Sunday, February 28, 2021

Bill Jolley Member Story

 








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The following is from the discontinued StrokeNet Newsletter site.
Bill Jolley is a stroke survivor and was a Newsletter contributor at that time. I have permission from Lin Wisman, then editor of the newsletter, to repost these wonderful articles on this blog. 

Coordinated by Deb Theriault
Member Story Coordinator

Bill, who stroked in 2003, has spend several years recreating his life. Read about it!
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Member Story
by Bill Jolley



Dr. William (Mr. Bill) Jolley was a teacher by profession. Over his long career, he climbed the ladder of academia, assuming roles of increasing responsibility as a public school teacher, assistant principal, high school principal and, finally, director of a charter school program.

But, in 2003, Mr. Bill was involuntarily retired by a hemorrhagic stroke that hit the left side of his brain. With the help of his ex-wife, Gretchen, his family, friends and his beloved pet Chihuahua, Bill re-tooled his post-stroke world into a satisfying “life-part-2”.

Bill’s story begins in July, 2002. Back then, he was 44 years old and weighed 460 lbs., so he underwent gastric bypass surgery to kick-start a serious weight reduction program. One year later, Bill had additional surgery, to reduce a huge amount of loose skin around his midsection (a side-effect of weight loss). Three days after that, on July 24, 2003, Bill experienced his stroke.

Bill doesn’t remember the stroke or its aftermath. He was at Covenant Hospital, in Lubbock, Texas, for one week, then in rehab at Covenant Medical Center for three months. Afterwards, he was discharged to the care of Gretchen, who took him in for a year, until he was able to fend for himself. Bill maintains a close relationship with Gretchen since their divorce, saying she’s the best friend he’ll ever have. His family also encouraged him to get a companion pet, so Bill got a six-week-old Chihuahua puppy, named Sasha, who is still with him to this day. Bill’s support team was now complete.

Immediately post-stroke, Bill was paralyzed on the right, mentally incapacitated, and aphasic. But, once things settled and he entered rehabilitation, Bill mounted a massive recovery effort. Within three months, he could transfer himself from bed to the restroom without assistance, though he still used a wheelchair. This milestone was a real life changer, Bill’s greatest achievement since his stroke.

For two years, Bill continued out-patient therapy, three times a week, at Lubbock Neurological Center, then on-and-off treatment, for eight more years, at Lubbock’s South Plains Rehab center. Over that time, he explored many different remedies:

● Physical, speech, balance and life-skills therapies

● Botox® injections for spasticity on the right side

● Water therapy, which he still does, using special flotation devices

● Bioness® and similar devices, to stimulate function in his right arm and leg. Bill even worked as a “therapy model” for Bioness® Corp. and other companies, demonstrating therapeutic devices to patients and therapists

● Dragon® NaturallySpeaking speech software, which he still uses

● Computer games to boost analytical skills

A couple years post-stroke, Bill searched for things to make his life more useful. He decided being one-armed, with a paralyzed right hand, wasn’t going to slow him down.He took on every home repair project he could, using only his left side. Over time, he accumulated numerous custom-designed tools for a left-handed, one-armed individual. He ended up with so many he converted his garage into a workshop to store them all. Bill also owns a variety of landscaping equipment that he uses to maintain his lawn, as well as Gretchen’s and others’. He enjoys the yard work and feels it’s therapeutic.

Returning to work as a school administrator wasn’t an option, so Bill set his sights on other interests, and addressed goals that were put on the “backburner.” He completed his dissertation for a Doctorate of School Administration, which was postponed years before (though he knew he’d never use it), and rekindled a previous interest in photography. He especially enjoys capturing images of some very unusual subjects: tombstones.

Over the last few years, Bill’s been to approximately 100 small cemeteries throughout Oklahoma, Kansas, New Mexico, and Texas, where he’s tried to take photos of every tombstone, in every cemetery he’s visited. His latest excursion was to Texas County, Oklahoma, where he and Gretchen explored nearly 25 different cemeteries. Bill even wrote two books about some of the graveyards he’s surveyed.

Two years ago, Bill also began attending an aphasia support group run by Texas Tech University. They helped him regain some mental capacity, which he feels has been the most-overlooked part of his recovery program. The staff also helped Bill to significantly reduce the effects of pseudo-bulbar affect (PBA), where he will laugh for no reason, or at inappropriate times.

Looking back, Bill feels that his stroke changed who he is in some interesting ways. He was always very left-brained and analytical, but post-stroke he was rendered almost totally right-brained. That should have been an asset when he decided to take up painting, but Bill only produced three or so works, which he gave away to family, before putting his artistic aspirations aside.

However, despite his brain’s left hemisphere being impaired, Bill can still play chess, even though he’s been reduced from “rated player” to “novice.” He plays nearly every day (via the internet) with Dr. John Gribbin, the noted physicist who lives in England. To Bill, winning or losing is no longer important, but rather, it’s the interaction and fellowship that matter.

Eleven years removed from his stroke, Bill feels he’s still carving out a “new normal”. But, he’d like to give hope to other stroke survivors as they navigate their own long, difficult journeys. He’s had more than a decade to think about it, and to consolidate his experience into the following advice:

● Decide what’s truly important in your life, and follow that with as much passion as you can muster

● If you set your mind to it, there is nothing you cannot do, even if you’ve had a massive stroke

● You may not be able to do some things you used to love doing, but take full advantage of what you still can do

● Don’t be concerned about things you can’t control

● Tough things are sometimes difficult, and occasionally counterproductive, never give up on the challenge

● Above all else, enjoy whatever you do
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Copyright ©February 2015
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

Sunday, February 21, 2021

Born Again - My Year is Going as Planned

 








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The following is from the discontinued StrokeNet Newsletter site.
Moses Cherrington was a part of the Newsletter staff at that time. I have permission from Lin Wisman, then editor of the newsletter, to repost these wonderful articles on this blog. 
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Born Again
By Moses Cherrington

Born Again for 2015

My year is going as planned.
What follows is the strategy I have decided to adopt in order to:-

A. Rise above my frailty, i.e. the frustrations of coming to grips with my difficulties, whereby the stroke has influenced my once independent life.

B. I am learning to walk in this risen state regardless of the obstacles hindering my pathway.


In order for the reader to understand my approach I have devised 4 areas, and by concentrating on these areas, may what I have decided nourish and build you at whatever station of life you are currently at..

1. BIBLE STUDY

Since being brought up in the Armed Forces as a musician, and having been taught that to enter the armed forces, one must attend a Basic Training. It is here that I learned to stand as a soldier, to march as a soldier, salute as a soldier, wear the uniform as a soldier. This is summarised as having "bearing" as a soldier.

I have discovered the handbook of my purpose and being. I have discovered the "Through the Bible - a study of the Scriptures" written by Harlin Roper. "All Scripture is given by inspiration of God that the man/woman of God may be complete and perfectly fitted for Christian work" 2 Tim 3:16-17

I have found my frustrations getting less and less even though I still stub my foot: the computer still runs slower, and I do not have work. Before these frustrations would set me back as I dwelled upon them, but now I am becoming more and more bearable.

I am currently studying through the Book of Romans where I am being introduced to the Holy Spirit and His power within me.

2. WORK

I have not been able to work since I have had my stroke four years ago, due to the above frustrations which culminate in my stroke side influencing my daily life. When I get tired my mouth droops and my left side swells and fatigue, don't talk to me about fatigue.... I still get horribly tired which affects me for days after I have done an activity. For example, we have a neighbourly web site here where I can use this App to communicate to my neighbours to ask for a service or to borrow a piece of equipment.

I sought and was offered a water blaster. I learned how to use it. It is very addictive. I have cleaned the outside of the house, I have cleaned all the walls that encircle the house, and last but not least, I have cleaned our cement driveway. To do this I used an electric water blaster so I had to make sure we had the right length of hose at the right water pressure. I learned to be meticulous in where I placed the machine strategically. The hose would disconnect itself from the machine if I pulled too hard, yes I grew in the art of overcoming frustration through persevering.

As a result, my children bought a water blaster for me for Christmas, and I have just completed water blasting a community centre and kindergarten. That took four days at 2-3 hours per day.

Yes I was tired but I didn't have the usual symptoms of fatigue. Of course I rested periodically during the water blasting. My greatest joy was seeing what was dirty and grubby becoming pristine and clean. It is like the soul being "born again".

3. HOME

I have three children (12, 15, 17) at home and they have expressed a desire to grow into the Image of Christ. I have been undertaking a Bible Study at 6am each morning around the dining table with weekends off, whereby using the Bible Studies by Harlin Roper we are all learning how to imitate CHRIST by knowing Him. I have noticed especially with my youngest one that she is developing an air of nobility every day.
If I can quote from the preface in Jim Berg's book "Changed into His Image" from a letter he wrote to his daughter:

"I have told you before that your mother and I will probably not be able to pass on to you any kind of earthly inheritance. If we can pass on to you a passion for God, however, we will have given you something more valuable than silver, gold, or rubies and more satisfying than anything a mortal can experience...Our prayer is that our daughters may be as corner stones, polished as for a palace (Psalm 144:12) page ix
Love dad.

That has inspired me to be the best for our children

4. RELATIONSHIPS

I have found that with my Armed Forces training, I would run the home like an army unit. I am learning that I must temper my commands with grace and goodness. The concept of a spiritual greenhouse has been communicated to me, so I now see my role and responsibility as a gardener.

I do not possess those skills, but as I daily dwell upon Scripture and apply its principles at home where areas of no compromise are developing. For example if a musician says they can play, but I hear no practising, I stipulate practise using little spiritual lessons to convey the art of perseverance. My desire is to develop that attribute within an individual.
I have also learned to listen to my wife. By listen, I mean to actually listen to what she has to say before I open my mouth. I have developed the "bit" technique; this is where I use my teeth to clench the tongue between the upper and lower teeth until my wife has shared with me. That is a discipline I am practising every day and she is far happier in sharing with me the issues of life.

In Summary,

Apart from being very, very hot here in Hamilton (averaging 80 degrees fahrenheit,) the beginning to the year has been one of discovery through being born again. Discarding the old and putting on the new. I am discovering the thrill of not being frustrated at those things that once frustrated me. In addition I am learning to hold my tongue and to listen. I am learning that my household is a spiritual garden and I must tend the garden daily.

I am learning to think through work activities that require forward planning, and when I use it I squeal with delight in having mastered a thinking process.
May you find some answers to some issues you may currently facing and remember there is someone worse off than we are.

I was invited to a birthday party to a lady who had a stroke 10 years ago. She has an electric wheelchair and was married 6 months ago. Her husband has had his legs amputated due to diabetes. It was good to see them to uplift them.
We are here to nurture and serve...
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Copyright ©February 2015
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.














Sunday, February 14, 2021

Every Little Bit Helps

 








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The following is from the discontinued StrokeNet Newsletter site.
Jim Sinclair was a part of the Newsletter staff at that time. I have permission from Lin Wisman, then editor of the newsletter, to repost these wonderful articles on this blog. 

The contents of this blog article do not constitute advice and should not be relied upon in making or refraining from making, any decision. All material contained in this article is provided without any or warranty of any kind. You use the material in this article at your own discretion. Please consult your doctor before making any decisions based on the content of this article.
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Dancing with Stroke
By Jim Sinclair

Every Little Bit Helps


Last September during a presentation that I made to third year medical students one of the students asked if I could think of something a doctor had done that had a dramatic positive effect on my recovery or something that I wish they had not done as it was detrimental to my recovery. Having never previously given any thought to that I was hard pressed to immediately think of some examples.


My simple response at that time was that by far the most important positive action taken by any medical professional was the repetitive reassurances that a full recovery was possible made by my first neurologist during the first month following my strokes. I emphasized that having Dr Bill Martin ,from the very beginning, instill within me a confident belief that a full recovery was possible provided the motivation needed to allow me to do what needed to be done.


Having now had some time to contemplate that question I have come to realize that my response at that time was much too simplistic. I realized the young lady had asked the question in hopes of gaining a tool which she could use at some point in her career.


A far better response at the time would have been to take advantage of the opportunity to impress upon this group of students that recovery is not the result of one or two single actions and no one magic bullet; it is the cumulative result of a great many very small actions over a lengthy period of time with any single action not necessarily being of greater importance than any other single action. Since recovery following stroke is a process of small steps taken slowly, each and every action that contributes to a step forward is as important as each and every other action. Every little bit is significant.

At that time the only negative that came to mind occurred five years post stroke. I consulted with a neurologist because of some confusion and disorientation that I would occasionally experience. He suggested that what might work was to take respiridone, an antipsychotic medication that was at times effective for other off label uses. I agreed to try this medication.

Unfortunately at about that same time my antidepressant stopped being effective as did my sleep assist medication to which I had become addicted. Adding respiridone at this point only made me feel worse. I did however, caution the students that this had no long term detrimental effect on my recovery and was only a small bump in the road to recovery; and that they should never hesitate in being creative with what they believe might be of value in our recovery.

While I would like to think that my very successful recovery has been primarily the result of my own hard work supported by the assistance of many peers, I am fully aware that these were secondary to the ability of a great many health care professionals to each do their small part in providing what was necessary to have my progress inch forward slowly.

It was the aggregate of actions that was significant with each and every act contributing in their own way to my journey of recovery. I feel that the act of a Health Care Assistant rolling me over during the night when I was unable to do so was as necessary to my recovery as was the act of my neurologist and my cardiologist meeting together to determine that my strokes were enabled by a hole in my heart(a PFO).

Since every journey of recovery of every stroke survivor is as unique to each survivor as is their own personal makeup and their particular stroke circumstances the relative importance of the specific actions of health care professionals will vary greatly from survivor to survivor. I firmly believe that the goal of recovery is to attain a quality of life which is meaningful and satisfying for each survivor in whatever terms defined by each survivor.

I believe that everything we encounter along our journey of recovery is a contributing factor in that recovery. It is often difficult for us to understand how certain negative experiences can contribute to our recovery. We must remain confident that even every adversity has its purpose and maintain our faith that all we encounter helps us move towards that meaningful quality of life we seek. Every little bit helps.
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Copyright ©February 2015
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.






Tuesday, February 9, 2021

Happy Heart Month








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The following is from the discontinued StrokeNet Newsletter site.
Claudia R. Warner was a part of the Newsletter staff at that time. I have permission from Lin Wisman, then editor of the newsletter, to repost these wonderful articles on this blog. 
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The Juggling Caregiver
By Claudia R Warner


Happy Heart Month

Is is SPRING, yet? It could happen—some February months have been warm. So here’s hoping!

January was cold, cold, cold. We had terrific wind chills that lasted for days. I’m a firm believer in getting outdoors every day, but that month tested my determination. Getting outdoors makes me feel good—even on cloudy days.

Our dog, Chloe loves to be outdoors. I got her a new coat which, after I resewed part of it seems to be warm for her. She, like me, gets discontented and antsy if she doesn’t get out for a walk, run, or playtime every day Wes doesn’t need a grouchy wife, much less an unhappy dog, so out we went in wind chills that were in the minus readings of teens and twenties. We spent 15 minutes at a time and were on the move constantly. Needless to say, we both were ready to come inside after that short time. Several outings like this per day helped a lot and ensured harmony in the household.

February 14 is Valentine’s Day. It is a somewhat difficult time for many caregivers. Two out of three caregivers are female and this holiday is really geared toward women. We are used to getting flowers, gifts, dinner out, chocolate, etc. from our significant other on this day. Now that has changed for us. So, it is payback time! Now it is our turn to pamper our partners.

How about flowers for the dining area? It doesn’t have to be a large bouquet—a single red rose is a nice touch. Would your partner enjoy an outing? Movies are fun, as is a lunch outing. We enjoy going to coffee shops so we’ll do that and have a special dessert with the coffee. Or you could fix a favorite meal. Movie night is always a winner. Pop some popcorn and watch his favorite movies. They can be rented or borrowed from your public library. You could go shopping. Wes loves going to bookstores, getting a latte and browsing magazines. When the latte is finished, it is time to select the magazines he wants and then we head to one of the book sections. Usually he finds items to purchase, but if not, the browsing and coffee are fun.

Valentine’s Day doesn’t have to be expensive—it is the thoughtfulness you give that makes it a special day. A heart-shaped cake decorated with heart candies is an easy thing to do. Or use M&Ms to spell a message. A heart-shaped balloon will last several days and is a great way to brighten a room. Invite a couple of your partner’s friends to come for a visit. You could even share that cake with them!

Now, as a caregiver, you must think of something for you. What would you enjoy “gifting” yourself? A book? Chocolates? Time to yourself—with NO interruptions? A walk? Something good to eat? I’m thinking of a hot fudge sundae with pecans. YUM. You know what you want/need so just do it. It will make you feel good and you deserve it!
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All you need is love. But a little chocolate now and then doesn't hurt.
~Charles M. Schulz
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Copyright @February 2015
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.














Monday, February 1, 2021

Are You Discouraged and Concerned for the Future








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Street & Steeple for January 29, 2021

By Phil Bell, retired, pastor, University Baptist Church

“God Is Help In Times Of Trouble”

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Are you discouraged and concerned for the future at how divided our nation has become, scared of contracting the coronavirus, or depressed about some personal situation in which you find yourself?

You might even have been praying about it. Too often we pray to God, telling Him what to do and how to do it! We think our nation is broken and needs healing! We may even be praying for it, telling God just how it needs to be done. 

We may well be worried that, despite our precautions, Covid 19 will find us. How many times have you asked God to make someone’s chemotherapy effective to heal him or her of cancer? It is certainly proper to ask God for healing. He is the great physician, to be sure, but He just may surprise you how He does it! 

One of my favorite contemporary Christian songs is Scott Krippayne’s “God Has A Wild Imagination.” The lyrics include “As you approach a deep abyss I can’t tell you the outcome, but I promise you this, God has a wild imagination at work in ordinary lives. Come and see. Come and be surprised!” 

Is this song scriptural? Yes, I believe it is. Consider Exodus 15:11, written by Moses, who knew God, arguably, better than any other mortal. We’re told that he and God sat and talked face to face. In this Genesis Moses writes, who is like You among the gods, O Lord? Who is likeYou, majestic in holiness, awesome in praises, working wonders?” “working wonders” is the same as “has a wild imagination.” 

Now I’d like to give you two examples of what I’m talking about. My pastor’sgrandson, at about the age of six months, in a scheduled checkup by his pediatrician, it was noted that his head was larger than it should have been in comparison with the rest of his body. The child’sparents and grandparents were greatly concerned, naturally! The doctor ordered a sonogram of the boy’s head. The results did nothing to calm anyone’s anxiety. They were told that he had a build up of fluid in his brain that might require his skull being sawed into in order to install a shunt for draining the fluid. All the boy’s family prayed for him, as did our entire church, and, literally, every pastor in MACMA ( Macomb Area Ministerial Association ). 

An appointment with a neurological surgeon was scheduled. When the surgeon read the sonogram he told them he disagreed with the diagnosis. “Yes,” he said, “there is an accumulation of fluid, however, it is not in the brain, but rather between the brain and the
skull, does not pose a health risk, and most certainly doesn’t call for surgery! 

He did have another sonogram performed which confirmed his opinion. I’m quite sure that not any one of us praying had prayed for that exact outcome, a missed diagnosis, but, you see, God has a wild imagination! 

My other example involves my having a massive stroke at the age of sixty while serving as pastor of University Baptist Church. As part of my treatment a stay in Heartland Healthcare was necessary. My wife, Nancy, and I sat in my room, one day, discussing our financial situation. She, retired, had a very nice monthly payment from TRS, I received a much smaller payment from a retirement annuity from my work before being called into the ministry in addition to a couple other sources of income, but my compensation from University Baptist, easily, made up the largest share of our income. Of course that would end until I was able to return as their pastor, if ever! We thought we could get along for awhile especially since money would be saved by my not eating at home for quite awhile, in fact, not eating anywhere, until my speech therapist had restored my ability to swallow, but money would be tight. Nancy had made application for me to receive social security disability payments which had been approved but not yet started. 

Out of the blue, the church deacon chair walked into my room. He was there to tell us that the church had voted, in a specially called business meeting, to continue paying me my salary until the disability payments began, considering me on medical leave. 

Before becoming the pastor, I had chaired the committee which rewrote our Constitution and Bylaws, so, I knew that nowhere in the bylaws did the term, “medical leave “ appear! Those wonderful brothers and sisters in Christ had created the term just for my situation! You may think that rather fantastic, but, you see, God has a wild imagination! 

Of course, there are any number of ways God could have taken care of both situations. That’s precisely my point, God delights in doing wonders for our good and surprising us in the process! How do I know that? Psalm 46 tells me so! “God is our refuge and strength, a very present help in trouble. Therefore we will not fear, though the earth should change and the mountains slip into the heart of the sea.” I’m guessing, whatever your problem, it is no worse than that, should it happen. 

The verse simply means that God is interested in our problems and not one of them is too big for him, nor reason for us to fear! If you’re upset and discouraged about any matter, pray about it and don’t be too surprised how it is resolved, because God does indeed have a wild imagination! We, who are Jesus followers should be the most positive, hopeful people from the Pacific to the Atlantic and from Canada to the Rio Grande! 

I say that because Jesus did! In Luke 18:1 Jesus is preaching to the people. Luke records, “Now He was telling them a parable to show that at all times they ought to pray and not lose heart.” O.K. He didn’t mention the Atlantic, Pacific, Canada, nor Rio Grande, but cut me some slack ,He might well have mentioned the Red Sea, Mediterranean, Samaria, and the Jordan, but Luke and the Holy Spirit felt no need to include it.

Again I say, be praying, encouraged and anticipate surprises! God is our help in any kind of trouble! 

- Phil Bell, retired pastor, University Baptist Church

Monday, January 25, 2021

Keep Engaged with Life








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Keep Engaged with Life
By David Wasielewski

A Strategy for Survivors and Caregivers

The stroke survivor who returns home after rehab is often met with many friends, relatives and others who want to help in any way they can. Visits tend to be frequent at first, but as the novelty of being a stroke survivor wears off, that survivor is challenged to find a new place in the home and community. The survivor is faced with an important choice. Will the survivor allow others to define their new place or do they play an active role in redefining themselves?

Some survivors allow their position to be defined for them. Caregivers and family members take up all tasks for the survivor with the best intention of helping. This can inadvertently help to squash any desire or motivation for the survivor to assume those tasks, and define their new role. Many survivors are unable to return to their job after a stroke. As we know many of us rely on our jobs and responsibilities to define ourselves.

“What are you doing these days?” is a typical conversation starter for the survivor, as it is for most anyone. With all of the help offered it becomes very easy for the survivor to come to a place where the answer is “Nothing.”, leaving little to discuss. Not having a job, task or responsibilities can quickly result in a loss of identity and purpose, a perfect formula for depression.

This can be avoided in a number of ways. The survivor may, on their own, begin to take on certain tasks. It may be difficult at first but the family and caregivers need to give the survivor the chance to take on a new task. If successful, that task can become the responsibility of the survivor. As a therapy exercise the survivor might practice loading the dishwasher after meals.

This is a good exercise in cognitive organization and planning. If successful, the task can become the survivor’s daily responsibility, giving him a sense of purpose in the family. The family can carefully look for chores around the house that the survivor can take on and negotiate that responsibility to the survivor. This gradually allows the survivor to develop an answer to the question “What do you do?” The survivor take’s on a new identity and with it, a sense of purpose.

Waking up each day with a series of tasks, no matter how big or small engages the survivor with the family and helps avoid depression. Knowing that the family depends on him or her for a certain task each day builds self-worth and a sense of accomplishment in the survivor. Responsibility and planning for the future takes a survivor’s focus off of himself and builds meaning in his life.

The survivor gradually replaces “Nothing” with “I fed the dog, I did laundry, I did the dishes’. This becomes a conversation starter rather than a killer. “Congratulations, that must have been a real challenge for you.” As the survivor regains confidence she can begin to plan these activities and restructure a life in this new circumstance.

As the process continues the survivor should be encouraged to take bigger tasks that require more engagement and commitment. My wife, in her research on stroke and caregiving came across the bulletin for a writer in this newsletter and encouraged me to apply. I could add writer to the list of things I do. I need to spend time each month determining a topic and content for my part of the newsletter. Over time a survivor’s commitments can grow according to their specific abilities.

In the best cases the survivor moves outside the home taking on community volunteer activities. One’s calendar begins to fill with appointments and projects appropriate to the survivor’s skills. I have ventured out to join my town’s Green Energy committee, organizing various community projects. Another member I know is involved in planning and presenting Aphasia awareness programs in his community. Aphasic members of my support group manage a website for an adult education group and participate in art classes.

Having a sense of purpose and responsibility encourages the survivor to actively participate in home and community life. It gives a sense of meaning and hope to the survivor, the family and community involved with that individual. These strategies need to be customized for each survivor but the basics are the same.

Vicktor Frankl writes of how responsibility and purpose create meaning in one’s life. His book “Man’s Search for Meaning” details his experience as a holocaust survivor and how that experience shaped his philosophy and the lessons on spiritual survival that influenced this article.





Copyright @February 2015
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

Sunday, January 10, 2021

Gopi Tejwani Stroke-insights

 

www.strokecamp.org



http://www.unitedstrokealliance.org/



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The following are insights Gopi Tejwani posted on our United Stroke Alliance Community Facebook page. Gopi is a stroke survivor, as you will see in his article, so he is writing from personal experiences. He has given me permission to post his insights on our blog.
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What stroke-insights did you have from your stroke?
by Gopi Tejwani

Happy new year to all of you!

    I suffered from a hemorrhagic stroke, at the age of 62, 12- years back. An AVM in my brain stem ruptured. I was in a coma for two weeks, seven weeks in the hospital, three months in a wheelchair, six months on sick leave, and three years in professional therapy. With the grace of God, family, and friends' support, rehabilitation, and hard work for years, I survived. I have a normal, functional life though at a slower pace. My right side of the body is still week. The right-hand does minimal work. I drive a modified car with the left hand and foot (Gopi Tejwani, 01-01-2021).

The following are my stroke insights of the last 12 years.

1. Never compare two strokes. Two strokes are never similar. They differ in brain region affected, duration of damage involved, whether the damage is due to ischemia or hemorrhage, and the organs normally controlled by stroke-affected brain region. Some stroke survivors recover in days, some in years!

2. Most of the stroke survivors become angry or emotional. It could be because they are suddenly transformed from vibrant and energetic individuals to dependent and hemiplegic persons, dependent on others.

3. Stroke comes as the shock of life. It is so sudden in onset; I had a few seconds before I went into a coma. When you realize what happened; you start to ask, why me? Instead of asking that question, work hard on your recovery.

4. There are no medications for a stroke per se. You have to prevent or treat an underlying disease like hypertension, diabetes, or stress. Or treat the damage created by strokes such as pain, aphasia, dysphasia, or weakness of the affected body parts through rehabilitation.

5. It is a relearning process. A stroke survivor may have to learn basic skills such as walking, talking, comprehension, writing or driving, etc all over again. Just like we show patience when our kids are learning these skills; a caretaker of stroke survivors has to have mammoth patience. It is much more difficult to teach these skills to adults.

6. Rehabilitation through various therapies (cognitive, occupational & physical) works. If you start earlier, it is better for you. Consistent efforts result in a better recovery. You can aid your recovery by working zealously and hard.

7. AFOs, braces, and canes may become part of your body. It is a good idea to use them to keep your body stable. I still use my right foot and leg AFO and a cane, 12 years after my stroke. People tell me that I look graceful with my cane.

8. Your house may need modifications. You may need a temporary bathroom in some room on the ground floor (ask Lowes departmental store). You may have to shift your bedroom from upstairs to the ground floor. You may need a ramp in front of the house.

9. Days of impulsive behavior and quick reaction are gone. Always think before, and take a deep breath before you do anything. Have some patience.

Before you leave your bed, collect your cognitive faculties and beware of your surroundings

    10. You may lose your sleep. After the stroke, if I can sleep six hours continuously, it is a blessing. Most of the stroke survivors do not work as vigorously as they used to do before the stroke. It may be necessary for them to daily physical exercise to sleep soundly. Relearn some sleep techniques.

    11. You may need fiber intake. Stroke does affect the smooth muscles in our intestine. They may not work as vigorously as before. You may suffer from constipation. Increase your fiber intake by eating more fruits and vegetables, whole grains, prunes, semi-ripe, or ripe pears.

    12. Recovery from a stroke is safer with help. The help from family and friends is invaluable. Your faith in the almighty may help. Your hard work and constant efforts in therapy will expedite your recovery. More physical activity you can do on your own, it is better. But if it is safer to do your physical with help from others, please do it.


    13. Learn to take public transportation meant for disabled people. I was not aware of bus services such as the Central Ohio Transit Authority (COTA) Mainstream bus service for disabled people, and instead relied on help from friends, and that may be not necessary.
Your happiness is in your hands. Always compare yourself to the people who are in more precarious health than yourself. Always have positive thoughts in life. Learn to see the cup as half-full than half-empty.

    14. Never blame yourself for a stroke. Never think of why me? Why did I suffer from a stroke? There is no answer to that question. Whatever God gives you in life, take it, and try your best to deal with new calamities. Don’t worry about things that are beyond your control. Show your concerns about things that you can control.


    15. Don’t change your interactions with your friends. Behave with your friends in the same manner, as much as you can, as you used to do with them before the stroke. If a friend doesn’t say hello to you; you take a high road and say hello to them.

    16. Keep your hobbies. I enjoy international travel. I visited about twenty countries after the stroke. I did not mind renting a wheelchair when it was necessary for me for safety reasons. Or abandon some visit because other people in my tour group were getting inconvenienced, because of my slower pace.

Finally, you have to accept your new body after the stroke. 

After the stroke, you have to accept your body. Your body may be hemiplegic, slow in moving, and thinking. You can not be as vibrant and energetic as before. You have to have patience. Work and pray hard. Time is a healer. Measure your recovery not in days and weeks but months and years. Every day you progress and recover but the recovery may be noticeable after a long time of doing efforts. You will have a normal functional life though at a slower pace.

Monday, December 28, 2020

3-year-old Suffers Stroke


www.strokecamp.org




http://www.unitedstrokealliance.org/



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The following is from the Central Illinois Proud website:

 www.centralillinoisproud.com/news/

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3-year-old suffers stroke from COVID-19; doctors, family call recovery best Christmas present ever

by: Emily Manley
www.centralillinoisproud.com/news/

Posted: Dec 27, 2020 / 05:26 PM CST / Updated: Dec 27, 2020 / 05:26 PM CST

COLUMBIA, Mo. (KTVI) — A family and a team of doctors at the University of Missouri Health Care are calling the recovery of a 3-year-old boy the best Christmas present ever after the boy had COVID-19, which caused a stroke.

“We thought we were going to lose him for sure,” said Tim Parris, father of Colt Parris. “I don’t care how tough you are; you will cry. You can’t help it when it’s your 3-year-old laying there.”

It’s something no parent ever wants to go through.

“His behavior was quite different and the pain that your child is in, I can’t even put into words,” said Sara Parris, Colt’s mother. “You couldn’t even touch him and not know that it wasn’t hurting him.”

For more than a week, Tim and Sara have been inside MU Women’s and Children’s Hospital in Columbia as their 3-year-old son lies in a hospital bed.

“Just trying to explain to him why I’m holding him down,” Tim said. “Nurses are trying to stick needles in his feet. The pain that he has. You couldn’t touch him for several days because he was so swollen, and his body just hurt everywhere.”

Last week, Colt stopped eating and drinking. His mom took him to a local clinic near their hometown of Salisbury, Missouri, where he tested negative for COVID. The clinic recommended the family go to the hospital.

“They did get a test back by the time we were admitted and that’s when we got the positive antibody to know that it was COVID,” Sara said.

Hours later, Sara noticed something different about her son.

“I noticed Wednesday his speech was a little off, but I honestly thought he’s in so much pain and he’s so tired,” Sara said.

Then she started to notice he lost the ability to move his right arm and leg when she tried to hand him his stuffed animal.

“So, I went to hand him his Boo and I noticed that he didn’t use his dominate arm to grab it,” Sara said. “He reached over to grab his bunny and then again, I knew something else wasn’t right.”

After running test, doctors told the family Colt had a blockage in his brain.

“The result came back and I looked at it and it was a clear stroke,” said MU Health Care Pediatric Neurologist Dr. Paul Carney, who diagnosed the little boy. “So, there was a lack of blood supply to the left side of the brain.”

Carney said he’s been practicing for 20 years and has never seen anything like this.

“What was different here was a child and as I mention, there’s really no other case like this,” Carney said. “If this had been anybody over the age of 40 or 60, they would have probably had a very different outcome.”

Later Wednesday night, MU Healthcare Neurologist Dr. Camilo Gomez used a treatment called a thrombectomy to remove the colt from Colt’s brain.

“The COVID diagnosis is important because we think the reason why this patient with COVID, including the child, have strokes and a variety of other problems is that they have propensity to form clots,” Gomez said.

Once the procedure was over, Sara said she immediately noticed a difference in her son.

“He came out of the sedation period and his speech was there, his words were there,” Sara said. “It wasn’t clear, but it was more than Wednesday morning.

Carney said through his research, he’s found one other case like Colt’s, but the child didn’t survive.

“I would say that if you notice your child has COVID and having problems walking or talking, don’t just chalk it up, ‘oh they just have a fever,'” Carney said. “It could be a nervous system problem.”

Colt’s parents hope their story will make other aware of COVID-19.

“Masks and stuff like that, people need to wear them,” Tim said. “It’s important. If you don’t’ want your children going through this, people need to be more aware.”

Carney wants people to know this can happen to anyone.

“When children do get it, do get COVID, it seems like they have more system or systemic problems involving their heart, in particular, which can be life long,” Carney said. “It can scar the heart.”

Now the goofy, silly and energetic three-year-old boy is on the road to recovery.

“Like you said, we already had our Christmas,” Sara said. “It’s sitting on the bed there in the room. I don’t think we could have asked fr anything more than that.”

Sara and Tim both said they don’t know where Colt contracted the virus. Earlier this year, the Parris’ started homeschooling their children to avoid any outside contact.

“In our situation, we minimized public interaction to our highest extent,” Sara said. “We don’t go out and so, in our head, it can’t be COVID because we’re not around anyone.”

Doctors say Colt is going to make a full recovery with the hopes of him going home to his three older siblings next week. He will be in rehab for his ability to move his right leg, arm, and for his speech.

The Parris said they can’t thank the team at MU Women’s and Children’s hospital enough. Their son might not be alive today without them.

“That team is the most amazing, phenomenal people,” Sara said.

Carney said Colt is not at risk for any more strokes because of this and he will be on a blood thinner or aspirin for the next six months.
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Copyright 2020 Nexstar Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

Sunday, December 20, 2020

Stroke and Young Children

 

www.strokecamp.org



http://www.unitedstrokealliance.org/



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The following is an article originally posted on the now discontinued website called StrokeNet. They published a monthly newsletter. Their articles are still very useful today. With the permission of their then editor, Lin Wisman, I am able to repost them on my site.

The following article was written and published on the StrokeNet Newsletter web site by David Wasielewski. David is a stroke survivor and was a member of the StrokeNet staff.
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by David Wasielewski

As we all know strokes can happen at any age. Young and middle age adults who survive stroke often have families with young children who need to deal with the challenges that a stroke brings to the family life. This begins with the initial trauma and crisis associated with the event and continues with the challenges of changing home life and relationships that become part of the stroke survivor’s life.

Explaining what is happening to a child presents a particular challenge. Sudden changes in routine, trips to the hospital and conversations with strange doctors about illness and strokes are frightening for a child. The child’s sensitivities and ability to understand what has happened and what might happen in the crisis need to be carefully dealt with.

It is probably a time where a skilled professional should be consulted but is also a time when those folks are not usually sought out. The unprepared adults are often left to their own devices to deal with the situation as best as they can. How does an adult family member reframe a stroke in ways that the child might understand? How do we help a child cope with the crisis even when we adults are often unable to hold it together as the situation unfolds?

This is not something we, as parents typically prepare for. The effects of stroke are emotional, social and economic and need to be addressed in terms a child can understand. One paper describes stroke as a family illness as all aspects of family life are affected by the short and long term changes it brings. A much as the family might try to shield a child from the trauma that child will eventually need to deal with the reality that stroke brings to the family routine, both near and long term.

Questions about how best to explain stroke, and its aftermath, to children?

Some suggestions follow:

1. Explain what a stroke is in language that is not misleading but in words that the child can comprehend (eg, a blood vessel taking blood to the brain wasn’t healthy and it bled or burst which meant the brain didn’t get enough blood for a while)

2. Explain the consequences – the brain controls the way we move, think and talk, so after a stroke people often move, think and talk differently

3. Even when the person who has had a stroke comes home from hospital they might have to see the doctor, or other people who can help them, a lot and they may not be able to do the same things they did before the stroke

4. Fatigue post-stroke is a major issue for many stroke survivors – make sure the child knows that the family member might need a lot of rest to get better

5. It can take a long time for someone to get better after a stroke

The UK stroke association provides a Guide for explaining stroke to a 9 year old. It breaks the details into words and concepts the child can understand.

Families with young children might consider speaking with a professional psychologist about the effects a stroke have on children and the family dynamic. Psychologists are often readily available at the hospital, especially in rehab units. It is important to consider the child’s unique situation and needs even as the adults in the family struggle themselves to adjust to the changes that strokes bring to their lives.

Copyright @January 2015
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

Sunday, December 13, 2020

Keeping on Track


www.strokecamp.org



http://www.unitedstrokealliance.org/



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The following is an article originally posted on the now discontinued website called StrokeNet. They published a monthly newsletter. Their articles are still very useful today. With the permission of their then editor, Lin Wisman, I am able to repost them on my site.

Rachel Stolz, the author of this article, was a member of the StrokeNet staff.

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Keeping on Track
By Rachel Stolz



I went to donate blood for the first time post stroke about a month ago. I thought for certain my iron levels would be low due to the fact I’m a vegetarian (have been since I was a teenager). Turns out, my iron levels were above average. I was happy to hear that and started to think about what changes I’ve been making nutritionally since having a stroke that raised my levels up to where they should be.

This article will focus on the importance of nutrition for maintaining mental and physical health post stroke. (Side note: When I went to donate blood I also registered to be a bone marrow donor. I felt like I would love to donate if I were ever a match for someone in need. I submitted the paperwork and found out a short time later I was denied due to having a stroke. It never crossed my mind that I would be denied for such a thing. Banned for life. Bummer!)

I’ve written before about the importance of exercise for maintaining a positive mental outlook and also for the physical benefits. I have always been an active person…. Walking my dogs, swimming, cardio, lifting weights, however, I have never been the healthiest eater. Part of that is due to the fact I exercised a lot and could eat more or less what I wanted. That included a LOT of breads, pastas, and other carbs. It’s easy to carb load when you’re a vegetarian!

Everything changed when I had my aneurysm surgery and subsequent strokes. I still maintained some level of exercise, but due to my depressed state of mind and lack of energy, I was lying around more than ever. This led to me consuming more food than ever and I tended to snack throughout the day.

I think it was a comfort and I was becoming emotionally dependent on food. I easily gained 35 pounds over the course of a year and I kept that weight on for much longer. I threw out my scale because it was a reminder of how much I’d gained. No matter how miserable I felt about the weight gain, I couldn’t seem to shake the bad eating habits I’d developed.

Two things helped me get out of my slump and back on track (almost 3 years later). The first thing I did was go and see a GI doctor because I was having some upper digestive issues and acid reflux. The doctor told me without hesitation that I needed to lose some weight; that even 10 pounds would make a difference and probably clear up a lot of my GI issues and reflux.

The second thing that helped was watching a good friend of mine who was morbidly obese start going to the gym and counting calories. She dropped 60 pounds within 6 months. I saw how motivated she was and decided to follow her lead. I began tracking my calories in a phone app to keep me honest.

It was very difficult at first to stay within my allotted calories, but I figured as long as I was getting close, it was still less than what I had been consuming. As I gradually got used to snacking less and making healthier choices, it did become a bit easier and I was able to keep my calorie consumption within a more normal range.

The next step was buying a scale. This was scary to me because I had actively avoided the scale (besides doctor’s visits) for quite some time. I was shocked the first time I stepped on the scale but I resolved to let it be a motivator and not view the number in a negative light.

I had contact with my friend on a daily basis via text about what steps we were taking to become healthier and just checking in to help keep us on track. I started eating less carbs and more vegetables and protein. Veggie burgers have really come a long way! Daily multivitamins along with some natural additions like apple cider vinegar and healthy protein bars really helped me feel physically better. Along with moderate workouts, I finally saw the scale begin to move in the right direction. Although you could see the physical changes I was making, the emotional changes were even greater.

I began feeling like my old self again, not shying away from photos being taken, and just all around feeling more comfortable in my own skin. My confidence levels were bouncing back and my overall outlook brightened. I believe the combination of healthier eating coupled with losing the excess pounds did wonders for my mental health and self-esteem.

I have now lost the 35 pounds I gained after falling ill and am back at my 2011 pre-stroke weight. It has been a challenge to lose that weight, but the more you focus on your goals the easier it becomes. My motivation is not just the physical aspect of weight loss, but wanting to be as healthy as I can to prevent any future health issues, to include having another stroke. Some days are still a struggle to eat mindfully and healthfully and treating yourself occasionally is okay. On those difficult days, I remind myself how lucky I am to have the chance to turn my health around and I grab my apple with a smile on my face.
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Rachel had surgery for a brain aneurysm in 2011 when she was 33 years old. After surgery, she suffered strokes throughout the right hemisphere of her brain to include the frontal lobe, temporal lobe, and parietal lobe. Rachel is fully recovered and runs her own investigations and security company. She and her husband also own a public safety communications business and reside in Oklahoma City.

Copyright ©November 2015
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.



Sunday, December 6, 2020

Surviving and Thriving Through the Holidays

 

www.strokecamp.org



http://www.unitedstrokealliance.org/


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The following is an article originally posted on the now discontinued website called StrokeNet. They published a monthly newsletter. Their articles are still very useful today. With the permission of their then editor, Lin Wisman, I am able to repost them on my site. 

Lin Mouat, the author, contributed this article to the StrokeNet Newsletter.
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Surviving and Thriving Through the Holidays
By Lin Mouat


I love everything about preparing for the holidays - from card sending to goody cooking, wrapping gifts, and my special favorite, decorating our home and tree. I'm just a kid when it comes to the magic of lights displays, community festivities and holiday music.

However, three years ago, two strokes changed the way I experience the holidays. In the beginning I honestly believed I could still do all of the things I used to do for the season but I soon found out that I am not the person I used to be.

That first post-stroke holiday was very bitter-sweet. Nothing was the same and many of the traditions I had so treasured fell by the wayside. But at least I was alive. I can't pretend that these changes were easy. Depression seemed to meet me at every turn and it took all of my strength to not give in to it completely.

Adapting what works for each stroke survivor is unique but the following are a few helpful things I've learned over the past three years.

• Keep expectations realistic. Make a plan (daily, weekly, etc) that fits your energy and prioritize. What I can get done on paper greatly exceeds the physical reality. Keeping your expectations is vital.

• Schedule tasks for the period of time when you function best. Since I am not a morning person but I function best in the morning, it takes careful planning in order to honor these conflicting truths.

• Simplify. For example, for holiday entertaining you can give each guest one or more items to bring. Many large grocery stores offer fully prepared meals, complete with all of the trimmings. All you do is reheat the food, sit back, and enjoy.

The first time we tried this, I was sure the food couldn't be as good as home cooked. And I was right, it wasn't "as good" but it was good enough and was a good trade for a stress free holiday meal.

• Resting. I have heard it called preemptive resting, which is a good way for stroke survivors to look at rest. Taking frequent rests, lets your body continue healing and rest allows you to accomplish more. Scheduling those rest periods into the day makes resting a more natural part of our lives. This preemptive resting is especially important as you negotiate the holidays.

• Pacing. In order to pace yourself during the holidays, you may need to say "no" to some of the requests you once accepted. Pacing is a key element of surviving the holidays.

• Allow extra time for tasks. Some of the things you have done without a lot of thought will suddenly seem daunting. Take your time, try to relax and accept the challenge of doing things differently.

My mother had a withered arm due to childhood polio and I don't remember anything she couldn't do. She taught me something that has been very important to me since my strokes. "You can do anything anyone else can do, you just have to find a different way to do it."

• Accept help. When someone offers me help, I often brush it off with "No thanks, I can do it." Most of us are used to being independent and in the wake of our strokes, our need to feel independent is especially dear. However, accepting help means more energy for the next task on your list. And it also offers the other person the opportunity to give the gift of helping.

Additional tips for making the holiday easier:

• Use the motorized carts that most grocery stores keep available,

• Shop during off hours, avoiding the busy times. Early mornings and evenings are usually less hectic.

• Take your list shopping with you and stick to it.

• For your gift shopping, shop by catalog or on the Internet. If grocery shopping is too taxing, groceries can often be ordered on the Internet, too. Check local stores for their delivery services. This leaves you with energy to concentrate on other things.

• To simplify gift wrapping, use gift bags.

• Have a cookie exchanging party. Each guest brings one or two dozen kinds of cookies, bringing enough for each guest to have at least one dozen.

• Use pre-printed Christmas cards. If possible, make address labels.

• For your gift shopping, if possible, shop on the Internet. If grocery shopping is too taxing, utilize delivery services. This leaves you with energy to concentrate on other things.

• Keep a stack of magazines and catalogs for your guests to peruse while you complete your dinner preparations.

During the past three years, I have found out that different does not necessarily mean bad. Different is simply different.

Copyright @December 2007
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.