My Aphasia by Chuck Hofvander

This essay was written by Chuck Hofvander who is a stroke survivor and one of our campers. It was originally created under the auspices of the Rehabilitation Institute of Chicago and a federal grant from the National Institute of Disability and Rehabilitation Research, Grant No.:  H133B031127, Technology Promoting Integration for Stroke Survivors:  Overcoming Societal Barriers.

I hope you enjoy Chuck's story.

                                                      MY APHASIA
                                                   By Chuck Hofvander
                                                      © March, 2006

I woke in Milwaukee and thought “I wonder how I got here?” I was confused and not in Milwaukee at all. Over several days, I came to realize that I had had a stroke.

When I regained my senses, I accepted the fact that I could not walk or use my right arm, but I was confused because no one could understand my speech. That puzzled me. In the past, I had prided myself on my ability to communicate, but now no one could understand me.

Before the stroke, I had been a senior project manager at Xerox for 6 years. I had also been a senior project manager at Zurich Insurance, and for 21 years, I was employed by CNA in various positions. I had a wife, two kids, and a house in the suburbs. I rode a bike an average of 2,500 miles per year. I was happy. To my knowledge, I didn’t have an enemy in the entire world. To paraphrase a line
from the “Wizard of Oz,” “it’s not how you love, but by how much you are loved by others.” Well that fit me to a tee, but it took the stroke for me to realize it. I received hundreds of letters, cards and e-mails expressing support. They are still coming and it’s been almost two years.

Over time, I learned I had a brain disorder called “aphasia” (a language disturbance) and that it had no known cure. I just had to learn to live with it. Well, for me the news was devastating. Now, I was locked inside this big body and I was unable to communicate.

Through hard work and perseverance, I have improved a great deal. Yet, I’m not nearly back to the way I was and that is quite frustrating. I can “think it” but cannot “say it” or “read it” or “write it.” My mind has a will of its own. Aphasia does not affect intellect and that is what is so frustrating about this disorder. Because individuals with aphasia speak haltingly or not at all, people often
assume they are mentally ill or mentally challenged. It is one of the most heartbreaking and devastating of disabilities. I know because I have difficulty communicating with my two young sons.

But my aphasia has a bright side. Since becoming aphasic, I have made several friends that I would not have made otherwise. Len, Mary Lou, Barry, Dick, Janet, and Mike are just a few and others too many to mention in this short essay. I truly value their friendship. My relationship with my “new friends” is substantiality altered from the “friends” I made before I had aphasia in that they understand what it is like to have this disability. I am somewhat uncomfortable with someone
who does not have aphasia because they do not know what it is like to struggle with every word you speak. With those who share the same disorder, I feel as though there is a common bond between us. I share a ride with Len coming downtown, and we often joke that each of us are prone to lose our concentration at times.

As I mentioned previously, my aphasia has improved with time. Now, along with my wife, I am participating in a project sponsored by Northwestern University. It is called the Midwest Regional Aphasia Conference. I am also volunteering my services to many studies at the Rehabilitation Institute of Chicago (RIC) that include the Lokomat (see picture attached), a study to restore movement in my right arm, and in several writing exercises and conversation groups.

As I mentioned earlier, I was into bicycle riding in a big way. Well, my cycling buddies bought me a high performance tricycle (see picture attached). During the
summer of 2005, I rode over 1,000 miles, and I plan to do more this coming year. I feel like I did not have a stroke at all when I am riding. I feel free!!!!!

I am learning to live with my aphasia, but I am frustrated by it nonetheless. I’m learning to accept that I will never get back to the way I was. I have to realize that I am stuck with aphasia, but I cannot let my disability get me down or give up. I now realize that in a way the stroke was a blessing. I have made new friends, reaffirmed some old ones, gotten closer to my wife and children, and gotten more introspective in my way of thinking.

My stroke and aphasia has taught me several things. First, it has taught me not to worry about the little things. I used to worry about the littlest details. Nothing was too small for me to worry about. The second thing it has taught me is to not fear death anymore. Now that I was near death, it does not scare me. And third, I have learned to enjoy life. It is precious.

All material is the property of the Rehabilitation Institute of Chicago. All rights reserved.
http://www.rrtc-stroke.org/research/r4.php

Please feel free to post any comments or questions by clicking on the red word Comment following this article. If you have any questions or comments about anything that you would like to share with us please feel free to do so on any of our articles. Don't worry about being off topic. Any question or comment is welcome on any of the article's comments section.

ELSIE and Her Megabrain

by Chuck Jones

The MEGABRAIN and the New Learning Center

We are taking a new approach to increase stroke awareness this year. A year ago we displayed the MEGABRAIN, a large, inflatable, walkthrough model of the human brain, at the Peoria Chiefs baseball game during our June Strikeout Stroke events. This year we are adding a Learning Center, called ELSIE (LC), which will be located in an area near the brain’s exit. Visitors will be able to test their knowledge about strokes and learn a few new things in the process.

 

Here's a picture of the Megabrain I got off the Medical Inflatables web site at: 

http://www.medicalinflatables.com/MEGABrain.aspx

 ELSIE will consist of a sixteen square foot display area holding four laptop computers. The four computers are loaded with the same twelve questions to be answered by multiple choice selections via a convenient keypad. The display will provide space for literature, pictures of previous camps and campers, and trinkets if a sponsor decides to provide any.

ELSIE’s and her MEGABRAIN’s first appearance this year will be March 2nd at the Slap Out Stroke Event at the Maverick’s hockey game in the Independence Events Center, Independence, MO., which is near Kansas City, MO.

Then, ELSIE and her MEGABRAIN will appear again, locally, March 10^th,  at the Northwoods Mall in Peoria, Illinois. 

I hope to see all you Peoria area supporters there.

Additional appearances are planned for:

May 26^th, Diamondbacks baseball game in Phoenix, Arizona,

July   in Colorado,

June 1-3 , Kansas City, Missouri, Women’s Health Fair,

August 3^rd, Coralville, Iowa, on Tax Free Day,

September 7-9, Kansas City, Missouri, KC Black HealthFair,

April 20^th, Murry, Kentucky, Half Marathon Fundraiser

I hope you can make it to one or more of these events.

If you have any questions or comments please click on comments below. If you have any questions or comments about anything that you would like to share with us please feel free to do so on any of our articles. Don't worry about being off topic. Any question or comment is welcome on any of the article's comments section.

Camp Day Three - What Goes On At Camp Anyway

Day Three - Sunday

Sunday, just like Saturday, starts off with a wake-up call at 7am and breakfast at 8.

Following breakfast, around 9 o'clock, we have what we call Affirmation. It's an informal, 45 minute, non-denominational religious service conducted by the Retreat & Refresh Stroke Camp staff themselves. You are not required to attend but we offer it as an option for those who like to attend a worship service on Sunday mornings. This has typically been an emotional gathering as survivors and caregivers along with staff and volunteers share their thoughts about God in their lives, how their lives have been influenced by being a part of this camping experience, and encourage and uplift one another with their individual stories.

At 9:45 or so we start what we call the All Camper Games which is a team competition where we divide you campers up into groups to compete with funny and unusual tasks. Your first task as a team is to come up with a good name for yourselves and then make a poster that best describes your group. This one, since the theme for this particular camp was the 1960s and the Beatles,  was inspired by the song Yellow Submarine.

Here are a few of the ridiculous 

things that you will voluntarily do. 

Then, after all these fun and games and a short break to regain your dignity you will participate in another fabulous drum circle led by our music therapist.

The drum circle is really one of the highlights of the camp and campers will get to participate at least twice during the weekend.

After a short break we'll get back together for lunch and a few announcements before we bid adieu. But, before you go, make sure you get the handout that has your picture we took earlier in the weekend along with a list of all your new camper friends and contact information.

Well, that's it for this weekend except for all the hugs and farewells and safe trip wishes as we fly back to our homes. The coming years will have many more camps and you can attend any and all of them, if you choose. You don't even have to wait for a camp in your area. You are welcome to attend any camp we have in the nation. We haven't gone international yet but who knows, interest is growing and we could be anywhere.

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Camp Day Two - What Goes On At Camp Anyway

Day Two - Saturday

This is a busy, fun day where a lot gets accomplished. Wake-up call is at 7am and the first thing on the agenda is a good hot breakfast at 8am. Breakfast, as well as every other meal at camp begins with the music therapist leading us in a song of grace and ends with music and a funny skit performed by the volunteers. And again, the volunteers will assist the survivors with getting their meals for the day so you caregivers can enjoy yours knowing they're well taken care of.

After breakfast, activities begin with a forty-five minute educational session at 9am and another at 9:45. We usually have three to four speakers so there are two back-to-back sessions to allow everyone to hear more than one of the speakers. Past topics have ranged all the way from stroke awareness to wind farms to aroma therapy.


After the last education session is a couple of hours of free time. Actually, it's pamper time, where you may do a  craft, be pampered with manicures, massages, foot baths, Wii computer games, fishing and other fun stuff. Don't worry, you won't be bored. Or you can just sit around and visit, but I know you're not going to want to do that 'cause that other stuff is just way too much fun. And, caregivers, you don't have to worry about looking after your survivors or vice versa because volunteers are there to attend to everyone. Then, free time leads right into lunch around noon and you're eating again.

After lunch there will be crafts and games and fishing followed by another discussion group similar to the one you participated in yesterday and, of course, dinner. By the end of the weekend some get the feeling that all we do is eat but that's because the days go so fast it just seems that way. 











Saturday's are special because it's theme night. It is an evening of themed events where you are appropriately costumed and entertained according to your camp's theme. Past camp themes have been magic, cowboy, 1960's, and Academy Awards. We'll be dreaming up new ones for future camps.






One year the theme was cowboys,

another was the 1960's theme where we did the Ed Sullivan Show and the Beatles.






I don't know what future themes will be but we like it to be a surprise, anyway.







Oh, did I mention that we work some Karaoke in there, too? LOL. You'll love it!






Then, there's some more free time after the evening's themed event to help you wind down before bed time.

That's pretty much it for Saturday but then every camp takes on its own personality so almost anything can happen. 

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Camp Day One - What Goes On At Camp Anyway

Day one - Friday

Friday is the first day of our weekend camp. To start off, campers begin to arrive at camp around 2pm and the volunteers, who are standing by to greet them, help them unload their luggage, wheel chairs, etc., and direct them to the registration table. There they sign in, fill out any necessary paper work, get their name badges and the weekend’s schedule of events, and get their room assignments.



A volunteer will be standing by to carry their luggage, etc. and help them to their room and to get settled in, if necessary.











The first activity on the agenda, after everyone is accounted for, is the get acquainted drum circle – a favorite of everyone. A trained music therapist conducts the drum circle and everyone is given a percussion instrument of their choice for this session. It is very difficult to explain in words how a drum circle works but suffice it to say the music therapist makes sure everyone gets a chance to use their percussion instrument, has a lot of fun, and many good laughs. This is something you have to experience yourself as it’s an experience you’ll never forget.


Following the drum circle is dinner where grace is said, great food is served, usually cafeteria style, songs get sung, everyone is introduced, and a funny skit is performed by the volunteers. Sometimes these are audience participation skits and are so much fun.

A word about meals: Meals are catered and are usually served cafeteria style. Here is where caregivers get a little break. Volunteers assist the survivors with getting their meals and getting them back to the table so you don't have to worry about that. You just take care of yourself and we'll take care of the rest. Well, we'll take care of you caregivers, too, because that's why we're here.  

Following dinner there is some free time to do whatever you want followed by an hour or so discussion group where the survivors meet together in one room while at the same time the caregivers meet together in another. Each person, caregiver and survivor, to the best of their ability, is given time to introduce themselves to their group and share their situation, experiences and progress. These sessions are moderated by an experienced volunteer to make sure everyone has a chance to tell their story.  This is the time caregivers find they are not alone in their experiences plus they get a chance to see others struggling with the same problems they have and get to see how others handle theirs. It also gives the survivors a chance to feel comfortable by being with others like them, to identify with other survivors, to see they are not alone in their experiences and to see, through them, that progress is possible. A similar discussion group is attended on Saturday.

After these sessions, and for those facilities that are capable, we may gather around the camp fire to listen to the music therapist sing a few songs, everyone sings a few songs, and roasts s'mores over the open camp fire. You all know what s'mores are. If not, we’ll show you. After the camp fire, is another free time where campers and volunteers may do a craft, play games, socialize, or just go to their rooms and retire for the night.

Camp quiet time begins at 10pm.







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What Goes On At Camp Anyway - Volunteer Prep

I get asked a lot about what happens at stroke camp. People want to know what we do there. So I thought I’d spend a little time and try to give you a flavor of the things that go on at a typical camp, if there is such a thing as a typical camp.

I want to mention right now that even though we have the word camp in our name we are not sleeping out in tents. So, I guess you could call it luxury camping.  The accommodations we strive to get for the campers are handicap accessible and are what you'd expect from a motel room. Some camps have cabins, some are in lodges, and some have even been in hotels.  Each survivor/caregiver couple has their own private room with a bathroom. We even carry some equipment such as grab bars and toilet seat boosters, if needed, to make rooms more handicap friendly. We also carry an extra wheel chair in case one of those is needed. When you make reservations from home with us we provide a form where you can list any other special needs and we will make sure they are taken care of.

And in those cases where the rooms are not adjoining the activity areas, we provide transportation via golf carts to get you to and from the fun.











For the campers, the camps usually run from 2pm Friday to noon Sunday. On a couple of occasions we have had a four day camp, but that’s not very common.

Of course, before the campers begin arriving on site, the staff and volunteers must arrive much earlier for orientation and to set up decorations and banners, signs pointing to the camp, the registration table, tables for all the activities and crafts, set up instruments for the drum circle, and make sure all the sleeping accommodations and assignments are in proper order and the weekend’s meals are scheduled as planned.






Some volunteers are involved even earlier than that because back at base, in Peoria, Illinois, activity event personnel such as the manicurists, massage therapists, and educational speakers such as doctors and other experts have to be lined up, the craft supplies have to be replenished after the previous camp, the camp van has to be loaded at least a day in advance (and this is a miracle in and of itself to pack three days of camp items in one van), then the van has to be driven to the camp site.




Remember we are headquartered in Peoria, so when we have a camp in Miami or Phoenix, for instance, someone has to drive the van to that location, plus a few local, experienced staff members assigned to coordinate the camp on-site, have to make travel arrangements to the camp destination. We’ve even had situations where the van must be packed for two camps. Case in point, the van needed to be packed and driven to Odessa, Texas for a camp there and then driven on to Phoenix for a camp there the following weekend. We’ve also  had two  camps  going  on  the  same  weekend. So you can begin to appreciate our future challenges as we are planning 25 camps a year. 

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Official Opening of the Blog and What We're All About

Welcome to the official opening of our new blog. 

For best results, and to get everything on the screen without having to scroll left and right, set your computer's screen resolution to 1280x720 or greater. You should be able to see six birds in flight at the top right of the blog page.

We began work on it at the end of 2011 and as you can see there are a few "test" articles on it already. We will be adding new articles frequently so be sure to check back here to see what we have to say. If you would like to be a blog contributor and write an article for us please use the "Contact Us" link at the left of your screen to let us know and we'll help you with that.

Sometime within the week we will begin a series of articles describing what goes on at our camps over a typical weekend. For those of you who have attended a camp it will be common knowledge but we welcome your input. If you know of anyone who might be interested in camp you can direct them to this series to get an idea of what to expect. 

You will notice that at the bottom of each article there is a place to make comments. Please feel free to do so. There is also a link at the left of your screen titled "How To Use This Blog" that will explain in detail how to make a comment if you can't figure it out.

We welcome any input. If you have any questions you may ask them freely here in the comments section following each blog post and we will reply as quickly as we can. We will have someone on the staff assigned to monitor the blog daily in order to respond to any questions or comments.  

I am hoping that, through this blog, we will reach an audience that wouldn't be reached through our main web page (see link on left side of screen) or our new Facebook page. Also, while you may see quotes from the bible and other resources every now and then, we are not a religious organization and we accept people of all faiths at our camps. I have taken the following from our main web page at strokecamp.org and reproduced it here because it so accurately and clearly describes what we are really about. I would like to repeat what Jim Baranski said, quoted below, by saying that one of our major goals is to restore dignity to stroke survivors and their families. Here is what I took from our main web site to present to you today:

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Stroke camp is exactly what the doctor ordered for survivors and caregivers. Rediscovering the simple joys of life is what Retreat and Refresh Stroke Camp is all about. We get you out of your ruts or routines and treat the body, mind and soul to relaxation, laughter, music, companionship, sharing, tips, hands-on activities, and much more. We especially challenge that most vital muscle within you, your brain! And we guarantee you'll never feel better!

Stroke survivors and caregivers need a break from the stress of everyday life. They even need a break from each other! After providing stroke camps for hundreds of individuals since 2004, we KNOW strokes. We know that survivors need to engage with other survivors in more than an hour support group meeting once a month. Caregivers need the same outlet. Our three-day weekend camps blend all the essential ingredients of what "normal" folks enjoy with an abundance of pampering, compassion, friendship, smiles, patience and an extra helping hand when needed.

It's all about being yourself and embracing life again when stroke works overtime...

"If a tree is cut down, it will sprout again,
and its new shoots will not fail. . . Job 14:7 --------------------------------------------------------------------------------------------------------------------

I also included the quote that is on our strokecamp.org web site from Jim Baranski, CEO/Executive Director,National Stroke Association  as follows :

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"Among the many challenges stroke survivors face, restoring dignity for themselves and their families is often a most difficult journey... 'Retreat and Refresh Stroke Camp' stands ready to help with those first important steps."

Jim Baranski, CEO/Executive Director
National Stroke Association
__________________________________________________________________________________

Well said Mr. Baranski. So, I invite you survivors and caregivers to attend one of our camps and you will see that we are up to that challenge. We have conducted over 50 camps since 2004 so we must be doing it right.

Check back with us Monday (Jan 30) when we will start a four article series describing what goes on at a typical camp each day.

Thank you for joining us,
- Your staff and friends at Retreat and Refresh Stroke Camp

Please feel free to post any comments or questions by clicking on the red word Comment following this article. If you have any questions or comments about anything that you would like to share with us please feel free to do so on any of our articles. Don't worry about being off topic. Any question or comment is welcome on any of the article's comments section.