Tag Archives: Stroke Happens

I Don’t Look Sick

13 Feb

I don’t look sick, but I am. I have an invisible illness, fibromyalgia, which causes  intermittent pain throughout the body; arthritis; fatigue and brain fog; and, possibly, my tinnitus. I also have irritable bowel syndrome (IBS), depression and occasional bouts of anxiety. All are connected to each other and to stress.IMG_2054

Stress produces harmful hormones that in large doses can damage the immune system, causing a variety of autoimmune conditions, such as I have developed in the time that I’ve been taking care of Chuck since his stroke in 2007 (and about which I published a book, Stroke Happens, in 2017). The fibromyalgia pain and the unpredictability of my IBS symptoms (bloating, cramps, constipation, diarrhea, fatigue and brain fog) make it difficult for me work reliably.

My symptoms have been sneaking up for years, but suddenly increased in intensity, frequency and duration in the summer of 2018 after a particularly stressful personal interaction. I have submitted to dry needling, physical therapy, food sensitivity testing and other labs; I have sought medical help from specialists, but none in my are (South Carolina) were able to help me, so I have been referred by my general practitioner to the Mayo Clinic.

Meanwhile, I am learning to let go of the things I can’t control–in other words, most of life’s events–and control what I can–that is, my reaction to those events. I practice yoga and meditation; exercise; engage in a hobby (bowling); schedule time daily to “play” (spending time with my dogs in the backyard); eat well (I’m a vegetarian); don’t smoke; and am at a healthy weight. I get an occasional massage, which is one of the best therapies for pain because it suppresses the pain response and stimulates the release of serotonin and dopamine, the feel-good hormones.

Lately, I located a podcast, Like Mind, Like Body, which featured an interview with a doctor specializing in pain. Afterward, I ordered his book, Unlearn Your Pain, and have been reading the material, which includes worksheets and writing assignments. I also subscribed to an app, Curable, which offers meditation, brain training, expressive writing and education designed to help people recover from chronic pain. I can report a significant reduction in my pain since I started these regimes, and I highly recommend them.

My physical manifestations of stress make my life more challenging that it has to be. I’m sure I’m not the only caretaker–or victim of stress–who is suffering from such complaints. I understand how frustrating it is, and I hope that by sharing my experience, I can help someone else find a path to healing. Please feel free to reach out with your experiences with chronic pain, caretaking and healing.

Best, Laura Ann Garren

 

The Dark Side of Caretaking

4 Jul

This entry is about the dark side of caretaking. I am grateful for many things and am fortunate in many ways, but I have additional emotions that come up from time to time and I need to express them. I often feel:

  • ConflictedIMG_8152
  • Conflicted
  • Constrained
  • Trapped
  • Overwhelmed
  • Terrified
  • Anxious
  • Guilty
  • Resentful
  • Remorse
  • Sorrowful
  • Depressed
  • Angry
  • Lonely
  • Frustrated
  • Abandoned

It takes tremendous energy to fight these feelings. For instance, when I look at Chuck sitting in front of the TV day after day, I feel so sorrowful that he will never get any better. Sometimes I resent him because he is the reason I feel constrained; then I immediately feel guilty and remorseful. I feel conflicted most of the time because many of my feelings are at odds with each other.

I don’t always acknowledge or express my feelings because it’s exhausting. Inevitably, however, they leak out at some point (usually at night, when I wake up with a panic attack). The inability to move on and the responsibility taking care of Chuck sometimes grind me down. I feel abandoned when people seem to forget or acknowledge my situation.

I could continue, but I think this message delivers the information well enough. I guess what I’m asking is for people to understand and acknowledge the unchanging nature of my predicament.

I would also like to add that I deeply appreciate the various and overwhelming kinds of support I’ve received: money, surprise gifts, cards, calls and visits. Susie comes three or four times a year. Lisa, who lives next door, helps with shopping, preparing meals and cooking and emergencies, big or small. Dorian is always available to lend emotional support and encouragement.

Thank you for reading. If you would like to learn more about my experience of caretaking, please check out my book, Stroke Happens.

Best, Laura Ann Garren

Stroke Happens Featured in Local Paper

2 Dec

I am excited to say Stroke Happens was featured in our local paper! Article below by Jason Evans, who did an outstanding job.

CLEMSON — Like most married couples, Laura Garren and Chuck Linnell like to rib each other and chuckle at the inside jokes that come with any long relationship.

IMG_5554Their relationship was radically redefined in a matter of seconds in 2008, when Linnell suffered a catastrophic stroke at the age of 56.

Garren recently self-published “Stroke Happens: A Caretaker’s Memoir,” a book chronicling just how their lives changed in the aftermath, as Linnell began the recovery process and Garren navigated their new reality.

Garren discussed the book during a signing the pair held at Nick’s Tavern last Saturday afternoon. An odd place for literature, the Clemson tavern is a special place for the couple — it’s where they first met.

Before his stroke, Linnell taught at Clemson University as an education professor. He was well thought of by his students, so much so that a piece of graffiti on campus once read, “Dr. Linnell rocks!”

“He used to be a great talker,” Garren said. “He could tell some great stories.”

The stroke robbed Linnell of his ability to speak.

“He knows what’s going on, he just can’t express with any language at all,” Garren said. “It’s hard not being able to have conversations. It could have been worse, though — he could have been too disabled to be able to come home.”

Garren wrote the book in the hopes that it would help others.

“(I hoped) it would help other people who were in my position because I had tried to find books written by stroke survivors or people taking care of stroke survivors and there wasn’t that much out there,” Garren said. “I wanted to get it out there because maybe it could help some people.”

Strokes can happen to anyone at any age, even to people like Linnell, a very fit, seemingly healthy man who had no risk factors, according to his doctors.

“He had no warning signs,” Garren said. “Warning signs, that’s what saves people. Anything happening just on one side of the body — droop, paralysis, weakness, a one-sided, really bad headache, if the person suddenly has trouble speaking or understanding speech.

“Anything that’s going on one side, don’t wait to call 911, because time is brain,” Garren continued, alluding to the damage that can rapidly occur during a stroke.

It wasn’t Linnell’s first brush with death. He was in a car accident decades earlier that left him in a coma for weeks.

But his survival at that time came with a cost later.

“It wiped out a lot of real estate,” Garren said. “He didn’t have as much to compensate with as he would have had he not had that first accident.”

A writer and teacher, Garren quit her job to take care of Linnell.

The book draws from emails Garren wrote to friends and family in the early days after Linnell’s stroke and beyond.

“I didn’t really remember a whole lot that had happened because of the trauma, medical post-traumatic stress,” Garren said.

“Those emails generated a lot of support and built community for us. So I referred back to the emails because then I could read them and chart the progress. That filled in some blanks for me,” she said.

The book details the therapy Linnell went through to get back on his feet. Garren had to navigate the confusing, often frightening medical bureaucracy on behalf of her husband.

One idea to get the book out into the community is to leave copies in therapy facilities, Garren said.

“Maybe somebody who needs to read it, and should read it, will read it,” she said. “They can connect and see, ‘Oh, somebody else has gone through this.”

Writing the book became a borderline obsession for Garren, she said. Though a few publishers turned her down, she pushed forward with the memoir.

“I would sit down and write three to five hours, five days a week,” Garren said.

The first draft was completed in about three months.

The book’s subtitle, “A Caretaker’s Memoir,” reflects on her feelings about the situation she was thrust into.

“Caregiver feels more voluntary to me,” she said. “I was forced into this position, and although it was a choice to stay with him and take care of him, it didn’t feel like a choice.

“So I decided I was going to continue to call myself a caretaker because something was taken — the marriage as it was,” Garren continued. “The life we had, the things we had planned — all of that changed.”

Her book describes her process of coming to terms with what happened, not only to her husband, but to herself.

“He probably handled it better than I did,” Garren said. “He’s a trooper. I’ve rarely seen him lose his temper or get upset.”

The book features drawings by Linnell throughout. He added drawings beneath Garren’s signature during the book signing.

“He was always a good sketch artist,” Garren said.

The book also serves as a way to thank all the people who have helped the couple during their transition. Garren writes movingly of the support that surrounded her and of the isolation she felt at times while caring for her husband 24/7. Friends raised more than $10,000 to allow them to travel to and stay in Michigan in order for Linnell to be enrolled in an intensive therapy program.

“I wanted to sort of acknowledge them and thank them,” Garren said.

The couple also drew support from their four-legged friends, many of which are described in the book. One dog even visited Linnell in the hospital soon after his stroke.

“Whoever I married was going to have to love dogs,” Garren said. “They’re real, real important in the narrative of our lives.”

At that, Linnell voices his agreement by imitating a dog’s howl.

Garren is now a dog trainer, becoming certified in 2012.

“I use my writing skills with that,” she said of the treatment plans she creates for her clients and their owners. She’s also teaching part-time at Clemson again.

“Stroke Happens” is available on Amazon, alongside her first book, “The Chattooga River: A Natural and Cultural History.”

For more information on the book, follow the “Stroke Happens” page on Facebook.

jevans@upstatetoday.com | (864) 973-6681

Follow on Twitter @citizenjason5

Let Me Tell You About My Book

25 Oct

Stroke Happens: A Caretaker’s Memoir tells the story of my husband’s stroke and my role as his caretaker after he suffered a massive stroke in 2007, at the age of 56. I decided to self-publish through Amazon because, after submitting the manuscript to more than 30 publishing companies, I couldn’t get anyone to read it. (I still wonder, “Why do publishers have submission guidelines on their websites if they weren’t even going to look at submissions?” I still don’t have an answer.)

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Finally, I overcame my reservations about self-publishing, realizing I have nothing to prove since I published The Chattooga River: A Natural and Cultural History (2013) through The History Press.

If you follow my blog and find it helpful, please read my book for more a detailed account of my journey through the tumultuous emotional landscape of stroke recovery. I hope my experience can help others find answers, feel validated and reach acceptance in their role as a caretaker; or simply be informed by my description of one aspect of the human condition

Thank you for reading. Best, Laura Ann Garren

 

Get What You Need

16 Feb

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Chuck loved Valentine’s Day. He would draw me a little cartoon in the morning before going to work. When he came home, he would bring flowers and a card. For a few years after the stroke, I keenly felt the loss of this silly holiday. Everyone (at least on Facebook) was getting flowers or candy or making plans for dinner. My sweetheart, once so thoughtful, doesn’t even realize it’s Valentine’s Day; and if he did, he would be unable to get me a gift. For a long time, I felt sorry for myself on V-Day, but then on one February 14th, I decided to feel gratitude and was moved to share on Facebook:

“I was tempted to feel sorry for myself today, but then I remembered all the times Chuck brought me flowers when it wasn’t even St. Valentine’s Day. I’m lucky that I found someone who genuinely caring, thoughtful, generous, and so many other wonderful things. He still is, even if he can’t express it in the tradition ways. I’d rather have him here, as is, than all the flowers, candy, and ‘Be Mine’ cards in the world. Plus, he’s given me the biggest gift of all: a way to express MY love in a way most people aren’t called upon to do, by taking care of him.”

Forty-eight people “liked” the post and 15 people commented.

“Laura, this is the most beautiful thing I’ve seen all day!!! What a fabulous valentine for your husband!!! What a beautiful spirit you have!”

“I don’t know your story, but I’ve never heard a sweeter Valentine!”

I was so touched. Each time I got another replay, I felt I had received a little Valentine.

In the words of the Rolling Stones, “You don’t always get what you want…but if you try sometimes…you get what you need.”

If you would like to learn more, please read my book, Stroke Happens.

Best, Laura Ann Garren

 

How to Communicate With Someone Who Has No Language

4 Dec

When I tell people that Chuck’s stroke left him without language, the first question is usually, “Can he read?” Is reading language? Yes? Then the answer is, “No, he cannot read. Or write, or speak.” Furthermore, his comprehension of spoken language is poor.

Chuck has aphasia, a condition that can result from a stroke or other head injury and results in a loss of language; and apraxia, the ability to manipulate the musculature of the mouth in order to produce sound. (Which is beside the point in his case, sense he has no verbal capacity.) So how do we communicate? One way is through supportive communication. I’ll explain it as it was to me, then reveal which techniques worked best for us; you may find some of these suggestions helpful.

GarrenFigure8

How to Engage in Supportive Communication

1. Choose a time when Chuck is fresh and a place with few or no distractions. People who suffer from the affects of a stroke or head injury tire easily and are easily distracted by extraneous noise or activity.

2. Make sure Chuck has his dry-erase board and marker, picture dictionary, photos and photo albums.

  • Dry-erase and marker. The dry-erase board and marker were absolutely brilliant assistive tools and were suggested not by a speech therapist but by my niece Anna, who is a counselor and an artist. Chuck, himself a skilled artist, is able to sketch representative, descriptive, often comical drawings to indicate ideas and needs.
  • Picture dictionary. Chuck was provided a picture dictionary while at the speech therapy “camp,” but found it troublesome to use. Too much was going on in the illustrations, say a market full of people, food, items and activities. To identify a single item—let’s say an apple (to indicate he wanted one for a snack)—took too much effort. His vision deficit probably contributed: he has a right field cut, meaning he lacks vision on the inside of his left eye and the outside of his right eye, a result of the stroke.
  • Photos and photo albums. Photos and albums worked well for Chuck because he recognized himself and others and had positive associations and memories connected to the people and events in the pictures. They also prompted name retrieval. Part of Chuck’s cognitive deficits include not being able to visualize whom I’m referring when I say the person’s name; he has to actually see the person or a photo thereof.

3. Ask him if he has a topic he would like to discuss, using one or all of the tools above.

4. When he points to or draws something, ask him to say it. Give him time to formulate the word, and ask if he would like you to write the word. If he continues to struggle after about 20 seconds, or if he asks for help, prompt him. If he cannot get it by himself, say the word and have him repeat it. Be patient. Give Chuck time to process, prepare, and articulate. This process will be fluid, so continue using the technique described as the conversation moves from topic to topic.

5. Spend the same amount of time telling him about yourself or something of interest to you or how your day is going. Speak slowly, repeat frequently, and use the dry-erase board to write key words and illustrate concepts in order to increase his comprehension. Newspapers and magazines are a good source of topics. Be patient. Give him time to understand your message. Repeat the message as needed.

6. After about a half-hour, progress to an exercise or game.

Other Things to Remember

If you are talking to Chuck, look directly at him. I have noticed that since Chuck is unable to contribute to a conversation, people tend to ignore him because, I suppose, he cannot contribute. Ignoring him is not only rude but also can intensify the isolation and loneliness frequently experienced by people who have aphasia.

Keep it short and simple. Chuck gets frustrated when someone talks to him and he doesn’t understand, or when he tries to express an idea but cannot make himself understood. Yes/no questions are best. Don’t talk too much; it’s okay to just share space with him.

I’ve been told that a hallmark of aphasia can include a disinterest in the lives of others (as well as other personality changes). I’m not sure if this is organic/structural or the result of being the center of attention during a long period of rehab. Chuck definitely has become detached since his stroke, his emotional repertoire drastically reduced. Luckily, he is usually in a pleasant mood, which is not always the case with stroke survivors.

I hope someone finds these ideas helpful and applicable to their particular situation. If you would like to read more about our experience with stroke, recovery and caretaking, please read my book, Stroke Happens.

Best, Laura Ann Garren

 

Resources for the Stroke Survivor/Caretaker

3 Dec

Many stroke survivors do get full function back. I decided to assume that Chuck would, and I became prolifically proactive, spending hours surfing the Net looking for alternative or supplemental treatments and assistive devices. I am sharing my findings in case they might help someone else.

Clinical Trials
Clinical trials are free but experimental, designed to test new therapies or medical treatments. We ended up not pursuing this route, but here are some sources, typically sponsored by the federal government and private hospitals, universities, and research centers.

http://www.stroke.org/site/PageServer?pagename=clinicaltrials
http://www.strokecenter.org/trials/
http://www.centerwatch.com/clinical-trials/listings/condition/142/stroke

Constraint Induced Therapy (CIT)
I read about CIT in The Brain That Changes Itself, by Norman Diodge. CIT involves restricting the use of the functional hand and thereby forcing the affected arm to work. The action of movement, even if a therapist manually produces it, causes neurons to fire. The arm communicates to the brain, “Hey, I’m still here! I need neurons.” Treatment takes place daily and lasts several hours. This kind of intensive therapy has been shown to be more effective than conventional therapy, which usually takes place three times a week. In order to qualify for this program, potential participants must have the ability to make a fist, which Chuck never was able to do.

The Mirror Box
The brain is the most complex organ of all the organs, containing the universe and the sum of all we know, as well as managing all our involuntary bodily functions and reflexes; which is why we don’t have to think about breathing. When brain cells are killed, as in a stroke, they don’t grow back. Luckily, the brain has plasticity; it can compensate for such loss with the help of neurons, which can grow new pathways around the damaged area. However, when a limb, especially an arm, is paralyzed as a result of a stroke, it suffers “learned disuse,” and the brain has to be coaxed into giving back function to the arm. Sometimes, it has to be tricked. This is how the mirror box works.

The mirror box is constructed of slick fabric stretched around wires. On one side on the outside of the box is a mirror. The affected arm is placed inside the box, where it cannot be seen; the functional hand rests outside the box, facing the mirror. The patient moves the functional arm while looking at its reflection in the mirror, imagining he is moving the affected arm. The brain is thereby tricked into communicating with the arm, which is what has to happen in order for the arm to move. Best of all, they only cost $40.

The Biffy
In some cases, the caretaker of  the stroke survivor has to assist in cleaning after a bowel movement. In order to avoid this task and to spare Chuck’s dignity, I turned to the Internet, where I discovered a gadget that improved our quality of life to a great degree: the Biffy. It fits onto the toilet bowl and diverts water, by way of the intake valve, through a spout that sends a jet of water into the nether regions when the user pulls a lever. The cost was $100, much less expensive than a real bidet.

Rest   With Chuck After Stroke
A person who has suffered a stroke needs lots of rest. Chuck slept 12 hours a night and took naps during the day for the first year post-stroke. The brain needs that time to heal, so let a stroke survivor sleep as much as possible.

Knowledge is Power
I also found other sources of information on the Internet, such as free magazines Stroke Smart and The Stroke Connection and books like My Stroke of Insight; Head Cases: Brain Injury and Its Aftermath; and The Brain That Changes Itself. I read as much as I could, on line and off, about stroke. As I could find very few books from the point of view of the caretaker, I wrote one myself: Stroke Happens, available on Amazon.

Educating myself was one of the best ways I was able to help Chuck. I gathered a mass of information—some helpful, some not—much of which no doctor or therapist ever told me about. In addition, doing the work helped me feel empowered in a virtually uncontrollable situation. Fact-finding became a form of free therapy, which kept me from feeling helpless and filled many hours that otherwise might have been spent despairing.

Best, Laura Ann Garren

 

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