Stroke Specific Things I Wish I’d Known Sooner

by Marylee Nunley

v  Hearing early on (in a kind, gentle, and positive way) that this is a permanent condition, but still not to lose sight of great possibilities. To be informed that recovery takes lots of time and patience by all.

v  The brain is injured and it may take up to six months for it to heal and recover.  After that time, the patient will be working with the undamaged parts of the brain through a lengthy but rewarding relearning process.

v  Understanding that each time there is a new environment, the survivor may need to re-learn things (shower at home different from the hospital, bed not as convenient, meals served differently, etc.)

v  How to find the handbooks from www.strokenetwork.org  (online support group) or www.stroke.org (NSA) at the onset.  The internet and Facebook is full of things that help families understand the different parts of care and rehab that will be happening. 

v  Being given a list of stroke specific  terminology

v  Stroke survivors may seem to understand way more than they actually do. My impression was that if he heard it, he understood just like I did.  That couldn’t have been farther from the truth.  Receptive aphasia means that the person with the brain injury doesn’t hear and process the words the way they are spoken and may not understand what is said or completely misunderstand what is said.

v  Progress will be in terms of months and years and for the rest of your life, not in just days and weeks.

v  More about the caregiver role and what will be expected once going home and about burnout.  No matter how much energy and commitment we have, there will be a time we’ll just get tired of the responsibility.

v  More about aphasia----look at the person, go very slowly, that even though they hear what you say, they may not fully understand.

v  Support groups—both survivors and caregivers need them.

v  What to look for with regard to depression (often comes out as anger or crying) from isolation and loss of parts of their life

v  Understand how frightened the patient is and how lost they are in the world and may not understand what’s really going on

v  Routine should become your best friend for awhile

v  ADL equipment, gadgets and gizmos.  There isn’t time for the medical community to provide all this information and they don’t have the means (financially, insurance runs out) short of funding of some sort of program following discharge.  Here is where support groups can help

v  Understanding Health Benefits can be a challenge and making friends with a good social worker, discharge planner, or the insurance billing clerk can’t hurt

v  Disability application is long and tedious. There are books that can help. Make the adjudicator your friend and follow through with their requests

Well, that's my list. Undoubtedly you will have other items 

that you've encountered. If you want, go ahead and share

them by leaving a comment. That way we all learn just that

much more.  

I’m not a stroke survivor. What am I doing here?

by Chuck Jones

I get asked at almost every camp why I’m volunteering my time and “muscle” for Retreat and Refresh Stroke Camp. What is my connection with strokes or the camp? Why am I attending these camps? I haven't had a stroke. I don’t have a relative Survivor attending these camps as most do. There has been at least one stroke survivor in my family history but that was a long, long time ago. I am not an employee of any medical institution that works with stroke survivors. So, why am I here?

To explain my interest, I always start out with a short history of my association with John and Marylee.  For you, I will go into more detail. And really, this is not about me, primarily, but about Marylee and John Nunley, the founders of this camp.
  

As you may know John and Marylee Nunley are the founders of Retreat and Refresh Stroke Camp, founded in 2004. I am friends with both and I started out helping on camp weekends on Saturdays only. At that time, there was only one Stroke Survivors camp a year at the Living Springs Camp Ground near Lewistown, Illinois. Lewistown is about 45 miles south west of Peoria, Illinois.  John and Marylee live in Peoria.  Why did the camp start out at Living Springs Camp Ground in Lewistown 45 miles away? Well, that could be a topic for another blog article…some day.
    

John and I both worked at Caterpillar, Inc back in the 70’s. I'm not sure when John started at Cat but I started in 1970. John started out in Joliet, Illinois, which is about 128 miles north of Peoria and I started out in East Peoria, Illinois -  the Heart of  Illinois - which is about midway between Chicago and St. Louis.  John started in the factory and worked his way up into computers and finally ended up in Caterpillar’s Information Services Department in East Peoria in building AD.  I started out in computers in building A, in East Peoria, in May 1970, as a Tape and Disk Systems Programmer. Yes, we actually used tape in those days. Also, punched cards that contained our program code. I don’t remember exactly when John and I met but it was in building AD in East Peoria after it was built in 1979 to house Caterpillar’s Corporate Information Services staff. John and I, if I remember correctly, ended up in Database Application Support together in that building, supporting similar applications. So that’s how I met John.

We parted ways for a few years as departments fragmented and permutated but, eventually, John and I ended up together again in the IMS Database Support section. John has a commanding knowledge of computer application languages and IMS databases. IMS is a hierarchical database product developed by Caterpillar and IBM back in the 60’s. (okay, wake up. I didn't mean to put you to sleep) I will tell you, if I had my own Database company, I would need only one John to have a successful business (well, maybe two, because one thing I've learned in the computer business, it’s always prudent to have a backup).

John married Marylee in 1996, and in January of 2001 John began to have a series of medical complications with pancreatitis. During that terrible time I coordinated the IMS team, and others who knew John around Cat, to provide visiting and other needs, such as grass cutting, leaf raking, etc. to help them. Those who have met John know how much a likable person he is. He has a lot of friends at Cat who were willing to help him and Marylee through such tough times. John was well on the way to recovery from pancreatitus when in September of 2001 he had a stroke. If you are involved with a stroke survivor in any way you know what that means.
  

Against her wildest dreams of how she saw John and her future unfold after their marriage, Marylee became involuntarily involved in the stroke survivor recovery process. She immediately noticed several shortcomings involved in that process. Who provides an environment where a survivor feels like a person again? Where can a survivor feel something like normal again, if only for a weekend? Marylee, being the person she is, decided there was a need for something like that and maybe she could do something about it. She and John had some past experience with running a camp for children so they decided to give it a try for stroke survivors.
   

Marylee, and her sister Sarah and her husband Boyd, had previous experience with running camps for kids with Cystic Fibrosis (thus the connection to the Lewistown location) so her logical conclusion was, why can’t this work with stroke survivors? Okay, if you’re still with me, you won’t find it too difficult to see how the now current camps evolved.

That’s the detailed history lesson I promised. Today we’re looking to have 25 camps a year plus a few MegaBrain exhibits thrown in for education. I don't know about you but to me that is some awesome growth! If you want to know more about the MegaBrain click on February in the Archives area to the right of your screen.

Now the reason for this blog article - Why am I involved? As I stated earlier, I began because of my friendship with John and Marylee. After attending a couple of these camps I was able to see how much of a positive effect the camp had on the well being of the survivors AND their caregivers. Not only the camp as a whole, with themed activities, crafts, and fun and games, fishing, and rock climbing, but what impresses me the most is for an hour or so all the survivors get together in one room and all the caregivers gather in another to share their progress, hardships, experiences, encouragement, and hope. And you wouldn’t believe the benefits, emotional healing, and hope that leaves those two rooms.

I'm proud to be a part of that.

Attention Volunteers

by Chuck Jones

Hey gang, this posting is for all you volunteers:

I've decided that if I wait until our camp volunteer schedule is complete it would never get sent, so now it is ready.  You each should have gotten a copy in your email. It has been quite the difficult task as we attempt to match our volunteers with their "gifts" and still try to be sensitive to schedules hoping there are no hurt feelings in the process.  There are still some gaps that we are working to fill and some new people we are planning to train.  As is typical, there will likely be some changes before we execute the camps.  Someone will get sick or have a family situation come up, but at least we'll have a working document and you can put some things on your calendars. The question marks that you will see in the spread sheet I emailed to you are things that are pending due to information we need from our sponsors which will be confirmed when we get final word from them.

For those of you who might not have heard, Monica Vest Wheeler and Roger Wheeler are donating a trailer suitable for transporting our equipment to camps when there are double camp weekends.  More on that later, but that's why you see the column in the spreadsheet designating Van or Trailer.

You may notice that the Murray, KY camp isn't listed.  It's because they have decided to merge with the other two hospitals and will now become the "Western, KY" camp.  You will also see a couple of MEGA Brain dates listed.  That is because they coincide with a camp weekend and we want to be sure we cover all the activities that are happening.

Our meetings in Florida went very well and there are three hospitals in the Sarasota area who will be talking about partnering to bring a camp to their area.  They were receptive to an October date if they can get the funding.

Please know that we greatly appreciate all that you do for the camp and for our survivors and caregivers.  What you are doing is amazing and as you know, we couldn't do it without you. 

Marylee and John

Just Waiting and Planning

by Chuck Jones

Resting, planning, preparing, recruiting. That's where we are this month of May with our Stroke Camps. We have no camps scheduled for May but we have two camps coming up in June and both of them are on the same weekend. Now, how did that happen? It's easy. Campsites are not easy to schedule and book. There is a big demand for these sites from all over the country by all different organizations. We are just one of many.

We must book a site a year in advance to secure one and we must make a substantial deposit to hold that site for the year. This deposit is at risk because how can we book a site if we don't know if there will be a sponsor or even if campers are available? Well, you begin to appreciate our challenge. Basically, we have to get a commitment from a sponsor and take whatever campsite is available after that.  Keep in mind, these sites must be comfortable and handicap friendly for our stroke survivors.

This is one of the sites we were able to book last year near Lincoln, Nebraska.







We must find sponsors around these fifty states, meet with them, and obtain a commitment. Our financial resources are very limited so we can't schedule a camp without this commitment from a sponsor. We also work with these sponsors to identify potential campers. At the time of this writing our sponsors have been hospitals and other medical institutions. They operate as a business as we do so they have a budget just like we do, only on a different scale, of course. Nevertheless, we have to get on their budget in order to get funding before we can even begin booking one.

You might ask how we find campsites. That is a challenge in itself. We do a lot of searching ourselves to identify viable sites. Some recommendations come from the sponsors or by interviews with their staff. The internet is a useful tool for this, also. State Parks and Recreation sources are good places to start. When a list of site candidates is developed the sites must be visited by our team to ensure they meet our standards.

Doesn't that take a lot of traveling to meet with sponsors and visit campsites, you may ask. Oh, yes. We have very dedicated people who do this and do this without any fanfare. This is one of the things that make our camps great. It's the people who are dedicated to help make the life of someone else better, even if it is for only one short weekend a year.

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.