Browsing Posts in Experiences

DRIVING AGAIN!

We are so proud of John for many reasons, but the newest is that he persevered and is now driving after not driving for six years. After John’s stroke in June 1995, he had a grand mal seizure about six months later leaving him with 2-minute seizures. Even though we began taking anti-seizure medicine, it would not control his 2-minute seizures. Therefore, he was unable to drive because of not knowing when a seizure would occur. However, about two years ago our doctor, Dr. Dostrow, changed his medicine. It seemed to control his seizures—he has not had any more! Therefore, John began wondering if he could now drive. After checking with the Kansas driving department, we found out that he had to be seizure free for six months. Therefore, after six months our neurologist said that John should go to The Rehabilitation Institute of Kansas City to be tested on his reflexes and his cognitive skills. Before we could begin this program, we had to have a letter from his doctor saying that he recommended John to begin his evaluation.
These are the steps we had to do in order for John to be able to drive again:

1. A written letter from your doctor.
2. Take the written test at the Kansas Driving License Department. (You can have an oral test if requested.)
3. Find a Rehabilitation Institute which has an “Automobility Driver’s Education Program”. This program will assist disabled individuals in resuming or learning to drive independently. The program consists of three broad phases: evaluation, equipment procurement and modification of your vehicle, and behind-the-wheel training. Our program cost us $410.00 for the evaluation. Some was covered by our insurance. The actual driving cost around $55.00 an hour and depends on the necessary hours they think you need to be safe and to be able to pass the driving test.
4. John had to take 10 hours of driving time.
5. Had to have a left foot gas pedal installed from the Handicap Conversions, Inc.in Kansas City. (Total cost: $276.25)
6. Went back to Kansas Driving License for final driving test.

John has never been this proud of an accomplishment as he is with having his driving license again. It means so much more independence for John. The first thing he did was to tell me the next day, “Judi, you stay home; I go to the movie!”

As you can see, this procedure took a little time for John to be a driver again; but it was worth every minute of it!

Darryl W. Moulder was born in Jackson, Mississippi. He was raised in Greenville, Mississippi (among many places) as the oldest of three sons. He completed high school at Riverside High School and went on to become a paramedic and Training Chief at the Greenville Fire Department. He worked for 22 years at The Greenville Fire Department. The priority in Darryl’s life is and was serving the Lord and being an amazing husband and father. Darryl also enjoys riding his motorcycle with friends, playing the drums, paintball, wakeboarding, and traveling.

On April 16, 2011, it seemed like a normal Saturday afternoon. Darryl and his wife, Mary, were out in the backyard playing with their children, Dawson Taylor (4) and Madelyn (1), when Darryl began staring off and was instantly unable to speak. He was rushed to the local hospital, where they were not equipped to deal with the situation. Within minutes, Darryl was paralyzed on his right side and remained unable to speak. He was then transported to Jackson, MS. The doctors explained how extremely serious Darryl’s condition was and they did not express much hope for the upcoming days; however, God is in control.

Darryl, at the young age of 39, had a massive stroke. He was diagnosed with a blood disorder. As the days passed, the doctors were amazed at what they saw. Darryl was regaining use of his right leg and gaining feeling in his right fingers.
Darryl is currently recovering at home, after three weeks at Methodist Rehabilitation in Jackson, MS. Thanks to the speech therapy and Darryl’s hard work in and out of therapy, he can now say his family members’ names and many other words if he is given verbal cues. Darryl puts 110% in all the time. Everyday is now a challenge and not very much is taken for granted. Doctors and therapists assure him that this will be a very long and challenging road for Darryl and his family. Darryl currently attends speech and occupational therapy at an outpatient facility.

From The National Stroke Association Lenice Hogan, 46, has won the identity crisis facing many stroke survivors who are progressing through recovery. “I spent two years as a victim,” says Hogan, a Faces of Stroke Ambassador, “but have definitely moved to survivor.” Hogan is a survivor of not one stroke, but three, all at young ages. She survived hemorrhagic strokes at the ages of 26, 38 and 39. Only the third was actually recognized as stroke—the first two went undiagnosed or misdiagnosed.
Read more of Lenice’s and other’s stories

Paul Berger shares:

I understand numbers and can read them, but it is hard for me “catch” them when spoken. For example, if you tell me your phone number, I may only get half the numbers. But if you write it down, I will be able to call you. My speech therapists explain that this is part of my stroke-related aphasia, a problem with processing the words.

Before my stroke, I never realized how much our daily conversation uses numbers, numbers, numbers! The cost of things, the weather forecast, the time of an appointment, the date to meet for lunch, and the score and plays in a baseball or football game.

I try to practice every day to improve my ability to catch numbers:

* I listen to the weather forecast and the stock market numbers (the Dow Jones) on the radio in the
car. I try to remember the numbers. Then when I return, I check the numbers on the computer or TV.

* When I’m watching TV with Stephanie, and I hear numbers, I’ll write them down and ask her if I’m
correct.

* Recently, I was in a local government office where you take a number and wait your turn. The
number board was not working, so I asked the person sitting next to me to help me listen for my
number. I was anxious while I waited, and happy that I heard my number correctly when they called it.

Many stroke and aphasia groups play “Bingo” — also a good way to practice listening for numbers.

If I can do it, you can do it too!

Other insights and tips for coping with life and taking control of your recovery after stroke are available on my website Stroke Survivor .

I had a massive stroke when I was ten years old. I was living in Ohio and came to Las Vegas with my family. The trip was supposed to be 3 days, but I got home nearly 3 months later. This is my story of how I overcame many challenges over the last fifteen years so I could live a “normal” life again. Hear from David by visiting youtube .

Before my stroke I was active, outgoing, and had lots of friends. I loved school and was in the gifted program.

On the first day in Las Vegas I wasn’t feeling well. My mom and I stayed back at the hotel while the others went to Zion National Park.

Shortly after they left, I had my stroke. I ended up in the Intensive Care Unit and couldn’t talk, read, write, or even understand. My entire right side was paralyzed. I couldn’t walk and even swallowing food was hard. I had some seizures.

I had to have two brain surgeries because of a vascular problem that caused my stroke. Once I stabilized, the hard work of rehab began.

After nearly 3 months of rehab, I was finally able to go back to school. I was so excited!! But, most of the teachers and my friends didn’t really understand what I was going through. I was now in a wheelchair and couldn’t talk due to my aphasia. Aphasia is the disability that affected my speaking, reading, and even writing. Aphasia does not affect intellect.

I was so frustrated. Everyone treated me differently. I felt lonely, sad, and really angry. I knew inside that I had to fight to get better.

I progressed in rehab. I learned how to use my left hand for everything. (I’d been right handed) I went from the wheelchair, to walker, to cane, to walking by myself.

My aphasia was my biggest problem. I went to lots of speech therapy and my mom worked with me and she hired others to help me too. Finally, I was able to talk again – starting with just single words

It’s now been 15 years since my stroke. I am now 25. I’ve had years and years of speech therapy and can now speak quite well. I can read and write again. I’m walking. Things aren’t as easy as before, but I live independently and strive to live a “normal” life.

“You need to do what needs to be done, whether you feel like it or not.”

I will never give up. I still go to rehab in Henderson, NV where my family has moved to. I attend a stroke support group and joined in an aquatic swim class for survivors. I work out at the gym.

My hobbies are going to the movies, playing the Nintendo Wii as part of my therapy, and traveling. My family even organized a stroke cruise a few years ago. I went on a trip to Europe this past year by myself. For me, traveling is a good way to challenge myself and enjoy life again.

I’d like to share my thoughts on achieving goals. Stimulating the mind is important. I had lots of therapy. I was not allowed to sit in front of the TV all day. I kept busy with learning how to grow a garden, learning to watercolor paint, use educational games on the computer and more.

I believe it is impossible to recover by lying in your bed all day as you won’t accomplish anything. You have to make an effort.

It is very hard work to be faced with a disability and rehab. Everything changes. It affects you emotionally, physically, and your goals can change.

Coping with this new disability is rough and it affects the people who love you too. But, eventually you will get it. Patience is important, very important.

I couldn’t even talk, play soccer, or even hang out with my friends. My life had totally changed. Sometimes, I felt sad and even angry. I think it is normal to show your emotions as it’s part of the healing process.

I think having faith is crucial too. You have to believe that you will get better. It takes a strong desire to recover and work hard on it so you can. There are many obstacles, but you have to believe you can face them to overcome them.

I often had failed attempts at things I tried. But, I tried again and again. When you put your mind to it, you can go far.

I think it is important to focus on what I can do, not on what I can not. I still have some paralysis on my right side with my hand, ankle, and toes. I can drive and I walk without a cane. I talk, read, and write again. It isn’t as easy as before.

No two strokes are alike. No two recoveries will be the same. But we all must find the motivation and courage to keep trying. There will be times you want to quit. But, you must fight to overcome the down days. You have to do what needs to be done whether you feel like it or not.

My goals have changed.   I wanted to be a doctor like my dad.  I think I would have been a great doctor.  But, I can still help people.  I want to encourage and help others with stroke and aphasia.  I can still make a difference.  My stroke can’t take that away from me. 

Stroke survivor David Dow has appeared in People magazine, Stroke Connection Magazine, and on Good Morning America, It’s a Miracle, Hour of Power, as well as several regional televisions spots on stroke and aphasia. David was named to the Ohio Governor’s Council on People with Disabilities. He has received an award from the Ohio Speech Hearing Association for his work on raising awareness for people with aphasia. Currently, David is working with the American Stroke Association planning a Stroke Cruise for 2011. David lives in Henderson, Nevada.
Email: theaphasiafamily@aol.com Phone: 702-982-3075

Speak No Evil

Two articles posted in Stroke Net newsletters under the title of Speak No Evil, written by Erin and JJ Robertson.

JJ had a stroke in February 2009. Erin is his wife and caregiver. JJ’s primary residual from the stroke is aphasia. In this column they share their stroke experiences.

Click on Aphasia Comes to Roost and Emotions and Stroke

Managing Your Energy

An article in the StrokeNet newsletter “Fuel for the Journey” by Lin Mouat

Managing Your Energy

I used to be able to force myself to do more than my body allowed. In the past, I’ve often pushed to the point of feeling sick – something I wouldn’t recommend. I got away with overdoing for many years, until, over a period of time, physical ailments assailed me - each one depleting me more.

By the time I had bilateral strokes, I was already struggling with the affects of Fibromyalgia, and the strokes pretty much drained my energy.

A few of the things that can affect our energy are:
• Medications
• Physical difficulties
• Age
• Level of activity, which for many of us can be dictated by our physical and pain issues
• Lack of sleep. I think that sleep patterns is an individual thing.
• Attitude.

Click on StrokeNetwork to read more

Author: Paul R. Rao

I was recently appointed to the Board of the National Aphasia Association (NAA), which prompts me to share a rather unique experience surrounding the aura of “aphasia.”

On the day last spring when the NAA’s annual gala was held in New York City, my wife, Martina, and I took a train to New York and arrived around lunch time. We had time to kill before the gala so we ambled around Bryant Park, right behind the New York Public Library. In the middle of the park was a large white tent. Inside was a treasure trove of books. The Academy of American Poets was giving away free volumes of poetry in recognition of National Poetry Month.

Not being much of an aficionado of poetry, I selected the thinnest volume, The Long Meadow by Vijay Seshadri, as my book of poetry. I randomly opened the book to a poem. There, on page 26, was a poem entitled “Aphasia.” Martina and I looked at each other with incredulity and an eerie feeling that a “Broca” spirit was channeling me to that page. What are the odds that considering all of the many volumes of poetry under the big tent that there would be even one tiny poem on aphasia? Miraculously, hours before the gala to celebrate the victory of the human spirit in coping with aphasia, I was given a gift of poetry that so deftly captures the essence of fluent aphasia.

His signs flick off.
His names of birds
and his beautiful words—
eleemosynary, fir, cinerarium, reckless—
skip like pearls from a snapped necklace
scattering over linoleum.

His thinking won’t
venture out of his mouth.
His grammar heads south.
Pathetic his subjunctives; just as pathetic
his mangling the emphatic enclitic
he once was the master of.

Still, all in all, he has
his inner weather of pure meaning,
though the wind is keening
through his Alps and his clouds hang low
and the forecast is “Rain mixed with snow,
heavy at times.”

(Reprinted from The Long Meadow, Graywolf Press, 2004; this poem first appeared in The New Yorker.)

To read the complete article including the Poem entitled: “Aphasia”, please Click Here.

Tools of the Thoughts

Author: David Douglas Allard

Tools of the Thoughts

Quit is a word that never entered my mind when I had to start a new beginning. I was without words to match my feelings; words were a mystery to me. It was a very different feeling, as it was difficult to let the words out. It was important to let people know that I could say the things inside of me. I just couldn’t get the words out of my mouth to the rest of the world. It was like hibernation. But I did not give up. I was 24 years old when my speaking skills were damaged from the stroke. It was like an invisible wall was keeping me from being able to communicate. I had to find a way to unlock these magical words from behind that wall. I am picking up the pieces and climbing over this invisible wall.

Speaking and understanding language was strenuous. At that time, when somebody interrupted me, it was like some kind of terrible madness had crossed my pathway, and made the thoughts and ideas and words spin in circles. I was exhausted and useless. Yet I did not give up!

I was living in a world in which my wounded mind and words were not clear. It’s painful not to have that gift and, of course, I shed tears knowing that I could not imagine getting better. When my friends came over to see me and they saw me with tubes attached to my body they smiled. I smiled back. They reminded me that they still held a place for me in their heart and souls. They started to talk. I listened but I could not follow them. I had to say something but no matter how I tried the words just would not come, so I curled back and listened quietly.
That is how I came to understand my own life better. In the end, I have come out a survivor. I can relearn conversation skills that touch every person who is listens to me. You can do it. I did it!

David Douglas Allard
P.O. Box 417
Keswick, Va 22947
1-434-979-1109

Author: J. Ellen Fedder

Read More .