Retreat & Refresh Stroke Camp Blog: 2020

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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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Sunday, December 20, 2020

Stroke and Young Children

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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.

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

Sunday, December 13, 2020

Keeping on Track

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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.

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

Sunday, December 6, 2020

Surviving and Thriving Through the Holidays

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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.

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

Sunday, November 29, 2020

It's Time to Celebrate

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Claudia Warner, the author of this article, was a member of the StrokeNet staff.

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It’s Time to Celebrate

By Claudia R Warner

The Holiday Month is here and it is time for celebrations—family, food, gifts, etc.

We are really celebrating as Wes has his last two sessions of Physical Therapy this month! It has gone very well, he has worked very hard and so has his therapist. The result is that Wes is moving better than before his surgery and is in full steam. His walking endurance is much better, too. That will be a plus when we go shopping and he wants to get out of the chair.

It appears that we’ll have a White Christmas---we had a very White Thanksgiving and the stuff just won’t go away! The merchants seem happy as the snow has put people in a shopping mood a little early this year.

I haven’t done much shopping, yet, but am getting ideas for Wes’ gifts. It is hard to think of things that are useful, make his life a little easier, and that he will enjoy. He doesn’t give many clues as to what he’d like, so I’ll just fumble along…..

If any of you are in the same boat, there are a few items I can suggest as gifts for the one you care for.

1 Touch lamps

These are so-o-o handy on nightstands and end tables. No fumbling for switches or buttons to press—a light touch turns on the light. Warning—dogs love to turn these on! Numerous times I’ve found lamps lit during the day and our furry friends seem to be the culprits!

2 Automatic Hand Soap Dispensers

We have these in all bathrooms and the kitchen. They are great-one just puts their hand under the spout and just the right amount of soap comes out.

3 Touch Faucets.

These are expensive and I wish we had one. It would be so easy for Wes to use.

4 Quad Bases for Canes

For those who have a collection of canes or walking sticks, these would be a welcome gift. All you have to do is push the base on the tip of the cane and the cane now will stand by itself!

5 Talking Wrist-Watch

These are so handy for anyone who has a problem reading a clock. The dial is large, lights for night use, and at the push of a button it tells the date, year and time.

6 Photo Phones.

These have places for small photos of people your “charge” might call. You program phone numbers to correspond with the photos. Lift the receiver, press the photo and the call is placed!

7 Gift Certificates

Ah, the perfect gift for anyone. They can be used in stores or on-line. AND, there are so many varieties that no matter what one’s interest, there is a card that will “fit”. Wes’ favorites are ones for bookstores and coffee shops.

8 Portable DVD Player

These actually are reasonably priced! I plan to get one for Wes that has a 9” screen and a long lasting rechargeable battery. He enjoys DVD’s from Great Courses, as well as movies. This is something he can operate by himself, thus adding to his feeling of independence.

9 Food

This is a favorite gift—homemade goodies, or purchased treats. How about giving a basket of fruit? You can fix your own, or order one from a supplier. All you need is holiday wrap, bows and a nice container. Fill it with fruit from your favorite grocery store and you have a nice gift. Plus one that is healthy!

Happy Gifting! And Happy Holidays to all of you from the Warner Abode.

We make a living by what we get but we make a life by what we give.

Winston Churchill

Thursday, November 26, 2020

Street & Steeple by Phil Bell

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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.

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Street & Steeple for November 27 th , 2020

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“Time To Come Together”
By Phil Bell, retired, pastor, University Baptist Church

Are you like me? Yesterday, was one of the things for which you were thankful was that this year’s presidential election is finally over? Each of us can now do one of three things, be bitter & yell “foul,” be smug & self righteous, or unite behind our elected leader! I urge us to do the last! I am, as I’m sure you are, either happy, disappointed, or even angry at the outcome, but that’s not what’s important now. Our country’s future is too important to not do our very best to help ensure it’s a bright one. “Just how do I do that?” you may ask. One way, I suggest, is by accepting the outcome, graciously & not complaining nor gloating about it to each other nor by way of social media and, more importantly, by praying for President elect Biden both before and, especially, after his inauguration. Most certainly he will need the Lord’s help as he inherits a deeply divided Congress, not to mention, a deeply divided country! Some, no doubt, will have trouble doing that, but both the nation’s welfare and the Bible require it! The Scriptures clearly assert that this world’s leaders are in place at the will of God and we are to support them, knowing that. We all should thank God that we live in a country whose leaders are chosen by ballots, not bullets! Let us honor that God given privilege by being appreciative,
demonstrated by our support of the process. In the Christian world, as well as the political, too often we are divided. Thankfully, here in Macomb there exists MACMA (Macomb Area Christian Ministerial
Association). This very column is graciously provided each Friday by the “McDonough County Voice” to that association. I am, personally, very grateful to the pastor members of MACMA for graciously encouraging my participation with them even though I don’t have an active pastorate. In our Macomb area there are very many churches belonging to several denominations, with no less than six Baptist churches alone! Too often we, unintentionally, view ourselves in competition with each other rather than united as the one catholic church! That should not be so! Even Jesus’ disciples had that problem, also. In the ninth chapter of Mark we read about them coming to Jesus saying they had found someone casting out demons in His name and they had tried to prevent him because he wasn’t following them. In verse 39 Jesus tells them not to hinder him because “whoever is not against us is for us.” There are valid reasons for many churches and denominations, such as doctrinal differences, as well as, different preferences for the frequency and style of worship. Any time we hear of a church struggling or in some
kind of trouble, all other local churches ought to be sorrowful and praying for their brothers and sisters in Christ, just as all our churches should rejoice when we see another church growing and winning people for the Lord! Way too often we are jealous of another church’s growth. MACMA exists for just those reasons of mutual support and mutual rejoicing. I think it’s time to listen to the advice of those giants of philosophy, the Beatles, as expressed in their song “Come Together.” Written by John Lennon for a California gubernatorial race. Its lyrics include “Come together, come together, come together over me.” I believe it’s right in two respects, we should come together and do so because of something
or someone. Nationwide we should do it for the cause of our country and in our churches for the cause of Christ! There are many examples of groups which should work together, but are instead competitive. I even encountered one when, after my stroke, I had to enter a nursing and rehabilitation facility. The CNAs were excellent, as were the therapists. My therapies would be scheduled throughout the day and the times posted in my room the night before. Because I wasn’t ambulatory the CNAs were supposed to take me, in my wheelchair, to the therapy room at my appointed times. Their primary responsibility was my rest and health, so, sometimes they were sometimes reluctant or tardy taking me. The therapists’ responsibilities were my recovery of the physical abilities I’d lost due to the stroke, thus, they wanted to work with me for the full time of my appointment and sometimes came to my room to get me!! These two groups both wanted to advance my recovery, but were so intent on their own part in it they almost became competitors. Fortunately for me they came together and did wonders for preparing me to be able to return home! The Beatles sang another hit, capturing where we are as a people, “We Can Work It Out,” urging, “Life is very short and there’s no time for fussing and fighting my friend. Try to see it my way. Only time will tell if I am right or I am wrong, while you see it your way. We can work it out. We can work it out and get it straight. We can work it out!” If we would all try to do that with those with whom we disagree, our churches, community, and country would be so much better! Let me reference a couple more pop & rock songs. One is the Brotherhood Of Man’s “United We Stand Divided We Fall.” As it says, “When our backs are against the wall we’ll be together.” The other is Dave Mason’s “We Just Disagree.” The lyrics include, “There’s no good guys, there’s no bad guys, there’s only you and me and we just disagree.” There are certainly honest differences in our points of view in this country. That is not wrong. In fact, friendly, honest disagreements are good for a democracy! We must remember that disagreeing doesn’t make one of us good and the other bad! I believe, of course, nothing is more important than spreading the Gospel, the work about which we all are all to be! As a country, our backs are indeed against a wall and it is time to come together!

- Phil Bell, retired, pastor, University Baptist Church

Sunday, November 22, 2020

50 Ways for Family Caregivers to Take a Break

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The following is an article originally posted on https://www.mycaringplan.com. This web site was founded by Daniel Morris. His site addresses issues focused on senior living and home care for them, however, there are some articles on his site that can be useful for caregivers of stroke survivors also. This week's article by Brandy Wells does a good job of listing ideas a caregiver can use to refresh themselves. They may not all work for a stroke survivor's caregiver but many of them could prove useful. There are many links included in this post. I have checked them all and they have a wealth if information for caregivers.

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BRANDY WELLS

50 Ways for Family Caregivers to Take a Break

by Brandy Wells

September 8, 2020
Caregiving

As a family caregiver, you may feel it is nearly impossible to take a break. This role often involves an around-the-clock commitment to your loved one, so you may feel you need to be available at all times. However, as a caregiver, it is crucial that you find time to take small breaks. According to research, personalized, short breaks can lead to positive improvements in caregivers’ health and wellbeing. It can even improve your relationship with the loved one in your care. On the other hand, not taking breaks can result in burnout, mental and physical health issues, sleep disturbances, and more.

Fortunately, whether you need a few minutes, a day, or even longer, there are solutions to help you get the breaks you need. Below, you will discover a list of 50 ways for family caregivers to take a break. These include quick activities at home and more extended options, all with the goal of tending to your wellbeing. Compile your favorites into a personalized caregiver toolkit and use them as often as you’d like.

1. Practice deep breathing

A 2016 study showed that deep breathing relaxation practices lowered strain and systolic blood pressure for dementia caregivers. So, find a video online or attend a workshop to learn how to practice deep breathing, and introduce it throughout your day.

2. Take a hydration break

Caregiving is a physically demanding job. Drinking more water can improve your physical health and provide a quick break as well. Prepare yourself a water bottle, maybe with a wedge of lemon, to carry with you throughout the day. It will act as a reminder to take a short break, breathe, and rehydrate.

3. Take a break with music

Studies suggest dancing can improve emotional wellbeing, coping strategies, and self-esteem. So, turn on your favorite song and dance for a short, energizing break.

4. Try adult day services

For a longer break, you can try adult day services. Search for options in your area to bring your loved one to a facility, or invite a caregiving professional into your home for the day.

5. Choose a task and ask for help

Asking for help may feel difficult, but the act helps caregivers avoid isolation and strengthen their sense of community. If extended support is unavailable to you, try asking a friend or family member for help with one task, like preparing meals or doing laundry.

6. Take a short stroll

If you are able, taking a short stroll can have numerous benefits for a caregiver. Physical activity can help you prevent illness and boost your mental wellness. Plus, a nice change of scenery will do wonders for your mood.

7. Make a list

As a caregiver, you may feel there are millions of thoughts constantly running through your mind. Pause to get it all on paper, making lists for both you and your loved one. This will help free up mental space to focus on the tasks at hand.

8. Make your favorite hot beverage

A nice coffee, tea, or apple cider provides a cozy moment of respite with each sip. If you don’t have much time for a break, try savoring a few sips of your favorite drink to gain a sense of calm.

9. Call a loved one

Caregivers often report feeling socially isolated. You may miss friends or family, and they surely miss you too. Social support is proven to improve physical and mental health and helps us build resilience, so plan a call and enjoy a nice break catching up with a loved one.

10. Do a short exercise

These days, exercise doesn’t have to mean leaving the house, and it doesn’t have to take much time. Try an online fitness instructor, like walking at home with Leslie Sansone, and build a quick, rejuvenating break into your day.

11. Check for community resources

A 2013 study suggested 85 percent of caregivers felt a lack of community resources. Of course, these will depend on where you live, but churches and community centers are good places to start. Check your local networks to find volunteers or other forms of caregiver relief in your community.

12. Try Meals on Wheels

Meals on Wheels is a non-profit that helps seniors age with dignity by delivering meals across the country. This can help you build in a break by freeing up the time you’d normally spend preparing meals. Head to their website and search for programs near you.

13. Take a time out

Time outs are typically for children, but why not use this strategy for yourself? When you notice you are more irritable or frustrated than normal, put yourself in “time out” for a few minutes to regain composure.

14. Try respite care

Respite care is a service that offers a short-term break for family caregivers. This can happen at home, in a daycare facility, or in a residential center that permits overnight stays.

15. Work with a caregiver coop

Caregiver Cooperatives work with caregivers across the country to provide in-home care services. Find one in your area and learn the ways they can offer relief.

16. Take a nap

Studies show that over half of family caregivers experience sleep disturbances. Sleep issues and sleep deprivation significantly impact your physical and mental health, so try to nap or rest when your loved one takes some quiet time.

17. Stretch

Daily stretching can help you keep muscle tension at bay. Plus, it offers a nice pause for both the body and the mind. Take a ten-minute stretching break as an act of kindness for yourself.

18. Prioritize your mental health

Many caregivers experience depression, anxiety, or grief along with their role. If you don’t have time to seek professional mental health services, you can take a quick break to talk to a therapist online through an app like Talkspace.

19. Keep a gratitude journal

Gratitude journaling is the act of writing down things you are grateful for in a notebook. Taking a quick break to jot these items down has been shown to improve sleep and lower stress in regular gratitude practitioners.

20. Watch a funny video

They say laughter is the best medicine, and it’s true. So, try taking a few minutes to laugh at a funny video to reduce stress, and promote muscle relaxation.

21. Check if Medicare can help

Medicare offers resources to those that receive their coverage. So, take a look at their website to explore the caregiver aid they have available.

22. Find a companion

Companions are volunteers who can visit and develop a relationship with your loved one. This offers an important opportunity to socialize and frees you up to take a much-needed break.

23. Check for financial support

The US government website offers resources for family caregivers. Take a look at their support offerings and discover new ways that you can take a break.

24. Look into help for specific circumstances like Veteran aid

If your loved one is a Veteran, they have special support resources available to them. Check the website for the US Department of Veteran Affairs to learn how these resources can offer you some relief.

25. Look into non-profits that offer services

Non-profits like Youth Care offer free in-home activities that your loved one can enjoy. This non-profit in Los Angeles brings trained undergraduate and graduate students into the home to engage in stimulating activities. Search for services like this in your area to get some downtime at home.

26. Invite younger family members for a visit

Younger family members can also provide relief. Invite them over to visit with your loved one while you take a bit of time for yourself.

27. Bring a knitting project

Taking time to do an activity with your hands can lower physical tension and help you calm down. Try knitting or another simple craft as a way to take a break when you can’t get away.

28. Online courses

Nowadays, anything you want to learn is available online, often at an affordable price. So, try language learning apps like Duolingo or websites like Udemy to spend a bit of time learning each day.

29. Take a break with a pet

Being around pets or therapy animals can relieve stress and feelings of social isolation as it increases levels of oxytocin in your brain. So, try bringing a calm pet with you to your caregiving location or visit a neighbor’s pet for a few minutes of cheer.

30. Ask teenage neighbors to help with yard work or chores

Luckily, teenagers often love doing chores for a bit of spending money. Ask teenage neighbors or family members if they’d like to help you with yard work or other tasks.

31. Take a break to have a favorite shake

32. Try a guided meditation

33. Watch your favorite show

34. Have groceries and other essentials delivered

35. Ask a neighbor to visit for tea

36. Pay a professional caregiver for one hour

37. Add breaks into your daily schedule

38. Try an at-home facial

39. Try aromatherapy

40. Pick up a childhood hobby

41. Try a self-massage

42. Try yoga or tai chi

43. Sit in the sun for five minutes

44. Listen to a podcast or audiobook

45. Practice mindful eating

46. Plan a fun way to unwind later

47. Prop your feet up for a few minutes

48. Write a letter to an old friend

49. Order delivery food

50. Make a list of the ways to take a break that works best for you
Final thoughts

To sum up, caregiving is a mentally and physically strenuous role, and it may feel like you’re never off the clock. However, there are resources to help, and at-home strategies to help you get a bit more time for yourself. Everyone’s methods will be unique to their situation and needs, but getting more breaks is possible. In short, you should take some time to develop your caregiver tool kit and give yourself some much-deserved relief.

Sunday, November 15, 2020

Eleven Year Journey to Acceptance

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Jim Sinclair, the author of this article, was a member of the StrokeNet staff.

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Eleven Year Journey to Acceptance
By Jim Sinclair

As I am approaching the eleventh anniversary of my strokes later this month, it seems like a good time to take stock of my present stroke circumstances. I have always felt that in my particular situation dealing with the physical effects was a lot less formidable task than dealing with the mental aspects of the strokes. My first awareness that I had experienced strokes came when I realized that my left arm and hand had changed into what I thought was lead.

Although I could not move that arm or hand, it was not long before the little finger on that hand started to twitch. Somehow that twitch came with a confidence that if something has even the smallest ability of movement, efforts can be undertaken to enhance that ability to a far more advanced level of functioning. First it was that twitch and then very, very gradually there was movement in each of the fingers of that hand, which was slowly followed by movement of my left arm.

Hundreds of hours of physiotherapy and occupational therapy resulted in strengthening that hand and arm into fully functioning appendages. I don’t recall having that same lead like feeling in my left leg which was also paralyzed, but I do recall my first post stroke physiotherapy session in a neurosciences unit. After packing my newly replaced right hip with sandbags to restrict movement the physiotherapist asked me to wiggle the big toe on my right foot. Following that achievement I was asked to try to wiggle the big toe on my left stroke affected foot.

To the surprise of both of us it moved. Following this seemingly miniscule victory about ten days post stroke, gradually expanding therapy activities over three months resulted in my gaining pretty much full use of my left side. The very last physical effect to be overcome was the paralysis in the left side of my face. At this point (11 ears post stroke) my physical deficits are minimal when things are going as they should. Whenever an opportunity arises I try to open jar lids with my left hand.

Usually it works, but at times I need to use my right hand with my left hand bracing the jar. It is of little consequence that I occasionally fumble slightly when picking up small items with my left hand. When I am tired or frustrated my left leg will drag a little. At almost 11 years post stroke the most major persistent physical issue remains to be fatigue. At times my cognitive functioning is not quite what I would like it to be.

When I learn that I have misinterpreted information or that my thinking is incorrect, these can lead to confusion and frustration; which can in turn influence my physical functioning much in the same way as fatigue and overtiredness. I believe that making a full recovery refers to attaining a quality of life which is meaningful and satisfying given our present circumstances. I consider myself to be fully recovered with any residual stroke effects being simple annoyances.

My strokes themselves were an event that occupied only a microsecond of my life but resulted in very dramatic changes in my life, including changes in my personality. Early on in my recovery much of my focus was on dealing with these changes. A decade later I don’t think I am even aware of what these changes entail. I only know that most of the time everyday life is as just as good as it was over more than a decade ago.

In fact, being a Canadian snowbird celebrating Thanksgiving in Canada in October and US Thanksgiving in November allows me to be doubly thankful for all the positives in my life. This appreciation of all that is positive is enhanced by my awareness that in the early afternoon of December 24, 2003, the medical professionals attending to me believed that I was not going to survive past that day.

I remembering that there was a period that I could not sit in a wheelchair without slumping over. I remember that there were periods of time when I felt very confused. I remember times when I struggled with being easily overwhelmed by the environment around me. These experiences accentuate the positive nature of my current quality of life. Like many stroke survivors, I had a very difficult time the first two years when it felt almost impossible to view my life and stroke issues in anything other than very negative terms. I believed that life was not the way that it was supposed to be.

After these many years, I have finally accepted the notion that stroke is not something we ever get over; it is something that we learn to live with and adapt to. During this eleven year journey life became much better once I came to truly believe that the way the things are at any given moment are the way they are meant to be at that particular moment.

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

Sunday, November 1, 2020

Finding a Place Where Handicap Does Not Matter

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David Wasielewski, the author of this article, was a member of the StrokeNet staff.

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Strategies for Surviving Stroke and Diability

By David Wasielewski

Finding a Place Where Handicap Does Not Matter

A stroke often leaves a survivor with extensive physical and mental deficits. The survivor must deal with a variety of new challenges or what is commonly referred to as handicaps. Interaction and discussions with others who face similar challenges has recently led me to a personal realization. One of the ways to address a handicap is to find a place where the survivor is not handicapped, where the physical or mental challenge becomes irrelevant. Moving on after a stroke may not always be about overcoming physical or mental challenges, but rather can be about finding a place where they don’t matter

As a survivor with hemiplegia I was initially frustrated that I could no longer participate in a variety of physical activities. I initially tried to participate in some modified way. Skiing with specialized equipment proved to be too much of a challenge, physically and mentally exhausting. Being in that environment only served to emphasize my stroke related losses. Frustration and anger were evident as I continued my struggle. This was obviously not a good direction for me. It wasn’t easy but I just finally stopped beating myself up. Testing myself in this way, although necessary to the process, was not productive.

My post-stroke adventures included returning to school. This was a step into the unknown as was unsure of my ability to concentrate study and learn. I quickly realized that I was able to function in the classroom environment and that, in that environment I was not handicapped. Sitting in a classroom desk, studying and discussing issues was a place where my handicaps did not matter. In that place I was just like everyone else!

I spoke to a woman who suffered a traumatic brain injury. Prior to her injury she was a successful finance professional. The injury left unable to deal with numbers read or write, a devastating loss which ended her career. She always enjoyed singing and still retained that talent. Instead of fighting to get her finance skills back she enrolled in music classes, performs locally, and is now a music major in the honors program. She found a place where her handicap did not matter.

Another member of my stroke group is challenged by severe aphasia. Prior to her stroke she was a child care professional and enjoyed painting. The aphasia prevented continuing with child care but did not interfere with the ability to paint. Rather than struggle with communicating with children she now spends her time painting, a place where her handicap doesn’t matter. She has managed, over time, to regain some speaking ability and now appears at seminars and classes to increase aphasia awareness in the community, again a place where the handicap doesn’t matter or rather, is seen as a positive thing.

Yet another member of the group with aphasia recently decided to take piano lessons. Playing the piano is an activity where her aphasia is irrelevant.

Of course, for these survivors, the challenges of the new handicaps still exist. The finance professional needs help managing her personal finances. She carries a recorder to help compensate for the reading and writing deficits. The aphasic woman has difficulty with communications, especially phones. I have trouble navigating around campus to and from classrooms with my cane. We all find that dealing with these struggles is worthwhile on our journeys.

The lesson here for the reader is that stroke survivors have number of different strategies they can use to move on with their lives. Some may choose to recreate their pre stroke lives and overcome challenges that stand in the way. Others can and do find places to be where their newly acquired handicaps do not matter. Is one strategy better than the other? Does the survivor need to choose one or the other strategy? That is always up to the individual as we all have different paths to our new places in this world.

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The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

Monday, October 19, 2020

BE-FASTER

http://www.unitedstrokealliance.org/

www.strokecamp.org

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