What Happened at Lake Barkley, KY. Stroke Camp ?

by Chuck Jones

I just got back from the weekend camp held at Lake Barkley in Kentucky, September 21-23. Over 50 stroke survivors, caregivers,  and volunteers attended this one. I want to thank Lourdes, Western Baptist, and Murray-Calloway County Hospital, our Kentucky sponsors this year, for making this camp possible. You have touched over 50 lives this weekend as they have never been touched before.

Lake Barkley is near Paducah, about an hour's drive from there, and, to me, is a "twin" lake with Kentucky Lake. Both are man made lakes. Kentucky Lake is 184 miles long, created in 1944, and Lake Barkley, created in 1966, is 118 miles long.  Most people hear of Kentucky Lake but not so much about Barkley.   I think what brings Kentucky Lake to the fore is that it was created first, plus it is larger, and most important to fisherman, according to wikipedia, "it holds records for the largest of three species of fish ever taken in Kentucky: white bass (5 lb.), Buffalo carp (55 lb.), and yellow perch (1 lb., 4 oz)." Lake Barkley holds the record for yellow bass (1 lb., 1 oz). Lake Barkley is just east of Kentucky Lake and the strip of land between the two is known as...uh...The Land Between the Lakes.

Okay, I hope you're still awake after that geography lesson. Here is where we stayed - The Lake Barkley State Resort Park.

The Lodge

 For those of you who may feel a little uneasy about attending one of our weekend camps because of the word camp in our name, this is a typical setting.

Our motel style rooms were here

We provided motel type accommodations with dining rooms and conference rooms for our meals and activities. Our campers were not sleeping in tents and eating around a campfire (although that doesn't sound too bad, does it). 

Just a walk along the shore of this...

Beautiful lake

For those who needed to get around the area we provide transportation. We also have carts that transport four, sometimes six, riders. But for 99% of our activities we did not need to leave the building. All facilities are handicap friendly.











These are the great and beautiful people attending this camp.









This year our theme is simulating a Caribbean cruise ship. Our tee-shirts reflected that.







We had  team projects.

 Team competitions.









Skits

This one was a Barbie Doll skit.  Well, come to a camp and you'll find out what it was about.

I have no idea what these two are doing.

Champagne anyone?

All cruises have Champagne night, right? Hmm...this might explain those two guys above. No not really. It was non-alcoholic, which raises even more questions about that pic.









And, then, what cruise goes without Karaoke night? Certainly not this one.

Maybe throw in a little Limbo?

















How about a casino? I think all the cruise ships have a casino, now. We had Black Jack, Roulette, and Bingo. Just for the record and in case the Feds are monitoring our blog, there was no money nor personal gain obtained from our casino, unless there is a way to regulate just plain fun. 

 We even had our own Gilligan and the entire passenger list of the SS Minnow.

And let's not forget the crafts 

 Massages












 And those terrific manicures.



Just this last weekend we had a camp at Natchez Trace State Park, Wildersville, TN near Memphis, Tennesee. Then we have one October 19-21 at Living Springs Camp, Lewistown, IL. And our last one for the year will be October 26-28 at Butman Methodist Camp, Merkel, TX.

If you missed out this year do not fret. Next year we are anticipating 25 camps throughout the United States. Check our web site for dates and registration forms at www.strokecamp.org - look for the "Stroke Camp Dates" link on the left side of the screen. The 2013 schedule will start being posted sometime around March or April of next year. If you have any questions please feel free to use the Contact Us link, in the list of links, at the top left of your screen.

Boyd Christy Peoria Il Staff

Boyd Christy  Peoria Illinois Staff
by Chuck Hofander

“Boyd, will you help me with this”. “Can you take me to the fire pit Boyd”? “Boyd can we go for a hike in the woods”. Boyd, Boyd, Boyd the request for his help is endless.

Boyd was one of the core group that established Stroke Camp and he works at most camps helping campers their luggage, driving campers to and from events, doing funny skits, and generally do whatever campers need.

Boyd has a history of being a long time camper and helping people. He and his family went to a Family Camp for 15 years and after that he became involved with a camp for children and young adults with cystic fibrosis; his son was born with this disorder. When he was approached about doing a Stroke Camp he said “it was a natural thing to do.” Boyd has been a Stroke camper since its birth.

Boyd has been disabled since the war in Vietnam and he say’s “I think that being physically challenged has given me an understanding of being disabled by stroke”. He continues “I can understand some of the challenges that stroke survivors face” he says “not getting around so much, not being able to want do you used to do, and the frustration of that.

Being disabled though doesn’t stop Boyd and I think he is a symbol of what stroke survivors can achieve. He walks with a limp and sometimes wears a brace to support his injured leg but his demeanor his actions seems to belay the fact that he is disabled.

You should admire Boyd for what he’s achieved. I think everybody he comes in contact does.

MegaBrain at the Kansas City Black Expo

by Chuck Jones

I just got back from Kansas City, Missouri where I had the pleasure of setting up our MegaBrain and Elsie computer exhibit for the 2012 KC Black Expo, September 7-9. We were in Bartle Hall which is a huge building that is part of the Kansas City Convention Center. It is so big that it has three loading docks, which made it kind of tough to find the MegaBrain after it was delivered.

Elsie and her Brain were part of the Research Medical Center booth. While we had only one small area on the convention hall floor, Research Medical Center, affiliated with the HCA MidAmerica Health System, was the major sponsor of the KC Black Expo this year. Hospital Corporation of America (HCA) is the largest hospital association in America and is headquartered in Nashville, Tennesee.  

This is Gina Taylor. Without her I would have had a much more daunting task setting up and managing the MegaBrain. She and two other ladies, Renee and Star backed me up when I needed a break now and then. They also helped me keep count of the visitors going through the brain when my attention was diverted elsewhere. Gina also helped me get registered and get a vendor parking pass so I could park near the loading dock of the convention center. 

Gina and her associates were there to promote stroke and cancer awareness. Most of the time they were busy conducting blood pressure testing and health risk profiling of the visitors who came through the booth. And they helped direct visitors to the MegaBrain.

I want to give special mention to Bishop Mark Tolbert and La Monica Moore, also, for their help in finding the MegaBrain and getting me the much needed resources and man power for setting up the 300 lb. MegaBrain Thursday night and, then, getting it back in the shipping crate Sunday night.   

We had over seven hundred visitors through the brain and many compliments about both the MegaBrain and Elsie the computer quiz.

 

 

The Black Expo is an incredible event with over 140 vendors listed in the directory showcasing a myriad of different products. The event coordinators were expecting 40,000 visitors this year but I don't think they got that. Many repeat vendors were remarking how low attendance was this year.  There were automobile dealers, Bass Pro Shops was there displaying boats, vendors displaying jewelry, cosmetics, purses, art, banking, remodeling,

and construction. I was drawn to this one because I'm retired from Caterpillar and the little models of the construction equipment caught my attention (that's my story and I'm sticking to it).

There were also many concerts and celebrities there. Tia Norfleet, the first and only African American female licensed by NASCAR was there - very beautiful woman. Her car had hydraulic problems so they couldn't bring it into the center.  Isaiah Washington was there, too. I heard he was on Grey's Anatomy or something. He was there for a book signing for his book "A Man from another Land: How Finding My Roots Changed My Life"

There was a booth with organic coffee staffed by a very nice family and very good coffee.  I sampled this myself and it was very good, indeed. They even offered to come to one of our camps and set up a coffee kiosk.


There was even a dental group there giving free dental care, such as, consultation, cleaning, and even filling and extraction. Whatever was needed.


One particularly interesting exhibit was by the KC Police Athletic League. The picture on the left shows Officer Daniel Watson of the KC Police Athletic League in the car used on the D.A.R.E Car Course. What made it interesting is that it simulates driving drunk. You have the option of day or night driving. At Officer Watson's urging I decided to try this and came back later and selected the day time goggles. I didn't do too bad. My vision was such that I was more dizzy than anything else and I didn't knock over any cones. When I completed that run I decided to try the night time goggles. I only got as far as putting them on. There is no way I could have driven that course with those goggles. I was seeing double big time. If that is what drunk driving is like, I don't see how any sane  person could get behind the wheel of a car in that condition. If you ever get a chance to try this, I highly recommend it.

Then, of course, what good is any Expo without food, and there was food there in abundance. There was even an open air market selling fruit and cookies and snacks.  Well, maybe not exactly open air. We were actually indoors so I guess that's not exactly open air? You can debate that while I eat.    





Then there are the small mom and pop food vendors that always have fantastic food.  I sampled deep fried catfish like strips and a deep fried chicken strip one (both off someone else's plate and both very good) but settled for chicken wings and fries with hot sauce.

This couple in particular were very accommodating. She is a retired school teacher and during conversation with her she revealed she knows a stroke survivor friend in KC who would be interested in our camp plus she has a relative in Paducah, Kentucky who might be interested in our camp there, also. I showed her, on my Nook, how to contact us through our web site for more information. Ain't technology great?! 

Well, that's it for Elsie and her MegaBrain this year, as far as I know. I get the feeling we'll be doing more exhibits next year if the interest I saw this year keeps growing.

Late breaking news! I just got an email from Larry Schaer our camp Associate Director. We have been invited to next year's Black Expo in Peoria, Illinois. It will be September 6-8, 2013. See you there.

David survivor since 2008

Chuck Hofvander is a stroke survivor and fellow camper. He is writing short stories for this blog about those who come to camp. Not just survivors and care givers but staff, music therapists, etc. Attached is one of many that he has completed so far. These are cut and pasted from other sources and as a result Blogger does some automatic formatting I have no control over. Other than that, they are presented in their original form, and have been approved by those he is writing about.

 David survivor since 2008
 

He had none of the normal warning signs, no warning at all.  It happened early one morning as he got out of bed and fell. He thought he had slipped on something but his whole right side was as David’s recalls “was pins and needles” but he was not concerned, he just thought his right side had fallen asleep.
 

David got back into bed and the pins and needles got worse. He crawled out of bed to get his partner. His partner and he had dogs and they thought David was playing but David came further into the room and tried to speak but could not. His partner new something was very wrong and called 911.  

In the ambulance they knew what was wrong, a stroke.

He can’t really remember the ambulance ride or the ER since David was in and out of consciousness but he does remember the ER was full.  When a nurse finally came to see David, his partner was asked what time did this happen but he didn’t know. David was in the ER for eight hours since there wasn’t a bed for him in ICU. He spent three or four days in ICU then they transferred him to Acute Rehab where he spent three weeks.
 

At first he couldn’t move the right side of his body and he couldn’t speak. Soon he recovered the ability to walk with assistance but he still could not speak or move has right arm.  When he was released from the rehab hospital he still could not move his right arm and hand (it would come back over the next year, but not the way it used to be). Dave still had trouble with his speech.

His speech came back over two years and now as he a “little aphasia”.  Currently the problem with his speech is apraxia. Apraxia is ‘a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently.’ It’s different from aphasia which is characterized by the loss of the ability to produce language.
 

When asked how he looks at life now David says “people say I must be brave but what else could I do? I am not brave”. Not brave? David speaks at various places about stroke, aphasia, and most of all apraxia.  He continues speech therapy to this day and he lives a full life, it’s a different kind of full life but still David is alive and that in itself is an accomplishment. 

Ants Come Marching In

Chuck Hofvander is a stroke survivor and fellow camper. He is writing short stories for this blog. These are cut and pasted from other sources and as a result Blogger does some automatic formatting I have no control over. Other than that, they are presented in their original form, and have been approved by those he is writing about. 

After my stroke in March 21, 2004, I began having seizures. After each one I had set backs in my recovery and often could not speak, read or write. This story is about some of the experiences I've had but one in particular. Enjoy.

Hope you enjoy this story. I enjoyed writing it.

I welcome any comments.

Ants Come Marching In

Chuck Hofvander

“Oh no, it’s happening again! It starts with a feeling of a lite switch thrown in my whole body. I try to speak but can’t. My eyes move from side to side but without my focus. I try to move different parts of my body but I have trouble controlling them. Finely I lose consciousness. I’m having a seizure. The whole process lasts under five minutes. My family decides whether the seizure is serious enough to be hospitalized and if so they call the ambulance. In the ER the doctors decide whether I should be taken to Critical Care (CCU) or just an observation hospital room.

I’m a frequent visitor to Northwest Community Hospital. In fact, I’m there so often I asked for “frequent flyer” discounts. I go there for lab tests, physical therapy, conversation groups, and inpatient visits where I stay from three to six days.

On many of my visits to the CCU, I was seeing ants crawling up the walls; ants are forbidden in CCU, I saw nurses that weren’t there and on one occasion laughed in my sleep for ten minutes. The CCU nurses thought something was wrong but my wife assured them laughing in my sleep was normal for me. The nurses kept an eye on me none the less.

Another time I thought the TV was talking to me. It was Sunday morning and I was watching Face the Nation, all of a sudden Bob Schieffer was talking directly to me! Then Bob asked me a question. That was too much! I switched the station to NBC. The host of Meet the Press did the same thing! Was I going crazy! I switched stations again, this time the Three Stooges were on; finally I was sane! Then Curly said “Moe, Chucky, Larry the cheese”! I WAS CRAZY! My wife convinced me that I wasn’t going nuts but I still had my doubts.  

But the most memorable time occurred in CCU.  Early one the morning I was worried about my wife, she was late; she always arrives by 6:30am. Time passed slowly and I got frantic. I pulled out the various needles stuck into my arms, yanked off the monitors, climbed out of bed, took the hospital gown off and proceeded to leave my room.

Now, I am six feet four inches tall and in pretty good shape. The nurses came running when they heard all the bells and whistles going off and were quite startled to see a man standing there bloodied, naked, confused, determined to get out of the hospital anyway he could. My plan was to hail a cab to go home.

They tried to calm me down but I was on a mission. The nurses were inches away from strapping me to the bed when my wife arrived and said “What is going on here”! I then timidly crawled back into my bed and said “But the ants said that it’s OK to leave”.

The moral: The mind can play tricks on you, you can’t trust ants, and sometimes it pays to not tell your wife the accurate story.

I told this to one of my work friends and he came back with the following:

“I find that this story contains a lot of the situations and behaviors as when we worked together.  You were mostly out of it; saw stuff crawling up the walls; and you spoke in strange tongues.  On several occasions we had to ask you to put your clothes back on.

Are you sure you had a stroke?  I guess that’s why I think you act pretty normal now because that’s the way you’ve always been.

Note:  That’s also why you were not allowed to have scissors or any pointy objects in your office.  Reading your notes in felt tipped pens did present some challenges.”

Ninety nine percent of what I wrote is true. You, the reader, can decide what is not. 

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