Thursday, November 16, 2017

Survivors with Movement by Randy

The biggest thing that works for me is helping other new friends that are also survivors. Now after six years from my stroke I now have become a Stroke Survivor Coach. As a coach I work on memory as well as writing, reading, speaking and using movement. This not only is for my new friends, it helps me as well. As survivors teaching is a way of life as well as a way of relearning.

As survivors relearning is a challenge. We work on our recovery everyday. Many of us have had to relearn everything. As hard as it is, young and old survivors keep moving. Everything that has happened to me from my stroke is about my new life. After having a brain injury we do not give up! 

One of the best ways to improve our memory is with movement. Exercise is a great way to work on our memory. There are instructor led in person exercise classes as well as online videos. YouTube and Facebook videos are great resources. 


A lot of these videos have been made on a Facebook page called Stroke Survivor Fitness. There are many people that have been working hard with their movement and memory. Watch them and let us know what you think. We are always open to feedback!

Here are several links that are important.

www.randykernus.com

Stroke Survivor Fitness:
www.facebook.com/strokesurvivorfitness/
Aphasia Paracord Projects Facebook Group:
https://www.facebook.com/aphasiaparacordprojects/
Aphasia Will Not Be Silent Facebook Group: https://www.facebook.com/groups/610071952466639/?ref=bookmarks

 

Wednesday, November 8, 2017

Perry's Road Trip, Part 1

I rented an RV with room for my dog and me, sleeping and toilet and kitchen.



Wed -  9/13 

I drove to POA (Pennsylvania ….) Turnpike, police turned  on the lights. I pulled car over.  My speech was like stuttering sometimes and I sometimes had eye contact for officer. The cop said drunk. My stroke, and aphasia card from wallet: “Communication.  I have aphasia a communication impairment.  My intelligence is intact.  I am not drunk, retarded, or mentally unstable.”  Police read (I saw “I am not drunk”) and laughed.  Police car looked in my car, and said “Yes, not arrested”  I drove on.  No cop ticket, thanks to aphasia card in my wallet!!
 
Flight 93 National Memorial – 9/11 was plane.  The museum is where flight and plane crashed.  There is a path. I walked to flight.



Pittsburgh – Primanti Brothers can eat.  I watch the Food Network, and they said Pittsburgh Primanti Brothers can eat.  Peoples and I were taking photos.  A famous personality can stop by, and I was not stopped.


Home? – I see the big city. I don't want to live there.  Pittsburgh, Pa not was stinky..

9/14 – Canton, Ohio
 
NFL Hall of Fame – I am at NFL Hall of Fame, and too many Redskins – like Joe Gibbs, John Riggins, Russ Grimm, and etc.  NFL Hall of Fame was disorganized. 
 
 
 
Home? --- I see the small city, and  is clean the Canton, Ohio.
 
9/15 – Cleveland, Ohio
 
Rock n Roll Museum – I will love the Museum.  The DJ radio was “rock and roll”, and here is city.  The museum is fun!! The museum is organized, and 5 floors to walk across.   
 
 
 
Home? – I see the city, and home is Cleveland, Ohio.  Cleveland was sunny and 70s weather. Soon Cleveland weather, snow and cold. I don't like cold outside.
 
9/16 – Dayton, Ohio
 
National Museum of the US Air Force - They have plane F-15E front yard. (I am computer graduate works F-15 in “E” fly flight, and Ada is computer programming.  But Ada is great large memory, and project can few memory – failure.)

 
They have 4 hangers, and it longer walking.  It has flight, and beginning and now future.  I had fun!!
 
Home? – I see the city, and I not do live Dayton, Ohio.

9/17 Indianapolis, Indiana
 
Indianapolis Motor Speedway – A huge speedway!! It see speedway museum, and under the speedway is a path to drive and park.  The museum had older cars and present cars.  I had fun!!


 
Home? – I like the city, and home is Indianapolis, Indiana – maybe.
 
9/18 – Chicago, Illinois
 
… to be continued ….

Tuesday, October 31, 2017

Sandpad Beach Crutch by Christie

Wouldn't it be nice to be able to walk on the beach without a person holding your hand down to the ocean?  Well, I found a solution. It's called Sandpad for people with a disability or a person with crutches. It is a stabilizer for people who have trouble walking in the sand. You attach it on the end of your cane. 
 
In Nags Head, the beach where we stayed was very wide and far away from the ocean. It was difficult to walk on my own without help. Now I am happy to report that I will never leave home without it when I travel with sand.  It also has the ability to be used on snow or ice. Here comes winter because I am ready!

Here is a video where I walked down to the ocean. 

 

The link if you would like more information: http://www.thesandpad.com/howtobuy.php

Thursday, October 26, 2017

Stroke Survivors Live Life by Randy

Survivors that live life after having strokes. It is amazing to understand and learn how life changes after a stroke. Recovery is how it works.
 
Often there is permanent changes as a result of a stroke. My permanent change is having aphasia. By the way let us know if you have aphasia. If you have aphasia it is a language disability. This disability sucks! It breaks us. It challenges us. It takes our words. The most important part of it is our memory is still intact. We now what to say but much of it does not come out correctly.

As the years have passed from my stroke then and now, life does change and it gets better. Believe it or not many of us struggle every day with having aphasia, but we never give up.
 
The struggling with words, it is because my letters are jumbled. For instance a five letter word one to two of the letters are correct however the last 3 letters get jumbled. This is why it is difficult to get the words out. Some times it is like playing charades. I will say it starts with an S and that is as far as I can go with saying the word but in my brain I know the word is Seat. That is just an example of what living with aphasia it like.
 
Fortunately my wife likes to play games so we never give up!!

Tuesday, July 18, 2017

Stroke is Life Changing by Perry

Stroke is life-changing. 

Right Leg: I drive with my right leg on the gas pedal - no pressure off and on, no feeling on right leg.   When I drive, pressure off and on gas, I start and stop – next period … quick … quickly stop…. Quickly….

(My memories:  The 2 daughters in car seats, their hands holding on the car, and bounce and stop drive --- I had no pressure in right leg).   I walked, like ankle had heavy ball on right leg.  I am sorry!! I felt no pressure right leg!)

Right Arm:  I am typing and write, speech therapists made me practice using my right arm, and it frustrated me!! (it matters, thank you all therapists!)  Fingers can not feel.  My fingers can work a screwdriver and button on/off, small things my daughters help me.  

Brain:  I am thinking brain: “1 + 1. (no answer!! next question) I watch TV, space ship next launch.  I enjoy computer science, programming … what do I do?  (no answer) ….. I eat next dinner? …. I can play racquetball… I can go to restaurants….“  At night, at bedtime, and I want to sleep.  But brain is thinking, and brain can’t sleep!!

I bought sleeping pill (Costco), and I take 10-15 pills at night.  It takes 1 hours, and I am sleeping.  Prior nights, the sleep was 2-3 am, and I was awake.  I had an appointment with sleep doctor, and she said it is sleep apnea (?).  Do you do recommend stroke & sleep doctors to help with sleep?

Stroke is life-changing.

Wednesday, July 5, 2017

10 Years Alive by Pat


It happened 10 years ago. My wife believed in me. She showed up to Bethesda, MD. She told me that I would make it. She flew from Seattle, Washington to Ronald Reagan Airport in D.C. She got there in the morning of Monday July 9, 2007.

My family, friends, nurses and doctors all said it was bad. This one doctor said I would be dead in a week. The nurses were good. This other doctor came to see me in the morning and at night. He was very good. I don’t remember, I was in a coma for 4 weeks.

I landed at Joint Base Andrews, AF, MD. On the way we stopped in Landstuhl, AF in Germany. I did a “tail to tail.” I was there for an hour. I had come from Balad, Iraq. They did my surgery there took 8 or 10 hours. Before I was in a helicopter from Baghdad.

When you get hurt you have one hour to live. My Thunder soldiers did fantastic!

We were in Dora, Baghdad. I had a new job for the last two months. We always went out at night to make sure we found the bad ones who were setting explosives for the next day.  That night, I had about 10 soldiers along side me on a rooftop. About 10 houses away there were 10 more soldiers from my unit. After a couple of hours we wanted to get water for the soldiers. Two soldiers were going to go to the Stryker, so I decided to go with them.

That day was July 7, 2007. It was in the middle of the night.

The first guys had moved across the roof and were going down the stairs. I was heading to the stairs on the second house and somebody shot me in the left temporal skull. I passed out right away. Two of my soldiers ran over to see what I was doing. They saw that I was passed out. It took four soldiers to dragged me downstairs and put me in to a Stryker. I went to the hospital right away.

I lived. They were so professional. And I will never be the same. My life is differently now. But I can't complain…

If you ever run into these people, give them a hug for me!

Kevin DaGraca, Larry Forrest, Frankie Vasquez, Manykhamph Douangmala, Timothy Antinick, Robert Buller, Jonathan Byerly, Ho Lee, Clayton Kline, Daniel Ward, Phillip Hoss, Daniel Iovine, Erickson Hooper, Sean Burnett, John Kennedy, Garret Meadows, Jeremy Woodard, Jose Alvarez, Jeremy Pattman, Lance Holtgeerts, Chris Kay, Clifford Mills, Jack McClernon, Brian Hux, Todd Tasco, Brandon Kinton, Travis Sparr, Taire Smith, Mathew Sukovieh and Doc Kevin McCulley

RIP Matthew Attalai (Afghanistan 2010)

Tuesday, June 6, 2017

How I DO MORE by Christie, Denise, and Perry








Volunteering by Christie

I give back to the Center by volunteering one day a week. I have volunteered for many years and I truly enjoy having a purpose in life. In the beginning, I felt overwhelmed with remembering tasks and issues with memory and my confidence suffered because of it.  Now, I have dealt with strategies that work and my confidence has flourished. My day usually consists of helping a mentee learn how to navigate the computer, making birthday cards for the members and brewing the coffee.
 
I also volunteer to host a golf event called the Kalikie Classic.  The founding fathers and I have been hosting it for 10 years. In the beginning, the founding fathers helped with different tasks because I was forgetful with remembering these tasks. Now, I have learned so much and by memory is better as long as I write them down. I am excited to celebrate this year for my 10 anniversary of my stroke and hosting the 10th Annual Kalikie Classic together. The date is set for September 13, 2017 at Raspberry Falls Golf Club.  If you are interested, please email me at kalikieclassic@gmail.com. 
 
All of these things are why I love the Center because they help us learn how to deal with different tasks. So, please join us in raising funds to support the Center by donating $24 or more to Do Make 24 on June 8th.
 
Tech Support by Denise

I have lived for six years without understanding how to speak. Now I can use the language much better. It is useful in my writing and reading.  Today I am able to understand the words that I use.  The words can be found to state my thoughts.  I make the best use of English in all aspects.
 
At Stroke Comeback Center I learned how to use an iPhone. I find that to be particularly useful when listening to books. Audiobooks are of great use to me. When  I  have the ideas for using  the words, I write them. I can read and send these as email and text messages. Finally, there is usage of the  telephone in sending and receiving calls.
I feel that I am making  progress. I will  continue my work with your help. Please consider giving at least $24 on June 8th.


24 Hours by Perry
 
Please $24 benefit for Stroke Comeback Center.
 
I am thankful for therapists…. 1 class for now. Thank you therapists!!
 
I can read e-mails, understand and learn emails and type e-mails.  I can understand and learn, I can read the books.  Stroke Comeback Center is good.
 
I have telephone (speech, listening, dial numbers), and Stroke Comeback Center is good.  I have telephone - talking receptionist at doctor, dentist, electrician, air conditioner, plumbing and utilities.  Stroke Comeback Center is good.
 
I go out restaurants, eat and talk to waitresses.  I have forks and knives and napkins and soda, I can talk to the waitress. Stroke Comeback Center is good.
 
I am numbers, too. It must be practice, practice, and perfect practice for numbers.  Stroke Comeback Center is good.
 
I am a volunteer at Ashburn Library.  Stroke Comeback Center is good.
 
I have two daughters in college:  I can speech and talk and Skype and email.  (thank you to my two daughters, they are very patient).  Stroke Comeback Center is good: speech, talk, and e-mail!!
 
Thank you Therapists Stroke Comeback Center.
 
Please give $24 to benefit for Stroke Comeback Center on June 8.


Support Stroke Comeback Center through 11:59 p.m. on Thursday, June 8, 2017 by visiting https://domore24.org/npos/stroke-comeback

Monday, June 5, 2017

Do More 24 by Pat



Donate Now

24 hours to do it again this year. It happens on June 8, 2017 this year. The Do More 24 started in D.C. For 5 years they help charities make money. This is when the Stroke Comeback Center (SCC) needs help. I've been going there for 5 years. This center is the greatest place. If I thought I was great now or I couldn't get better at all. I would have stopped. I know that I have traumatic brain injury (TBI), aphasia and post-traumatic epilepsy (PTE). 
 

This last year I went to the SCC two times a week. A lot of these classes were new. And I like them. On July 7, 2007 I had been in Iraq for a year. My guys and I would go at night to see if the bad people would set IED's. That night we were on top of a house. All of a sudden, across the road, I got shot.  I got shot in my left temple. I passed out right away. Four of my soldiers picked me up, dragged me downstairs, went into a Stryker (car), drove to Baghdad, flew to Balad and I had surgery right away. They threw away my left brain. 

It took me almost 3 years later to talk again. I joined the SCC in October 2011. Now I am talking better, write a blog, practice reading books and a class for using my brain. This is what I think is the coolest! When I got shot the Broca's area was destroyed. I should never have talked again.


My speaking, reading and understanding have gotten better. 5 years ago I couldn't read at all. If you do it, use your brain. The Stroke Comeback Center has helped me. Can you please give them $24 on June 8, 2017!!!


Support Stroke Comeback Center through 11:59 p.m. on Thursday, June 8, 2017 by visiting https://domore24.org/npos/stroke-comeback

Wednesday, May 24, 2017

Comeback Trail by Randy

My name is Randy Kernus.  I was the Stroke Survivor Coach Team Lead.  This race was for the National Stroke Association.  The race was in Washington DC., on April 22, 2017. This was the first time it was being held in D.C. And we hope to keep it going every year.  I was with Darlene Williamson and the NSA President for the countdown to start the race…5,4,3,2,1!

I am very pleased to be involved with this event.  I am a stroke survivor 6 years post.  I also have aphasia. I will do all I can to keep stroke awareness in the forefront as we never give up.

My body does not have any paralysis so I am able to walk and run.  However as a result of my stroke I have trouble understanding words.  When I first had my stroke I could not speak, read or write.  I also cannot see out of my right side.  Due to that I am always looking to my right side.

As a survivor I have become a Stroke Survivor Coach.  However, at this time I cannot be a trainer due to my brain injury as a result of my stroke.  Since my reading, writing and memory have been compromised, studying and taking tests presents a great challenge.  I will never give up trying to be a certified trainer.

We have exercise classes at the SCC.  Having an amazing trainer (Nancy Selden) that has helped me guide other survivors through our classes.  When I began being a coach during our classes I would watch everyone through the mirrors.  Now I am able to mirror other survivors.  When they went on the right I would mirror them on the left.  If they were on the left I would be on the right.  Sometimes I would make mistakes but I have gotten better.

The Comeback Trail experience represents just that, I am coming back to life as was everyone else who participated.  It was a new challenged that I was willing to take on.  Challenges are not as scary as they used to be and that is why as a survivor We Never Give Up!!
 

 

Thursday, April 20, 2017

Stroke and PseudoBulbar Affect (PBA) by Perry


I had a stroke 11+ years ago and have PBA. It makes my mood happy, even when it shouldn’t. TV news shows dead people; I am sorry, but I still smile. 


Watch TV, PBA commercial (https://www.pbainfo.org/) is good, some 3-4+ years have stroke. It was creating mood. The PBA commercial is stroke and brain injury. You are happy when TV has a bad story, and you cry when it is a great time.

For instance: Ex-wife before divorce, and I told her that I have PBA. The ex-wife’s mother died, and I was in a happy mood. I could smile, stand up for receiving line at funeral.

The practicing doctor is clueless. I can’t speech. I don’t see my neurosurgeon anymore. The Stroke Comeback Center was not telling, and realized my mood was happy and cry. Physical Therapy didn’t realize my mood. My family, parents and sisters, were normal. I am normal mood (I can’t speech). The 4+ years was heavy PBA, and no drugs for PBA (23 results -
https://www.pbainfo.org/pba-quiz). I am minor PBA today (9 results).

Kids were young: The actions is I might be, and I can change the mood quickly. My kids are rock strong, and I can thank you. Kids/Young adults (college freshman): THANK YOU!! Thank you!! I love you!! Thank you! 

Tuesday, April 18, 2017

Flying Down by Pat

So this made flying very good, then bad. On St. Patrick Day, Patty, my nephew Austin, and I flew to Sarasota, FL. I had called the TSA two weeks before and gave them my information. I told them my VetDog (WILSON) was coming. Two weeks later we went to Ronald Reagan Washington National Airport. We flew on American Airlines. Patty and I sat at the bulkhead. We sat there because Wilson is a big dog. He weighs 100 pounds. They let Austin sit in the first-class. It was easy and relaxing.
 
It was nice in Florida. We stayed at my mom's house and my sister, Mary, showed up. And the weather was beautiful everyday. It was about 75 degrees outside. After five days we went home. It was time to go back to reality.
 
We used Delta Airlines to go home. We were going to Atlanta then Reagan. I realized the airport was not huge in Sarasota. I thought there were nice people from Delta. So I did not call the TSA. First we asked about Wilson when we checked in. They told us to ask the gate agent. They said they would try to fix it. Then they started boarding. So I started getting mad and went over to ask here. "What's going on?" "Can I sit in the bulkhead?" They told me they were still trying to figure it out. They told me Wilson and I were in the 30th row. We went back there and Wilson couldn't lie down. He and I walked next to the back bathroom and waited. A flight attendant asked if I knew to go. "I told him that my VetDog and I can't fit in our row. I told them that I needed to be in the bulkhead. What to do now?" At the end, they did. Well, Delta is strange! The back the rows are tiny.
 
We waited for about 15 minutes. Then Wilson and I got a row at the bulkhead. While I was walking up, tons of people were Tweeting on Delta. "Do your job in the beginning!!!" 10 minutes later we flew to Atlanta. I was still mad! (The Irish come out of me sometimes...) I got my ginger ale and started to relax. There was a doctor sitting next to me. He liked Wilson and he helped people's brains. When the plane landed I got out of the way.
 
I got out and was figuring out where to go. Somebody was waiting to give me a ride to the next airplane. It became nice again. I hope that airplanes can be nice all the time. Now I know I need to call the TSA two weeks before I am going somewhere!

Tuesday, April 4, 2017

Music by Denise

I have two musical instruments that I play, the flute and the piano. The flute was my first study. I practiced the flute for at least four hours per day. There was little that I could not accomplish. I was a well accomplished flutist by the time I was ready to retire. It was a perfect time for playing the flute. I played the music for a long time. When it ended I was already a person in need of a new instrument. I bought a perfect piece, a beautiful piano. The piece was involved in all parts of the study. I cannot give a complete account of efforts during the years studied. But I will say that I was with a growing use of my hands.

Today I am struggling with notes, using only the notes that are played from one hand. My right hand is completely paralyzed. And I have only one hand to use. Work is slow.  You want to meet all of the notes on each line.  There is one more difficulty, and that is with the use of the language or words.

I will work with the one hand available to me.  This will bring all the notes from one hand. I have a friend who was a teacher and will bring me some things to practice. I am at the very beginning of learning, and it will take a long time to learn. I intend to be very happy with this work.

Tuesday, March 28, 2017

People Can’t See Aphasia Disability by Perry


I am aphasia speech – not digits and words. Society: Aphasia is not important – society (handicapped people: wheelchair, cane walk, walking/seeing dog and speech. I am speech aphasia. Society can people see wheelchair and cane walk.). I go to Stroke Comeback Center. We run the gamut - technical, financial, high school and/or college student, and President of companies, etc. The people here have aphasia, disabled from speech.

I don’t say “verbs” in my speech, and/or I don’t speak “objects” and “people” speech, etc. The society are waiter/waitresses, people and computer scientists, managers can talk I -- I can speak. People and Society can not know my disabled aphasia people. The highest aphasia, and never speak and forget words – society can know. The number is severe aphasia (I am several years), not words, or words (aphasia “xyzzy”: but “I am sorry” I would say!) not feeling but subject and object (I am now later), or story locally …. Most people is short time, and extra time.

(St Patrick Day I can walk to an Irish bar. The drink is Irish beer. I talked bar waiter, and I order the whiskey, and see I point third bottle on top. I speak to waiter: “I want the beer” but I should “I want whiskey, third bottle whiskey – not iced”. The waitress brings beer. The waitress can’t understand!! Right in my brain, not speech!!)

Because: Aphasia people is time and extra time.

The most important thing for people in society is time, time, and TIME!!!

With time, and I can talk.