Browsing Posts in Experiences

Author: Sarah Heiskell

Gary Bachers was a talented pianist and worked as a doctor for 10 years, but he didn’t find his life’s work until after he had his stroke.

In 1987 at the age of 37, he suffered a massive stroke, which paralyzed the right side of his body and left him with aphasia.

“Aphasia affects a person’s ability to communicate,” according to the National Aphasia Association’s website. “The principal signs of aphasia are impairments in the ability to express oneself when speaking, trouble understanding speech, and difficulty with reading and writing.

The effects of aphasia can differ from person to person. Bachers still has the ability to read a newspaper and can understand conversations; he just cannot participate in them.

After his stroke, he picked up a colored pencil with his left hand and began practicing the stroke that would eventually lead him to a new career.

“It has become a passion for him; it’s his life’s work,” said Gabrielle Bachers. “It is his form of expression.”

What Bachers cannot say with words, he says with art.

“He was always very artistic,” Mrs. Bachers said. “He was a doctor, but he always had that creativity in him.”

Growing up in Winnipeg, Manitoba, Canada, as an only child, Bachers took piano lessons and participated in recitals anc competitions all the way through college.

“He was a wonderful pianist,” Mrs. Bachers said. “He still plays the piano with one hand, and it is amazing. If you’re not in the same room with him, you would never know.”

The stroke came as a complete surprise to Bachers’ family, because there was no history of stroke or heart disease in his family.

After his handicap forced him to discontinue his practice in New Boston, he began using art as a part of his own rehabilitation and therapy, Mrs. Bachers said.

“We just started this because we were desperate for him to do something,” she said. “After the stroke, he was naturally very depressed.”

Bacher’s wife and children continued to give him new things to try to keep him busy and take his mind off his disability. “He was so stubborn that he wouldn’t do it because he knew he couldn’t do it perfectly,” said Mrs. Bachers. He was so used to doing everything perfectly all the time.”

Eventually, he found a medium that he could control - colored pencils.

“We laugh sometimes when we look at the first things that he drew,” Mrs. Bachers said. “It took alot of work and a lot of encouragement to get him where he is today.”

When looking at Bachers’ current series, a theme clearly emerges. Full moons and leafless trees can be found in every piece. “Most of his work has always had the moon,” said Mrs. Bachers. “He can’t tell us exactly what he’s trying to say, be we’ve decided that the moon is universal and everyone can look at it all over the world and feel the same thing.”

In previous years, Bachers focused on large leafed flowers, Mrs. Bachers said - but then he started doing trees. “The trees started after a big ice storm we had. We were without electricity, and our property was just filled with trees, so we were living with a bunch of broken branches. After that, he started doing trees. We became so aware of how beautiful the trees were and how important they were to us.”

Every day, Bachers fills his morning and afternoon hours working on his art, said Mrs. Bachers. He spends up to three or four weeks on some of his larger works. “It is essentially his job. Nothing holds him back.”

After Bachers completes a piece, it is Mrs. Bachers job to give it a name. She interprets the work and decides on a name. He always gives his approval on the titles of his work. “I just wish he could tell us more,” she said. “My son and I talk, and he grunts and groans and can’t really express himself, so we can just imagine.”

Mrs. Bachers has worked with her husband since he started his family practice and is continuing that tradition by framing his artwork and scheduling showings. “It’s wonderful for the kids to see their dad not give up, ” said Mrs. Bachers. “He had to change careers, but he’s doing wonderful in his new career.”

click here to go to Gary’s website.

Learning to Read Again

Author: Donald Weinstein

It has been a cathartic exercise for me to chronicle and sequence the major milestones of my stroke in detail, from stroke victim to stroke survivor and beyond, so that I could go on with my life.

In February 2002 I had an embolic cerebrovascular accident with severe aphasia. The second I woke up from my stroke that day in the hospital I was frightened even before I uttered any words. It was similar to Monet’s Haystack. There was a pale hue; there were changing lights. The color was gray purple. It seemed to me that I was not visible. I could not see out of my bed and others could not see me. It seemed to me that I was a part of a vague light and I could be a fragment that would not be perceived. In a moment I knew that I could not speak, read, or write. I could not communicate. The nurses spoke to my wife Dale and son Jeff. Discussions were with my son and wife and the doctors, nurses and my business associates. Suddenly, I knew that I could not talk. I could not talk to myself. In those moments I was a non-identity. I wanted to die, at least I thought so although maybe not. I remember that I cried. In a primordial yell, howl and moan I told my son that I wanted to die if I could not speak, read or write. These moments, these were frightening seconds and minutes, this torment. I was a pale tone, not seen or heard or felt.

Within three months of my stroke, on Pesach (Passover), as people ate their appetizers, I played with my granddaughters, Alison, 5, and Jessica, 1, in their bedroom in our house. We colored and they talked, especially Alison. They chattered with each other. They lay on the floor and colored and negotiated for different crayolas. They talked continuously. I loved their voices when they made the sounds of “grandpa”. I thought that that would be my lot for the rest of my days, sitting and talking with my granddaughters while adults sat in the other rooms laughing, telling jokes, and providing insights about national politics. I was reconciled to this fate almost at once, a fate that was sad in some ways. After forty minutes or so Alison joined the other ladies. Jessica took my hand and walked me though the house. She looked at the pictures on our walls and the photos of her and the rest of the family. Jessica asked me questions about some of the people in the photos. She smiled that beautiful wide smile often as she walked with me hand in hand from room to room, not caring whether my speech was fluent or not. She just wanted to walk and talk with her grandpa, me. Quickly, I knew that I wanted this for me for ever, talking, walking, coloring and singing with my granddaughters. How strange was divine intervention or providence? My stroke helped me to understand that my time with Alison and Jessica was more important than the witticisms of politics.

It took me about five months to start to read a kiddie book. I started to read as a child learns to read from the beginning, the two or three word sentences, the ones that they can remember by heart, the repetition from one line to another line, the ones that have the same sounds, roots, hit, bit, fit and kit.

Reading was difficult. It was emotionally draining. It was frustrating. It was physically taxing. It was a solitary act for me. It was a daily litmus test to show myself that I was getting better not just better but “whole”. There were skills that I had to master again. I needed to have the ability to identify the letters of the alphabet. I needed to have the ability to sound out letters in the alphabet. I had to sound out words, letter by letter, until I was able to pronounce the word, reread words over and over and over again and sentences over and over and over again. I needed to read aloud to myself. And I needed to read daily for about two hours, it was a job, a full-time job, to learn to read again, the only successful outcome was to try and try to become a reader.

One of the outcomes of my reading, and that was not even thought of when I first started to read, was to trigger my brain to remember the past and it did. It remembered emotions, events, issues and especially people that I hadn’t thought about for at least six months and maybe for forty years as a result of passages from these books. The more I read the more words became part of my vocabulary, not instantly, but that was how it started. There seemed to be a geometric progression, each word or sentence or paragraph generated at least a couple of new memories with names and bodies attached. The power of the word and the images was clearer to me and the importance of reading was life itself,
as I went through a metamorphosis from a frail anguished stroke victim to a regenerated adult with dignity and self-respect.

To sign up for the newsletter by National Aphasia Associaition (NAA) please Click Here .

Author: John A. Liechty

One week after earning a master’s degree in social work, John Liechty had a ruptured brain aneurysm. Here is his inspiring story of one survivor’s journey of challenges and triumphs as he struggled with his ability to communicate, regain a career and reconnect with himself, friends and God.

This Article was printed in the Journal of Christian Nurses(JCN) and was also featured on the National Aphasia Association (NAA) website.

To view this inspirational story in it’s entirety please Click Here.

Or visit NAA by clicking here .

Author: Jennifer Carnig- staff writer for Alameda Times-Star

AUTHOR Luanna Blagrove wrote 17 books on business, but can’t tell you the titles of any of them. She can’t even tell you her own name.

But don’t let that fool you. At 65, the Berkeley grandmother is still quite coherent — her killer smile, easy laugh and alert brown eyes make that clear. She still goes to church every Sunday and she still plays the piano. She just can’t sing the words to the songs anymore.

Blagrove has aphasia, a disorder you’ve probably never heard of even though more than 1 million Americans suffer from it — more than the number of patients in the United States with multiple sclerosis, muscular dystrophy or Parkinson’s disease.

But because aphasia — pronounced uh-FAY-zhuh — is a communication impairment, Blagrove and others like her can’t tell you about it, even though their levels of intelligence are still intact.

Caused by brain damage — most often from a stroke — aphasia is the name for the brain’s inability to comprehend, read or write. Patients can still speak, but they can no longer access the area of the brain where language is stored. When they want to say something, they don’t know the words anymore.

In Blagrove’s case, a stroke five years ago stopped her from talking to her three children, reading the newspaper and writing letters.

But it hasn’t stopped her from living.

Blagrove found support from the Aphasia Center of California, an Oakland-based nonprofit that provides therapy and companionship to those who have lost some or all of their ability to speak and comprehend their native language.

“Aphasia is like being dropped in Bulgaria — you’re still intelligent, you just can’t communicate because you don’t know the language,” explains Dr. Roberta Elman, the president of the center and a speech-language pathologist.

Elman opened the center seven years ago after discovering that group treatment produces major results in reducing aphasia’s effects. Now, under the leadership of Elman and two other speech therapists, nine groups of eight to 12 people meet regularly to work on their communication skills. The center also runs a book club — with the help of books on tape and accompanying large print books — and offers classes on surfing the Internet, fitness and art.

“Aphasia is very isolating,” Elman says, explaining that insurance rarely covers speech therapy in cases of aphasia. “So what tends to happen is that the patient gets discharged and goes home and sits in front of the TV set since they can’t communicate with their friends and family anymore. They’re virtually shut off from the outside world.”

But not for aphasia patients from any of the Bay Area’s nine counties. Here they can attend low-cost group therapy sessions that help them improve their communication skills while having a lot of fun.

The support group atmosphere allows those with aphasia the chance to speak up without fear of embarrassment, and make friends and laugh as they gain self-confidence. At a recent Tuesday afternoon meeting, participants were cracking each other up as they discussed current events, the quality of ribs at a local barbecue restaurant, prostate health and summer vacations.

The laughs came easy and quick as the group communicated what they’ve been up to lately.

Blagrove, who has a severe form of aphasia, answers Elman’s questions about the last church service she attended using a card bearing the numbers one through 10, a rating system with 10 being the best.

Elman asks how the sermon was. Blagrove points to a six.

“It’s usually a nine,” Elman says. “What happened?”

Blagrove closes her eyes and pretends to sleep.

“You fell asleep?” an astonished Elman asks. Blagrove shrugs her shoulders and reveals a sheepish smile. The group howls with laughter.

Philip Tien, a 49-year-old San Francisco resident who had a stroke four years ago, can say some words and phrases but forgets others. To describe where he’s been the past three weeks, he uses a map to point to New York City and Los Angeles. He loved New York’s Metropolitan Museum of Art, but can’t remember the name and says “statues” instead.

And how was it?

“Marvelous! Man, this is just marvelous!” he says, laughing, demonstrating how impressed he was with the art museum’s massive sculpture collection.

Alameda resident Jimmy Santanna, 60, who had a stroke five years ago, asks Tien if he saw the Statue of Liberty by saying “statue France,” and holding his arm in the sky as if he held a torch.

“Marvelous!” Tien answers again, laughing even more.

Oakland resident David Rose, 41, had a stroke three years ago that left him virtually unable to speak. He has since married, and his wife, Kathryn, is expecting the couple’s first child. He shows the group an abstract red and green pastel drawing he made of his pregnant wife in one of the Aphasia Center’s art classes.

To explain what the picture is, he says “baby” and puts his hand on his heart and closes his eyes, with a smile that only an expectant father can wear.

“A boy or a girl?” asks Bill Wong, a 41-year-old stroke survivor from Oakland.

Rose makes a muscle to show that he’s expecting a son. He then writes “October” to show when the boy is due.

Elman, or “Bob” as the group calls her — “They can’t say Roberta,” she explains with a smile — leads the banter for the next 11/2 hours, the group in hysterics at least half the time.

“The goal is to help them take back their lives and their independence,” Elman says. “It’s important to have a place where you can come where you know people will understand you. For some of them, this might be the only place where that happens. And that’s an invaluable service. Because it reminds them their lives didn’t end with the stroke. … There’s still a lot of life left to be lived.”

First Written by Alameda Times-Star; by Jennifer Carnig

For more information on aphasia or on the Aphasia Center of California, call (510) 336-0112 or visit www.aphasiacenter.org.

Author: Sharon Leitheiser

I am a Stroke Survivor. In August of 1996, I had a hemorrhagic stroke - a “bleeder” - when I was 49. In my case, they did not know what hadcaused it. My husband and I were in the car - he was driving, thank-goodness - and a blood vessel deep within my brain ruptured. I have no memory past that occurance. I don’t recall going to the hospital, surgery, and very little of the hospital. My speech area was damaged. I have aphasia. I lost my career as an elementary teacher. I had what they call a near-death experience, which is another strory in itself.

My recovery will be a forever journey, but I am doing it, because I am a SURVIVOR! Five years ago, I scribbled when trying to write. It was difficult to understand what was being said. I have anomia. Think about how had to recall. I have what you might call a “tip-of-the-tongue” effect. I go to say a word and will not be able to get it out. I’ve taught myself how to associate words within words to get the whole word out. For example, I think of “apple” when trying to say the word “ap” - titude. My brain is always on stage in my brain. I write down words over and over again. I have tons of various types of dictionary books around me.

Here are some of the things I have done in order to improve my communication skills: I took 2 children’s writing classes through correspondence and am now in the process of marketing my stories; I joined Toastmasters (a public speaking club) to improve my expressive language and am now a CTM Toastmaster; my husband and I belong to a stroke group in Seattle; and this last year I did a fundraising event for the first American Stroke Association here in Seattle and went to Jamaica for a marathon. I attempted to walk the full marathon, but only finished 16 miles due to the heat. Now I am just finishing the training for the TTES marathon in Vancouver, Canada. I just did my 20 miles. I am one of the Stroke Heros. I have spoken at some of their fun rallies.

I have walked through that deep valley of severe depression - - plus going through menopause at the same time! I am taking medication for some things and have learned to read and write through through the rest. I have saved my writings and poems, because some day I will write my story. I, also, belong to a Writing Group.

I have learned to love the new me. I am stronger than before. I’ve been blessed. I have learned so much from this experience. I try to help others. I try to be thankful for everything that I have. For there is a “Highter Power” who never leaves us. We just need to believe.

Have a great day!

Sharon

A Caregiver’s Story

Author: Betty Sutliff, Caregiver

The following Article is from the July/August 2006 issue of Stroke Connection Magazine, an affiliate of the American Stroke Association:

My husband Earl is a three-year stroke survivor

He spent a month at the veteran’s hospital in Iowa City, Iowa, and was then transferred to the veteran’s rehabilitation center in Knoxville, Iowa, where he received remarkable care and physical therapy. His five months there had a profound affect on our lives.

When a close family member has a stroke, the entire family also suffers stroke, especially if the spouse or the child becomes a caregiver. It changes life forever and sometimes, depending on the severity, that change is radical. In our case, it was a radical change because Earl had a complete right front lobectomy.

Our personal relationship with each other has been altered. Every other relationship is changed as well. Not one thing is the same. Now he lives his life from a wheelchair.

He is unable to roll over or stand or sit up on his own. Speaking is limited, as is writing. Incontinence is a constant frustration, and if not handled carefully, it becomes a dignity issue, adding to the depression that accompanies stroke. Fatigue is something he lives with daily.

Some people in this circumstance have the resources that allow them to hire help, travel, join a health club for therapy and attend social events. But I would guess most stroke families are like us, living on a limited income. What savings we had are gone, and we live on Social Security. I do receive some extra because I am my husband’s primary caregiver, but our budget does not allow for extras, even something as important as health insurance for me.

Our family has been very supportive, and at the time Earl was hospitalized, they sacrificed time with their families to be with us. But life is demanding, and children and jobs need them. We are at the point now where we try to depend on family less and less and rely more on friends for mental and social support, as well as several agencies for respite time.

My advice to anyone living this new and trying life is this: Don’t be proud, let people help you. They get pleasure feeling that they are being useful. Often people offer to help, but we don’t take them up on that offer. We just need to forget our pride and accept their help.

Another thing, do not neglect your spirit. If attending church is out of the question, as it is for us, find a channel on TV or a station on the radio and attend church that way. Our church has a program where volunteers deliver a tape of the service to us each week.

To get a copy of the complete article in this informative issue of Stroke Connection Magazine or sign up to get a free subscription, please, Click Here.

Author: JackQue Day

Dear Aphasia Hope Foundation,

I am writing you at the encouragement of Roger Ross who is a local leader that brings people together for aphasia and stroke groups.

My name is JackQue Day and four years ago I had a massive stroke and lost everything except life itself. I had to learn everything all over again; how to walk, talk, read, and write. I was global aphasic so I had to start at the very beginning like a child. It took lots of effort before I began to regain my comprehension. I didn’t know my left from my right for the longest time. I didn’t have a clue where north or south was; I could even get lost in my own backyard.

I could have wallowed in my own pity, yet instead of feeling sorry for myself, I decided to focus on getting well. I enrolled into the speech clinic at Arizona State University and for the next three years I began to relearn everything. Even though I still have a long way to go, I have made great strides in my recovery.

Somewhere along the way I began to write down my experiences. I found the humor in my situation and wrote a book entitled, “Oh My Gosh! I Had A Stroke!” Even though I have not found a publisher yet it has been the greatest therapy for me to write it all down and look back at how far I’ve come.

After the book was finished, I wrote two booklets, one for the stroke survivor and the other for the family, friends, and caregivers. Each booklet is self published, and is about 50 pages long with lots of illustrations and cartoons.

Everyone who has seen the booklets have loved them because for the first time they are reading about a stroke from a stroke survivor’s perspective. They are also very helpful for stroke survivors because they contain valuable information about living with aphasia, and recovering from a stroke. They are also very valuable to the caregivers and clinicians that work with stroke survivors.

God has given me another chance at life, so the least I can do is make my life worthwhile by making a small difference in the lives of those who have been touched by aphasia and stroke.

I know that these booklets can help many people. I am asking if you will review the booklets and include them in any of your foundation’s publications. That way more people will have an opportunity to benefit by knowing about them.

Author: Jon Caswell for Stroke Connection Magazine

Ruth had tried acupuncture in the United States with limited results, but “after my first treatment in China, my little finger felt normal for the first time since the stroke. Within 10 days I regained some degree of feeling in my entire right side. Things would go from no feeling, to intense pain, to weighty feeling, to normal.

“When feeling began to return, I was like a kid in a candy shop,” said Ruth. “I would reach out and touch the wall, feel the bumps or the crack where the paint came together. It was remarkable to me.”

To read the article in the Stroke Connection Magazine, please Click here.

Author: Judith Russo

I received a birthday wish from The Aphasia Hope Foundation. What a delightful surprise. The question was asked “If I could have my wish, what would it be?” My answer was, “surely a little more time with my aphasic husband. A little more time to help.

Speech therapy was used from the onset of the stroke. But soon the health benefit ran out and we were on our own. I made a picture book for Hank and put his face on a drawing of a physique “hunk!” That way he could point to what part of his body hurt, or felt numb or was uncomfortable. I put pictures of his children and grandchildren, and we talked of them often, saying their name over and over. The grocery store, movie theatre, church, anything/place that would be somewhere he would want to go that he could point to. I was very firm with our grown children and told them to call Hank EVERY Night and talk to him. One son needed to hear his dad say “I love you” and so he would teach him over the phone over and over to say those precious words. They became part of his newly re-learned vocabulary. Hank insisted on driving. I got the program from Bungalow Software.Com about recognizing the traffic signals. He worked very diligently with that one. I also enrolled Hank in a Speech Therapy Clinic associated with Communication disorders at the University of Rhode Island. Budding graduate student speech therapists would work with stroke/brain disorders and there Hank was put into a small group of men who had the same disability as he. I would be happy to discuss this with anyone who would like to email me. Singing, for some reason, is not the same as talking. I gave Hank some songs from the 1950″s on cassette tapes which he loved, and I encouraged him to sing along with them. He did quite well. These are only a few of the many things we did. They Worked!!!

Author: Brain and Spine Foundation Online

The following is from The Brain and Spine Foundation Online. This is a good source for many topics having to do with Aphasia. Go to their website at brainandspine.org.uk.

It can be helpful to the person with aphasia and their family and friends to hear about other people’s experiences. This can help people realise that they are not alone. A number of charities produce newsletters in which people write about their experiences, and they also provide opportunities to meet others in a similar position. A number of excellent books have been written which are listed under Further reading. The following extracts are taken from some of these books.

Barbara Newborn felt that her aphasia affected her ‘whole social and emotional well-being’. Another person with aphasia says:

‘There were times, particularly in the early stages, when I was in hospital, that I wanted to give up. I was very depressed; I cried into myself when it was dark and no one could see me’. He reports that ‘even when I was improving I felt like chucking it in’. Now however he is glad that he persevered. ‘We got a dog (we got her about six months after my operation) and she makes me go out in all kinds of weather…I’ve been on a camping holiday to France. I go shopping on my own, coping with the buses, swing doors and shop assistants!..On the whole I’ve learnt to come to terms with myself. Everyone deserves the chance to be accepted for themselves’.

In this extract from her poem, Teresa Middleton demonstrates the power of aphasic language:

‘Gaps where words should be. And wrongs tensed.
Senses back to front and puzzles expressions
trying to understand my thoughts….thoughts
clear as bells but come out so muffled and jangled.’

The experience of aphasia from the other side must not be forgotten. Many people’s lives are turned upside down by their partner’s aphasia. Monica Clark recounts:

‘I didn’t think of myself for the first year….It was only one year later at a carers’ group when I suddenly realised all of us were only talking about our partners and we needed to be reminded to talk about ourselves’.

Monica is now hoping to start a pen club to enable the carers of people with aphasia to support each other (contact via Action for Dysphasic Adults - see under Other organisations that may be able to help).

A healthy balance of acknowledgement of the problems alongside adjustment to the future is expressed in the following description:

‘I think it would be wrong to deny the sadness, and it would be wrong to deny the frustration. But…we have a choice here. We can either spend our days looking back on all the things we can’t do any more, or we can say, okay, this has happened, it’s a rotten thing to have happened but our family is important; what can we do together?’

for this and other information, please Click Here.