Mobile device access to the internet is required and subject to coverage availability. Standard text message rates apply.

There are no known contraindications.

Warnings and Precautions
The MyCareLink patient monitor must only be used for interrogating compatible Medtronic implantable devices.

See the device manual for detailed information regarding the implant procedure, indications, contraindications, warnings, precautions, and potential complications/adverse events. For further information, please call Medtronic at 1-800-328-2518 and/or consult the Medtronic website at

Caution: Federal law (USA) restricts these devices to sale by or on the order of a physician.

1 Fuster, et al. Journal of the American College of Cardiology. 2006; 48:854-906.

Sunday, September 13, 2020

Dancing with Stroke - Educating Medical Students


The following is from the Stroke Network Newsletter. They don't do a newsletter anymore but so many of their past articles are so good I like to pass them on. They have a very good online Stroke Support and Information site you might find useful: 
Dancing with Stroke
By Jim Sinclair

Educating Medical Students

Recently I had the opportunity to do presentations to four groups of third year medical students about to begin working in the rehabilitation hospital in which I volunteer as a stroke survivor peer support counselor. I was to tell them the story of my strokes and journey of recovery in an attempt to provide them with some insight into stroke and the journey of recovery from a survivor’s perspective. I realized this could be a very rare opportunity to impact the thinking of doctors in such a way that at some future point their actions could be of greater benefit to stroke survivors.

With concern about my occasional memory issues, I decided that it would be best to keep my presentation as close as possible to what I normally present to groups of stroke survivors. I chose to start my presentation as I do with all my presentations by welcoming them into our worldwide family of folks living with the effects of stroke and other acquired brain injuries and those who participate in our support infrastructure.

During my preparation it took me quite some time to settle on what things to emphasize with this group. I decided that once I had completed the chronology of my strokes and my journey of recovery, it would be best to conclude by promoting six thoughts for them to incorporate into their framework of thinking about how to work with stroke survivors.

I asked them to take a moment to envision what they considered to be a stereotypical stroke survivor. I followed this by commenting that it would be my guess that many of them envisioned a person in a wheelchair or using a walker with a multitude of issues which needed to be addressed. I emphasized that while this is often the scenario, I thought that they would be of greater service to their patients if they viewed the term survivor as embodying strength, and ability rather than having the disabilities as their primary focus.

I emphasized that they would not be working with stroke victims as the only stroke victims were those who died from their strokes. I suggested that they encourage the survivors with whom they work to adopt the attitude that the fact that they survived an event that kills a great many people indicates a strength and ability that will assist them as they move forward in their journey of recovery.

I reminded these young people who were about to become doctors that I was certain that they were already aware that the story of my strokes and journey of recovery were mine alone and that every survivor has an experience that is unique to them and needs to be approached in a manner relevant to that uniqueness. During the second session someone cited the example of a young survivor who had indicated that he did not want to be considered to be disabled. He was differently abled. I repeated this concept in my third and forth presentations.

I recommended to these groups that they not approach their stroke patients with a narrow focus solely concentrated on the physiology of the stroke; but instead approach with a wider global view that is inclusive of the family. I pointed out that while the actual physical event occurred within my brain my wife/carepartner was every bit affected as I, if not more so, and requires every bit as much attention. Additionally many of us become dependent to some degree on our carepartner such that their involvement in the process is essential.

One of my primary goals was to encourage these young folks to help their stroke patients adopt an attitude that their rehabilitation and recovery is not about going back to what they were prior to their stroke; it is about continuing on with their life and attaining a quality of life that is meaningful and satisfying in terms as defined by each individual given their present circumstances.

I suggested that when discussing prognosis their emphasis should be more on positive possibilities rather than likely outcomes and that they should not hesitate in encouraging survivors to dream big as this leads to setting goals; which is necessary if the best possible recovery scenario is to be achieved. If our future is to include the worst possible scenario we will be forced to deal with that as we move along in our journey.

I noted that they needed to be very clear and concise in their communications of possible negative scenarios. At times when a doctor says “you should prepare yourself for the possibility that you will never walk again” all many of us hear is “you will never walk again.” At times when critical information such as this is presented it would be advisable to have the survivor repeat back exactly what was said to insure the information was correctly received.

My sixth suggestion was that it was essential to promote an attitude of taking small steps slowly and that a survivor’s journey of recovery is more akin to a marathon than a sprint. Having had the opportunity to repeat the presentation to four groups over two days I know I emphasized all these points, but with my memory issues I doubt that I covered all the issues with all the groups.
Copyright ©October 2014
The Stroke Network, Inc.P.O. Box 492 
Abingdon, Maryland 21009
All rights reserved

Sunday, September 6, 2020

Street & Steeple by Phil Bell


Phil Bell is a retired pastor, University Baptist Church, and a stroke
survivor. He continues to write his Street & Steeple articles for
his local newspaper. I believe this is good therapy for him, and
reading his work may be good therapy for you, too.
Street & Steeple for August 21, 2020
“God Will Take Care Of You!”
By Phil Bell, retired, pastor, University Baptist Church

There is a lot of suffering and anxiety in our world today! Macomb is no exception. The chances are good that you are particularly concerned about the coronavirus, some other threat, or are going through some kind of major catastrophe of your own right now, causing you to despair and lose hope. If so, I’ve got very good news for you! Help is available from God Himself! 

The God who is all knowing, all wise, works outside of time restrictions, is present everywhere, has unlimited power, created you and, in fact, the entire universe , and has limitless love for you! “Be not dismayed whatever betide you, God will take care of you. Beneath His wings of love abide you. God Will Take Care Of You. Through days of toil when heart doth fail. God will take care of you. When dangers fierce your path assail, remember, God will take care of you. Through every day, o’er all the way, He will take care of you. God will take care of you!” 

No, a fit of poetry did not suddenly take control of me. With thanks to Civilla Martin, I’ve just shared her words to the beloved hymn, “God Will take care of you.” Not only do the Scriptures affirm it, but, by personal experience, I promise you that it’s true! First, let’s consider the Scriptures. In the sixth chapter and twenty fifth verse of Matthew, Jesus is speaking to a crowd about the futility of worry. He does, of course, a lot better speaking about worry than I do when talking about worry to my wife. My tenancy is to simply say, “That’s the dumbest thing I’ve ever heard. Just don’t worry about it!” Then I wonder why Nancy isn’t comforted and still worrying! 

In Jesus’ sermon He talks about how not even one fallen sparrow escapes the Father God’s attention and that we are so much more valuable to Him than a sparrow. Also, God has clothed the flowers of the field more beautifully than even Solomon, in all his wealth, could have clothed himself. Again Jesus states that we are much more important to His Father than all the flowers of the field. Thus, we should depend on God rather than worry and, besides, He asks, “Which one of us can add a year to his or her life span by worrying?!” 

So, just how does God go about caring for us? An example is in the fourth chapter of the gospel of Mark beginning with verse 35. Jesus who was God incarnate, is with His disciples, teaching the crowd from a boat with the crowd on the shore of the Sea Of Galilee, Mark tells us, “On that day when evening came, He said to them ( the disciples ), ‘Let us go over to the other side.’ Leaving the crowd, the disciples took Him along with them in the boat, just as he was, and other boats were with Him. And there arose a fierce gale of wind, and the waves were breaking over the boat so much that the boat was already filling up. 

Jesus Himself was in the stern, asleep on the cushion; and they awoke Him and said to Him, ‘Teacher, do You not care that we are perishing?’ And He got up and rebuked the wind and said to the sea, ‘Hush be still’ And the wind then died down and it became perfectly calm.” Needless to say, the disciples were plenty impressed and equally relieved! That was an example of God taking care of the twelve! 

God did it by changing the circumstances, but sometimes He does it by changing His children instead. Jesus could have as easily calmed the disciples and enabled them to reach shore safely had the storm continued even if they had had to swim part of the way. 

One of my favorite songs is performed by Scott Krippayne. Its name is “Sometimes He Calms the Storm, Sometimes He Calms his Child.” It’s lyrics include, “How quickly blue skies can grow dark and gentle winds grow strong. Fear is like white water to our soul, but we sail on knowing that our Lord is in control. Sometimes He calms the storm with a whispered peace be still. 

He can settle any sea, but it doesn’t mean He will. Sometimes He holds us and lets the wind and waves run wild. Sometimes He calms the storm, sometimes He calms His child!” You may, indeed, feel like your blue skies have suddenly turned dark, your winds increased & began to rotate like a funnel cloud, and you would like to wake Jesus and say, “Don’t you care that I’m perishing down here?” 

I felt that way once, too. in fact, I had the ill - conceived gall to tell God I was angry with Him! That was after my massive stroke about which you’ll read later. 

If there are no actual wind and waves to command, how, then, does God go about taking care of us? There is a magnetic sign on my refrigerator which reads, “Friends are God’s Way Of taking care of us.” I believe that’s probably the way He does it most often, but there are others, including the skill of professionals and His divine intervention! 

In this time of suffering for so many, there are some for which it is especially fierce, such as those in the eastern U. S. who must be asking, “What’s next and why us? First the pandemic, then a tropical storm catastrophe! The residents of Beirut, Lebanon, are surely asking almost the same questions! “First, the pandemic, then the explosion catastrophe!” The same questions, no doubt, are being asked by some right here in the Midwest, “First, the pandemic and now the wind storm catastrophe!” 

For me, personally, the order was reversed, “First, the catastrophe of a massive, debilitating stroke, then the pandemic. 

As some, if not many, of you know, at the age of sixty, while serving as pastor of University Baptist Church, on January fourth, 2012, at about 3:30 in the afternoon I was felled by a massive stroke in my brain’s right hemisphere requiring an ambulance ride to MDH, a life – flight to OSF Hospital in Peoria, and a craniectomy to save my life, after each hospital’s ER doctor had told my wife, Nancy, most likely I would not be still alive come the morning! 

You ask, “Just how was God taking care of you through all that?!” My answer is, “He preserved my life either by skilled professionals or His divine intervention, most probably by both!” The fact that I’ve written this article is proof I am not in heaven, to some people’s dismay, including mine sometimes! 

My purpose in relating this experience of mine is to encourage any of you who might be going through something similar or, maybe, worse, and are losing hope for the future and trust in God! As well as friends, God uses His children, the church, to also provide His care. 

Let me give you an example. After leaving the hospital I spent time in Heartland Healthcare here in Macomb, arriving with a feeding tube in place due to my inability to swallow. I went there for care by its nurses and rehabilitation by its therapists., both of which were outstanding! Early on, Nancy applied to FICA for disability payments for me. They were approved but hadn’t yet started when the Deacon Chair of University Baptist came to Heartland to talk to Nancy and me. He told us that the church had voted to continue paying me my salary until the disability payments commenced, considering me on medical leave. 

Since I had, before becoming pastor, chaired the committee which wrote our Bylaws, I happened to know that the phrase, “medical leave” appeared nowhere in the document! Those wonderful brothers and sisters had created the term just for my situation! If that’s not God taking care of us I don’t know what is. He simply used His children and our friends! 

Then He used skilled professionals again as the Heartland’s excellent therapists had me eating, drinking, and transferring to the extent that I was in shape to go home, which is where Nancy brought me on July 5th of that very year, where I would lie awake at night thinking how unfair, my life is over! ! 

Yes, I would have preferred He’d calmed the storm by immediately making my body whole again, but He chose to calm me! It has not been easy for either Nancy nor me, but God has been faithful to enable us to weather very storm with calm assurance of His love and provision! 

He has indeed begun to restore my health. I have only two remaining of the initial six stroke related physically restrictive consequences, that of still being paralyzed on my entire left side and having a constant pain in my head, which, even that God is working on. Until about a month ago, I had described the pain level as an”8” ever since I woke up from the stroke. Suddenly, recently, it occurred to me, my pain isn’t as bad. I think it’s only a “3” now! I want you to know that He wants to take care of you, too! 

Don’t be surprised if God not only takes care of you through a catastrophe, but, also prepares you for it in advance. That is my testimony! 

The fall of 2011 I had no health insurance. Nancy’s group health insurance company had its open enrollment period and we both thought it prudent to add me. I don’t even want to think about what we would have done about the horrendous cost of all the medical procedures I’ve required. We would have had trouble paying the cost of the life – flight alone! I assure you that is not the way to take your first helicopter ride. Not only was it extremely costly, but the view was lousy! 

Actually, God began preparing me for the stroke much earlier. He started in the fall of 1969 in the Capital room of the WIU student union when he introduced me to a junior coed named Nancy Jean Riley who would become my wife in 1972. He knew she’d be a woman to honor her wedding vows, even in the most awful “bad” and most terrible sickness” either of us could ever have imagined! Not a day goes by but what I thank God for giving her to me as part of His care, nor a minute of a day in which I don’t ask for His help, which He gives without reservation! 

As I wrote earlier, of course, I don’t know what catastrophe you’re enduring. It may indeed be greater than any person has ever suffered before you! 

Consider, if you will, how it compares to how the apostle Paul described his sufferings in the 23rd verse of the 11th chapter of 2nd Corinthians when writing about those sufferings in comparison with other Hebrews, “In far more imprisonments, beaten times without number, often in danger of death. Five times I received from the Jews thirty-nine lashes. Three times I was beaten with rods, once I was stoned, three times I was shipwrecked, a night and a day I have spent in the deep. I have been on frequent journeys, in dangers from rivers, dangers from robbers, dangers from my own countrymen, dangers from the Gentiles, dangers in the city, dangers in the wilderness, dangers on the sea, dangers from false brethren. I have been in labor and hardship, through many sleepless nights, in hunger and thirst, often without food, in cold and exposure.” 

Can your situation compare with that? If So, if God was able to take care of Paul, which He did, are your problems too great for Him to take care of you? I think not! Please put your trust and faith in Christ to become a child of God if you haven’t already. If you don’t know how to do that, ask your pastor. If you don’t have one, ask any Macomb area church pastor or reach out to me. 

I guarantee you, whatever your catastrophe, even if it is of your own making, you will go through it infinitely better with the maker of the universe providing for you! It is no sin to be distraught and fearful in this time of pandemic, with its uncertainty and feelings of having such limited control over you own life, but, again, I say to you, do not despair, “God will take care of you!” He most certainly has me! He also promised me a full recovery, if not in this life, definitely so when I meet Him in the clouds! He desires to do that for you also!
  • Phil Bell, retired pastor, University Baptist Church

Sunday, August 30, 2020

Education in Recovery



Dancing with Stroke
By Jim Sinclair

Education in Recovery

Little did I think during my career as an educator and counselor that the greatest educational challenge during my lifetime would be after my stroke. I had to be re-educated in terms of all those things that I could no longer do or had great difficulty doing following my strokes. If memory serves me correctly my re-education began with my speech. Shortly after my strokes I learned that while I was considered to be somewhat aphasiac my bigger issue was the paralysis present in the left side of my face, mouth, tongue, and throat.

The paralysis not only affected my speech, it impacted my ability to chew and swallow and contributed to issues such as biting my tongue and inner cheeks. That part of my education, which was the start of my rehabilitation and recovery, began with tongue and lip exercises. As the paralysis began to subside somewhat I was promoted to exercises involving letters and words. The letters B and P became my first challenge.

Once I could reasonably pronounce the B’s I was given words beginning with B to practice repeatedly. At this point ten years later I don’t recall the words or phrases; I only recall that I enjoyed making the B sounds and would lie in bed making B sounds while wondering why someone with three university degrees would be forced to making baby sounds.

I believe that this is when I learned that if I was going to progress I would have to be prepared to do whatever was required of me, no matter how disagreeable. It seemed that I was working on saying P’s forever. Clearly the strategy of learning though repetition was employed when I was required to persistently say “People in Pittsburgh are polite.” While I grew to detest the phrase I continued saying it repeatedly throughout my three month hospital stay since the last paralysis to leave was in the left side of my face and mouth.

This experience has proven to be of unexpected value. In my roles as a Stroke Survivor Peer Support Volunteer, I occasionally make oral presentations to groups. In discussing how well I have progressed I can refer to my People in Pittsburgh are Polite experience and explain that I no longer have problems with my P- P- P’s except for my lack of Patience. My problems are now with my F-F-F’s. When I do Foolish things, I get Frustrated. I frustrate my wife, and a flurry of fowl four letter obscenities flows forth from my mouth.

As I become aware of this after the fact, I do make attempts to subdue my verbal reactions when I realize that I am becoming frustrated. Once I returned home my speech was very low and monotone, so I had to teach myself to project and enunciate so as to be heard properly. As with a great many stroke survivors much of my time in the rehabilitation hospital was dedicated to learning to walk again. While I had been discharged from hospital with a wheelchair and a walker I could walk a little with someone attending to my belt.

I didn’t realize when I first returned home that I had only learned how to sit down and stand up using a wheelchair, which meant that I could only use regular chairs with arms. It was at this point that I learned that following a stroke a survivor may be unaware of certain things that they are unable to do until they are unsuccessful in their attempts. This realization was quickly reinforced when my wife handed me a remote control and asked me to turn on the television.

It looked somewhat familiar but I had absolutely no idea what to do with it and just sat there confused. This set in motion my re-education of all things technological. Once I had mastered the functioning of the remote, my youngest son, who was living with us, took up the challenge of re-introducing me to the computer. My first session was much like my remote control experience in that I stared blankly at the screen feeling that it was somewhat familiar.

I had absolutely no idea what to do until my son showed me the power button. He explained that I first needed to turn it on. Having had my Driver’s License suspended solely on the basis of a doctor’s report of hospital observations, I was convinced that if given an opportunity I could demonstrate that I still had the ability to drive. Once I was given authorization to initiate the process to re-acquire my License I was able to pass the written portion of the exam.

I did so by dedicated repetitive studying of the material. During the road portion of the exam I had no idea that I had lost the ability to drive until the Driving examiner reached across to take control of the car. Once I completed a series of driving lessons, I successfully passed the road test. It wasn’t until after three years of driving that I realized that there was something not quite right with my driving. I quit driving for two years while I worked on improving my focus and concentration to the point that when I drive my entire focus is on my driving.

Much of my time during the first few years following my strokes was dedicated to re-learning many of the very little things that I didn’t realize I was unable to do until I had occasion to try. Slowly over time there became less and less that I needed to relearn. Two and a half years ago, I had my first post stroke opportunity to walk barefoot on a sand beach and discovered that I was unable to do so without almost falling over. I was confident that given time I could re-learn how to walk barefoot in the sand.

Once I learned that I could manage the same walks if I wore my sandals I felt there was no reason to work at walking barefoot. My most recent post stroke learning relates to my struggle with F’s as previously noted. Recently feeling that I should probably do something about the 4 letter F words that will occasionally be part of my speech, I believe that I have learned something new.

As with many stroke survivors there was a lengthy period post stroke when I would burst out crying for no apparent reason. I reached a pint when this frequent crying simply stopped. I now believe that much of the crying was the result of the frustrations and my inability to express them in any other way. If my occasional salty language is the manifestation of my frustrations this is much preferable than the crying.
Copyright ©September 2014
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

Sunday, August 23, 2020

Growing with Acceptance



Growing with Acceptance
By Jeanette Davidson

Turning Losses into Gains

Initially, in the early days after my stroke, I felt like I LOST so much of myself and my capabilities. I couldn't read, I couldn't write, I couldn't use the computer, cook a meal, or do laundry. Most importantly, I couldn't think or process information. Working was not an option. I felt like I deserted 90 of my bereavement clients from my job at Hospice. They were grieving the loss of a loved one and now they lost me, their therapist. So I was not only dealing with the loss of my health, but the loss of my career. On a few occasions, I would cover the surface of my nightstand with piles of tear filled tissues. I was stunned, shook, frightened. Anxiety was my core driver as I would wallow in self-pity and doubt.

I barely allowed myself space to grieve, because I felt so afraid that if I met my grief head on it would envelop me entirely. I felt like I went from 49 years old to 70 years old overnight.

Then as time progressed, little by little, I saw my attitude changing. I began to love having the mornings to relax and sip tea on my patio without having to rush off to work. I started writing a daily gratitude journal, documenting all the little things in my life that brought me joy. Living in the present moment became something I cherished. I found myself having time to listen and have quality time with the people who mattered the most to me. I had perspective, empathy, and love that I wanted to share with others. My stroke began to take on a different meaning. It no longer defined me. I made this list as a reminder to myself of all the things I now can do since my stroke.

- Be courageous
- Overcome
- Be empathetic
- Be still
- Embrace every moment
- Live and value everything and everyone in my life
- Be a joy seeker
- Believe
- Have perspective
Value the wow of now

So eventually, my life became not about all the things that I had lost, but all the things that I had GAINED, deep within myself. I gradually learned that letting go is really about accepting the truth of what has happened. Once I was able to accept, many of the gifts of my stroke began to follow. I believe that illnesses and challenges show up in our lives to remind us to love and live more fully. There are always challenges we still continue to face, but on most days I focus on the gains and count my blessing as I begin each new day with hope and gratitude.

I wish you the same!

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

Sunday, August 9, 2020

Guidelines for Interacting with a Stroke Survivor


This was posted by Michael Davis on our Community Facebook page and I think it is something we all need to take to heart when interacting with stroke survivors.
Guidelines for Interacting with me, a Stroke Survivor

Treat me the same way as you did before my stroke – I am the same person.

Every stroke is different; therefore every stroke survivor is different.

Common impairments for stroke survivors are: Vision, balance, speech, hearing, and paralyzed on one side.

Some stroke survivors have difficulty communicating verbally as well as reading, writing, spelling, and understanding what is being said, this is called aphasia.

Our brains have been rewired which affects our communication. So, we need you to: Give us enough time to respond. Talk slowly; offer at times to repeat yourself. Be patient when trying to communicate with us. It is okay to help us find a word when we are having trouble.

There are other ways of communication besides words: gestures, facial expressions, body language, pictures, pen & paper.

Treat us like adults and not children. Speak directly to us, not our spouse or friend. Don’t talk like the stroke survivor isn’t there.

Listen for my speech, is it slurred or am I saying words that makes no sense.

Give the stroke survivor a chance to be independent. Ask before you help them. Follow his/her instructions for initiating the help.

Many stroke survivors have problems with balance. A rough pat on my back, shoulder, or arm can easily set us off balance and can hurt me.

Be gentle and understand that it can take a lot of concentration to walk, especially on uneven surfaces.

When we are tired and/or frustrated, ALL of our basic skills (i.e. talking, walking, handwriting, and concentration) diminish. If we are more agitated than usual, we are probably tired or frustrated! Have patience and encourage us.

Sunday, August 2, 2020

Balance/Neuro Clinic 2020 Signup


Recruting for the Fall 2020 RFUMS Neuro Balance Clinics now! Please share this with clinicians and people who may be interested.

Sunday, July 26, 2020

All About Stroke Part 2



Jan Jahnel RN, CNRN is the Stroke Nurse Coordinator for the INI Stroke Center and INI Stroke Network at OSF Saint Francis Medical Center in Peoria, Illinois. Jan has 14 years of neuroscience nursing experience with the last five years focusing on stroke processes and care. Her commitment and dedication has been an important part of Stroke Camp. She works very closely with Retreat and Refresh Stroke Camp, attending many weekend camps, helping with some of our fund raisers, and providing us with technical knowledge about strokes. 

                                       Stroke Diagnosis

The diagnosis we're covering here is that which comes after the stroke survivor has entered the hospital. I am assuming you already know the F.A.S.T. and the "Give Me 5" method from Part 1 for telling if someone is experiencing a stroke and that you have rushed immediately to the hospital within three hours of the first symptom. 

Once in the hospital, it is critical for the medical personnel on site to diagnose the stroke in progress. Timing is very important. 

                     Time lost is brain lost!! 

That is why timing is so important. Time lost is brain lost.  It is important to quickly recognize, diagnose and treat the stroke while it is happening.

                       Types of Diagnosis

CT-or Cat scan is a key test. It is usually the first test given to
   patients with stroke symptoms. Determines whether there is
   bleeding in the brain. 

Angiography- groin area puncture with dye injected into the 
   vessels. This gives a picture of the blood flow to the brain. It will 
    show size, location of blockage, aneurysms and malformed    
    blood vessels.

Carotid doppler- this is an ultrasound of the neck vessels to 
   assess for narrowing of the neck vessels. 

Echocardiogram- ultrasound of the heart assessing for

   problems with the heart or poor pumping action. 

MRI –like the cat scan it produces an image of the brain. This 
   image is used to diagnose small deep injuries. 

Lab work-up – This helps determine other possible causes for 

   ischemic strokes. 

Acute Stroke Treatment

MERCI device- FDA approved device: catheter with a small corkscrew device that grabs the clot. The Merci device is a catheter that is threaded up through the vessel to the clot.  Then a small corkscrew device is threaded through the catheter and into the blood clot.  The corkscrew device and the clot are then pulled back into the catheter and out of the blood stream

Penumbra device- FDA approved device: a catheter with a separator and a vacuum that separates the clot into small pieces that are then vacuumed into the catheter. 

Intra-arterial t-PA: t-PA is injected directly at the site of the clot. This also involves taking the person to have an angiography.  The catheter is threaded up to the clot site and the medicine is injected directly at the clot.

The only FDA approved acute drug treatment for an ischemic stroke is IV t-pa (ischemic stroke are those strokes caused from a blocked vessel). Time is also important for determining treatment for strokes. This drug must be given within 180 minutes of symptom onset. Symptom onset is the last known time the person was “normal”. This means the person must get to the hospital, obtain a CT scan and have the medication available. Strict guidelines are used to decide if a patient qualifies for this treatment. Many factors may disqualify a patient from receiving this treatment. It cannot be given to everyone, especially for hemorrhagic strokes, (those strokes caused from bleeding into the brain.) Complications with IV t-pa include hemorrhage in the brain so patients receiving IV t-pa will be in the ICU for at least 24 hours with hourly assessments.

Treatment for Hemorrhagic Strokes 

Intracerebral hemorrhage-There is no approved acute drug treatment for a hemorrhage in the brain. The doctors will want to keep the blood pressure controlled and not let it get too high. They may administer blood products such as plasma or platelets to help the blood clot especially for those on any type of blood thinners. Surgery or catheters (Ventriculostomy) may be used to drain or remove fluid and blood from the brain.

  Aneurysm Treatment

There are two types of treatment available for strokes caused by an aneurysm rupture; 

Endovascular Coiling - A tiny catheter is threaded from the groin artery up into the brain artery and into the aneurysm. Tiny platinum coils are released into the aneurysm to seal it off. Endovascular treatment originated in the 1980’s by an Italian physician Dr. Gugleilmi.  With the origination of this new treatment some patients who were told the aneurysm was inoperable now have hope for a treatment. Other patients because of advanced age, medical condition, or other factors who could not tolerate open brain surgery this could be an alternative to their treatment.

Clipping Surgical Clipping is still the most common surgical treatment for brain aneurysms.
This requires general anesthesia, incision into the skull and removal of a section of bone.
Under a microscope the aneurysm is carefully separated from the normal blood vessel, it is then clipped with a tiny clip somewhat like a clothespin. With the clip in place no more blood can enter the aneurysm.
That's it for Part 2. I hope this was not too technical, but I did find it interesting and thought it was worth passing on to you. Next, in Part 3, I'll cover what the stroke survivor can expect from the Brain Attack and what will happen after being admitted to the hospital.

Friday, July 17, 2020

All About Stroke Part 1


by Jan Jahnel

Jan Jahnel RN, CNRN is the Stroke Nurse Coordinator for the INI Stroke Center and INI Stroke Network at OSF Saint Francis Medical Center in Peoria, Illinois. Jan has 14 years of neuroscience nursing experience with the last five years focusing on stroke processes and care. Her commitment and dedication has been an important part of Stroke Camp. She works very closely with Retreat and Refresh Stroke Camp, attending many weekend camps, helping with some of our fund raisers and providing us with technical knowledge of stroke.

The following is a Power Point presentation she has provided that explains many of the technical aspects of a stroke. I have modified it and converted it to a multi-part series in blog format. (Please forgive the blurriness of the first picture. It's the best I could do during the conversion from Power Point to blogger format)

In this picture you can see the different lobes of the brain. It also shows some important areas within those lobes, such as speech areas, vision areas, and areas for reading and comprehension. Damage to these specific areas will result in difficulty with speaking, understanding what is being spoken, problems with vision, and balance.

The left side of the brain controls the right side of the body, language centers and logical thinking.

The right side of the brain controls the left side of the body, recognition and sensory/spatial perception.

With the brain, the right side of the brain controls the left side of the body and vice versa. The right side of the body (arm and leg ) will be affected with a left sided stroke. The left side of your brain also controls logical thinking and your language.

The right side of the brain is responsible for vision and recognition. It also controls the movement and sensation of the left leg and arm. The brain is a very complex and important organ. Any interruption to the normal functioning of the brain can cause many problems.

Brain Attack

Strokes happen in the brain. The “Brain attack” term is used to show that a stroke is as serious as a heart attack. Lack of blood supply to the brain results in damage to the brain tissue causing injury to the brain. Without adequate blood supply the brain tissue dies. Stroke symptoms will depend on the size of the stroke, the location and vessel in the brain that is injured.

Stroke Symptoms

Types of Strokes
- Ischemic
- Hemorrhagic

There are two types of strokes. If you think about stroke as a plumbing problem an ischemic stroke occurs when the pipe gets clogged and a hemorrhagic stroke occurs when the pipe bursts.

Ischemic Strokes

Here are some examples of how the pipe can clog. An atherosclerotic clot is caused by fatty plaque buildup in the vessels. These fatty deposits stick to the vessel wall and caus narrowing, slowing down the flow of blood. As these fatty plaques build up, the vessel looks at this as an injury and sends out cells to repair itself. This causes a clot to form and either stops the blood flow to the brain or the clot can break away from the vessel wall and travel to the brain. This is called a thrombotic stroke

A blood clot that travels to the brain is called an embolic stroke. These are usually caused by a wandering blood clot, usually from the heart or the neck vessels. Atrial Fibrillation( which is an irregular heartbeat) or a PFO ( which is a small hole between the chambers of the heart) may be the reason these clots form and are carried in the blood stream, clogging the vessels leading to the brain.

When this happens blood supply to that area of the brain is cut off and brain injury occurs.

Hemorrhagic Strokes

Another type of stroke is called a hemorrhagic stroke. This is when the pipe or vessel bursts and blood is spilled into the brain. This is a CAT scan picture of bleeding into the brain. The white area shows where the bleeding has occurred.

An arteriovenous malformation is an abnormal cluster of arteries and veins all tangled together. These tangled vessels in the brain can rupture and bleed, causing a stroke.


A weakened area or a ballooning of a vessel wall

An aneurysm may happen in an area of the vessel where it splits….kind of like a T in the road. The blood vessel weakens and the vessel wall balloons at the split. The aneurysm can grow very large. The walls of the aneurysm become very thin and finally ruptures spilling blood into the brain. This is called a subarachnoid hemorrhage.

Cause of Hemorrhagic Stroke

Long standing Hypertension: High blood pressure that is not
controlled adequately. There are some reasons why the pipe
bursts. Long standing high blood pressure that has not been
controlled can weaken the vessels over time and cause them to
leak or burst.

I hope this gives you a little insight of what a stroke is and a little idea of what the brain looks like and its many functions. In the near future I will be covering other topics such as some diagnostic tests stroke survivors will experience in the hospital and different types of treatments while there, what stroke survivors may expect while in the hospital and later when released, managing risk factors, rehabilitation, and what support is available after the survivor has been released from the hospital.

Sunday, June 28, 2020

How Healthy Sleep May Prevent Strokes


While at our Lincoln stroke camp, August 2013, I met Marcia Matthies, Outreach Coordinator for the Nebraska State Stroke Association. She gave me permission to reproduce on our blog any article they have on their site.

This article is packed with information on sleep apnea, and includes many links to even more information.

The following is taken from the Nebraska State Stroke Association web site ( 

Thank you Marcia

How Healthy Sleep May Prevent Strokes
March 31, 2020

Since stroke is the fifth most common cause of death in the United States, people are eager to find ways to prevent it. Research suggests that sleep health is a major factor related to stroke risk. There is strong evidence that obstructive sleep apnea in particular significantly increases a person’s risk of having a stroke.

This page contains an overview of the many research studies on sleep health and strokes. It also contains information on how to prevent sleep issues that could potentially increase a person’s risk of having a stroke. While the link between sleep health and stroke is not perfectly understood, improving one’s sleep health is beneficial in general, and likely also beneficial in regards to stroke risk.

How Sleep Health Can Cause or Prevent Strokes

Stroke is the fifth leading cause of death in the United States. A stroke happens when a blood clot travels to the brain and blocks a blood vessel, or when a blood vessel in the brain bursts. The following are signs of stroke:

Sudden numbness or weakness, often on one side

Sudden difficulty speaking or understanding
Sudden severe headache
Sudden sight problems
Sudden dizziness or trouble walking

Because strokes can be so deadly and damaging, researchers have been studying how to prevent them for decades. They’ve found many factors that put people at risk for stroke. Some are uncontrollable, such as race, age, the presence of certain genes, and having a low birth weight. Other stroke risk factors include physical inactivity, high cholesterol, high salt intake, high alcohol intake, high blood pressure, obesity, diabetes, cigarette smoking, and more.

Researchers have found that there is a connection between sleep and strokes. The connection between obstructive sleep apnea and strokes is the most well-documented, though there is also a connection between strokes and other sleep disturbances. The following sleep issues are potentially related to strokes:
Obstructive sleep apnea
Central sleep apnea
Restless Leg Syndrome (RLS)
Periodic Limb Movements of Sleep (PLMS)
Sleep loss
Too much sleep

Source: Journal of Stroke

Can Sleep Apnea Cause Strokes?

While researchers do not confirm that there is a direct cause-and-effect relationship between sleep apnea and stroke, they do state that the disorder is an important risk factor for stroke. People who have sleep apnea should take their stroke risk as seriously as those who have high blood pressure or diabetes, or who smoke cigarettes. There are several ways obstructive sleep apnea impacts the body that might explain why it increases stroke risk:
Increased sympathetic nervous system activity
Increased inflammation
Reduced insulin sensitivity
Decreased ability to break down fats
Other cardiovascular and metabolic dysfunction

Researchers recommend that stroke patients undergo a polysomnography, or sleep study, to test for obstructive sleep apnea. Many stroke patients end up having another stroke. Treating obstructive sleep apnea through the use of a CPAP machine may reduce the recurrence of stroke.

A connection between central sleep apnea and strokes has not been confirmed, but central sleep apnea is clearly connected to cardiovascular disease. Cardiovascular problems are closely associated with stroke, so it could be that a clearer link between central sleep apnea and strokes will be found in the future. Anything that negatively impacts the cardiovascular system could potentially increase stroke risk.

One study on obstructive sleep apnea noted that disturbed sleep increases the chance of obesity both directly and by leading to increased food intake and decreased physical activity. Obesity increases the chance of developing obstructive sleep apnea, which along with other factors, increases stroke risk. In this model, disturbed sleep does play a role early on in the path to stroke.

Source: Sleep Medicine and Disorders

Other Sleep Issues and Stroke

Sleep apnea isn’t the only sleep-related issue that increases a person’s chance of stroke. One study showed that non-apnea sleep disorders (NSD) increased stroke risk, particularly in men and the elderly. Non-apnea sleep disorders refers to any sleep disturbance that can’t be attributed to sleep apnea, such as insomnia, sleep disturbance, hypersomnia (too much sleep), disruptions of the 24-hour sleep/wake cycle, sleep-related movement disorders, and any other sleep problems.

Sleep duration is also related to stroke. One study found that both people who sleep less than five hours or over nine hours per night are at an increased risk of dying from stroke or heart attack. This result held true regardless of age, sex, race, smoking status, and body mass index (BMI). While the reason for abnormal sleep duration wasn’t studied, it’s likely that some of the people not obtaining enough sleep have insomnia.

Another study found that people who slept over ten hours per night were more likely to die from cardiovascular problems, including stroke. This could be due to poorer health in those sleeping for longer durations, however.

Studies suggest that movement disorders such as Periodic Limb Movements of Sleep (PLMs) and Restless Leg Syndrome (RLS) are also potentially related to stroke incidence. One study found that more PLMs are associated with White Matter Hyperintensities (WMHs), a blood vessel state that can precede stroke and other cardiovascular issues.

How to Lower the Risk for Stroke With Healthier Sleep

Research demonstrates a connection between sleep issues and strokes. There is strong evidence that having obstructive sleep apnea puts a person at a higher risk for stroke. There is also a clear correlation between sleep duration and stroke incidence, with people who sleep both too little and too much being at greater risk for stroke.

The relationships between stroke and other sleep problems aren’t as certain, though it appears that movement disorders such as Periodic Limb Movements of Sleep (PLMs) could put people at a greater risk of stroke.

Given all of the research on stroke and sleep, people wanting to lower their risk for stroke might consider improving their sleep quality. Anyone suspecting they have a sleep disorder of any kind should consider seeing a sleep specialist and possibly undergo a polysomnography, or sleep study.

Sleep studies and other testing can help doctors determine if a person would benefit from sleep medications or other sleep-related treatments.

Preventing and Treating Sleep Apnea

Sleep apnea is a disorder in which the sleeper has trouble breathing throughout the night. It increases a person’s risk of stroke and is often accompanied by snoring. Here are evidence-based methods for preventing obstructive sleep apnea:
Weight loss in people with obesity
Avoiding the back (supine) sleeping position
Cessation of cigarette smoking

Doctors generally treat sleep apnea by instructing patients to use a CPAP machine, which blows air into the nose and mouth throughout the night. Researchers suspect that CPAP machine use could potentially prevent Transient Ischemic Attacks (TIAs), which are essentially mini-strokes. Their research was preliminary, however, and they recommend larger, controlled studies to determine how well CPAP machines prevent TIAs.

A recent study reported that CPAP machines can reduce the recurrence of stroke and death in patients who have already had a stroke. Other studies show that CPAP machine use decreases blood pressure. This effect is even seen in patients who have high blood pressure that is resistant to treatment.

Since high blood pressure is a risk factor for stroke, CPAP machine use could potentially reduce stroke risk by lowering blood pressure, even in people who have never had a stroke before.

Sleeping for a Healthy Duration

What is considered a healthy amount of sleep depends on a person’s age. People who consistently have trouble sleeping within the healthy range for their age might consider seeing a sleep specialist and undergoing a sleep study. Healthy sleep durations for each age group are as follows:
Newborns: 14 – 17 hours
Infants: 12 – 15 hours
Toddlers: 11 – 14 hours
Preschoolers: 10 – 13 hours
School-Aged Children: 9 – 11 hours
Teenagers: 8 – 10 hours
Adults: 7 – 9 hours
Older Adults: 7 – 8 hours

Sleeping too much or too little is associated with an increased incidence of stroke. There are many different reasons a person might sleep too much or too little, and actions to improve sleep duration will vary depending on the individual. If there is an underlying physical illness or mood disorder affecting a person’s sleep, treating that is important.

If not, there are other actions people can take to help them sleep an ideal amount, such as:
Block out unwanted sound using earplugs or a white noise machine
Avoid drinking excess amounts of alcohol, particularly before bed
Avoid caffeine and other stimulants, particularly before bed
Go to bed and wake up at the same time every day to create a healthy circadian rhythm
Block out light using a sleep mask or blackout curtains
Adhere to a bedtime routine

Preventing and Treating Periodic Limb Movement Disorder
Research shows that Periodic Limb Movement Disorder (PLMD) could contribute to stroke risk. PLMD often overlaps with restless legs syndrome (RLS), narcolepsy, and sleep apnea. The following are ways to prevent and treat PLMD:
Test for other sleep disorders and treat them as necessary
Check medications’ side effects as limb movements can be a result of medications
Test for and treat any other underlying health issues that often accompany PLMD, such as anemia and diabetes
Exercise regularly

Final Thoughts

Sleep issues are one of the many risk factors for stroke, alongside other factors such as obesity, diabetes, cigarette smoking, high cholesterol, high blood pressure, high alcohol intake, high salt intake, physical inactivity, and more. Preventing strokes in individuals and the larger population likely requires a multipronged approach. One strategy for preventing stroke is improving sleep health.

Obstructive sleep apnea is the sleep disorder that has been studied the most in terms of its relationship to stroke. People who have obstructive sleep apnea are at a much higher risk for stroke than people who do not have the sleep disorder.

Central sleep apnea might also contribute to stroke risk since it increases cardiovascular problems. As of now, however, the link between central sleep apnea and stroke risk is not as clearly defined as the link between obstructive sleep apnea and stroke risk.

Other sleep issues beyond apnea appear to also affect a person’s stroke risk. These issues include an abnormal sleep duration, whether that is too much or too little sleep each night, and sleep movement disorders.

Although researchers cannot guarantee that improving sleep will prevent stroke, it is a healthy action worth taking. Early research suggests that CPAP use can reduce stroke risk in people with sleep apnea.

As more sleep-and-stroke-related research is conducted, more connections will likely be found. Pursuing healthy sleep is a worthwhile endeavor anyone, but may have additional benefits for people wanting to prevent stroke.

Additional Resources

If you’re interested in strokes and sleep, these articles might also be of interest to you:

Sleep-Related Breathing Disorders
Obstructive Sleep Apnea
Heart Disease and Sleep
Sleep Health
New Study Finds Sleep Apnea Treatment Can Reduce Hospital Readmissions