Sunday, April 14, 2019

Stroke Specific Things I Wish I’d Known Sooner


www.strokecamp.org



http://www.unitedstrokealliance.org/


United Stroke Alliance in partnership with Medtronic launched a resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email info@strokecamp.org to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box
*****************************************************************

***************************************************************** 
The following was posted on this blog seven years ago. I happened to run across it last week and I thought it would be helpful to repost it. Marylee is the Director and founder of Retreat & Refresh Stroke Camp. Her husband had a stroke in early 2000. As a result, through her and and her husband's experiences with post stroke daily life, she thought how beneficial it would be, to both the stroke survivor and the caregiver, to be able to spend a weekend outside the now 
new-normal daily routine. It all started in 2004, with friends and acquaintances, at a campground that had cabins and handicap-friendly facilities. From there it blossomed into 35 annual weekend camps organized throughout the United States, and is still growing. Over the past fifteen years these camps have given thousands of stroke survivors and their caregivers a much needed break, a much needed rest, and an uplift from their normal daily routine. Plus whole lot of fun! 

Marylee probably could expand this list today after seven years of caregiving. Maybe, some day I'll ask her. If you think you can add more, let me know. 
*****************************************************************    


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.  

Sunday, April 7, 2019

After Stroke, Anxiety


www.strokecamp.org



http://www.unitedstrokealliance.org/


United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email info@strokecamp.org to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box
*****************************************************************
***************************************************************** 
Depressed older woman

After stroke, anxiety is common in women

By American Heart Association News

Angie Read Doyal was unsure if she'd be the same after her stroke. So, when she felt ready to return to work after only seven weeks of intense physical, speech and occupational therapy, she was confident.

But that self-assurance quickly was undermined by severe anxiety, panic attacks and depression.

New research adds to the evidence that Doyal's experience is all too common.

A new study finds that one in four stroke survivors report experiencing moderate to severe anxiety two to eight weeks after their stroke, with incidence more common in women and those who are single, divorced or widowed.

"We believe there is a bi-directional relationship between stroke and anxiety," said the study's lead researcher Jennifer Beauchamp, a researcher at the University of Texas Health Institute for Stroke and Cerebrovascular Diseases in Houston. The findings were reported this week at the American Stroke Association's International Stroke Conference in Honolulu.

The researchers analyzed the health records of 194 ischemic stroke survivors. An ischemic stroke occurs when a blood vessel to the brain is obstructed, cutting off blood flow. It accounts for about 87 percent of the nearly 800,000 strokes that occur in the United States each year.

All of the survivors had been screened for generalized anxiety disorder at a follow-up visit at a stroke clinic. Beauchamp and her team found that 32 percent of women and 21 percent of men reported moderate to severe anxiety. The patients with this level of anxiety were significantly more likely to be single, divorced or widowed than those without moderate to severe anxiety.

Anxiety after a stroke may be due to a combination of psychosocial factors and biological changes to the brain caused by the stroke, said Dr. Nada El Husseini, a neurologist at Duke University Medical Center in Durham, North Carolina, who was not involved with the study. Having a history of anxiety or depression may also play a role, she said.

That was the case for Doyal, who was diagnosed with anxiety about 15 years before her stroke and had always easily managed it with medication. She also had a family history of depression.

But she'd never felt so overwhelmed until after her stroke.

"I felt like I had 10 pounds of bricks on my chest," she said. "I wasn't sleeping. I wasn't eating. I isolated myself. It was destroying my life."

Doctors tried one medication after another, and nothing helped.

"It was worse than the stroke itself," Doyal said. "I was afraid of my own shadow."

More research is needed to help women like Doyal recover after a stroke, said Beauchamp, adding that the patient's anxiety also can affect the caregivers.

El Husseini said as researchers look to identify the best way to treat stroke patients who experience anxiety, they also should "take into consideration the other conditions that stroke patients are predisposed to, including grief, depression, sleep disorders, post-stroke fatigue and post-traumatic stress disorder, and how they relate to anxiety."

Following her stroke in July 2017, Doyal, who was 46 at the time, had another the following April.

"I have had to fight like hell to get to a point where I feel comfortable most of the time," said Doyal, who sought treatment at an inpatient hospital program for anxiety and depression. "My anxiety is still there, but I am managing it. And luckily the depression is dormant. But I walk on egg shells. I know it can come back at any time."

If you have questions or comments about this story, please email editor@heart.org.
****************************************************************
American Heart Association News Stories

American Heart Association News covers heart disease, stroke and related health issues. Not all views expressed in American Heart Association News stories reflect the official position of the American Heart Association.

Copyright is owned or held by the American Heart Association, Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to the American Heart Association News. See full terms of use.

HEALTH CARE DISCLAIMER: This site and its services do not constitute the practice of medical advice, diagnosis or treatment. Always talk to your health care provider for diagnosis and treatment, including your specific medical needs. If you have or suspect that you have a medical problem or condition, please contact a qualified health care professional immediately. If you are in the United States and experiencing a medical emergency, call 911 or call for emergency medical help immediately.

Our Camp Year Begins With Pat's Story


www.strokecamp.org



http://www.unitedstrokealliance.org/


United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email info@strokecamp.org to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box
*****************************************************************
*****************************************************************
Pat's Story was originally posted on this blog in 2011. Since we are starting up our camps soon for the 2019 season, I thought this might be of interest to those of you who have been thinking of but have not yet attended one. Pat and Tony have been volunteers at many of our camps throughout the years until Pat had her stroke and then they took on the tasks of caregiver and survivor. They continued to serve on our board for several years after Pat's stroke until their life's demands needed priority. They still help today with one of our local fund raisers. Thank you Pat and Tony for your support.

Our camps, attended by upwards of 60 people, are staffed by our professionals, local volunteers and volunteers from the hospitals in your area. A nurse is always on-site. We provide a safe, handicapped accessible, motel/hotel style, camp ground environment with catered food. We provide crafts, seminars, skits, drum circles, and activities all geared for both the stroke survivor and their caregiver.

Every year we have a different theme. Last year it was country/western and the year before the 80's. This year it will be a different theme but you'll have to sign up to find out what it is, or wait til next year, because we like to surprise our campers.

If you are interested click on either web site at the top to find out more about us and to get our phone number. Ask us about a camp in your area. Chances are there is one nearby.

*****************************************************************
PATS’ STORY
  Told by her husband Tony

            Saturday, Oct.20, 2001 started off as a beautiful autumn day, but ended up being the worst day in our lives. After going out to breakfast, a usual Saturday custom, we came home and I started to replace the window in our family room. Pat was sitting on the couch, drinking her coffee, watching me so she could help if needed. Just after I removed the old window, I saw her get up and stumble and then fall down (never spilling her coffee). I thought that she just lost her balance until I went over to help her get up, then I realized that something bad was occurring. She could not move her right arm and was having trouble speaking. Our daughter, Jenni (an Occupational Therapist at OSF) was on her way over to visit, so I called her on her cell-phone and told her what happened. She was sure that Pat was having a stroke and told me to call 911 right away, which I did. The Rescue Squad was there within minutes along with one of our daughters’ friends, who Jenni called and was a nurse that lived close-by. We were at OSF with-in one hour of Pat having the stroke and Jenni thought that things would not be too bad, because of getting there in time to receive TPA. The only problem was that Pats’ stroke was due to a hemorrhage in her brain, not a clot. The Doctors kept calling it a “big bleed”, which turned out being as bad as it sounded! The other problem was that it was too deep in her brain to perform any type of surgery on, without destroying more of her brain, so we just had to wait for the bleeding to stop or for Pat to die. They couldn’t tell us what to expect, but did suggest that we all say good-by to Pat, in case she didn’t survive and the Priest gave her “Last Rites”. Pat did survive!!

            After seven grueling weeks in the hospital Pat came home in a wheelchair and not being able to talk. Then we started outpatient therapy, OT, PT, and Speech. Pat had a very good attitude, which was the most important thing and really worked hard to improve; she can now walk with a cane and usually communicate what she wants by various means (some speech, actions, spelling, and expressions). We really feel fortunate, compared to other survivors’ stories about losing friends and even family after their strokes. We never lost friends; we even made new friends, thanks to our Support Group and Stroke Camp!  Another good that has happened is that Pat always wanted grandkids and now has five with one more coming to keep her busy. Pat really enjoys going to Camp, going on vacation, playing in three card clubs, going to Wednesday morning coffee and many other social events. Life is truly what you make of it!

            I mentioned Stroke Camp a few times; this was started in 2004 by a member of our Stroke Support Group as a weekend get-a-way at a local Camp/Retreat Center. We had one camp the first year, then two the following year, and, after word got out about the Camp, four the next year with Stroke Survivors and Caregivers from seven States attending. After seeing how much impact the Camp had on Survivors, the Director decided to go Nationwide with the Camps. Pat and I were > on the Board of Directors and <volunteered> to work at the Camps . This year <2011> there are eighteen Camps scheduled in various States. We will be volunteering in Colorado and Texas and maybe Springfield, IL. These camps are all funded by local Hospitals or Fundraisers and donations. I urge anyone who has a loved one or friend that has suffered a Stroke to tell them about Camp. You can find out more information about Camp at our website: www.strokecamp.org

(Editor's Note: over the years, since 2004, we have grown tremendously developing and hosting over 30 camps a year throughout the nation, coast-to-coast, border-to-border. We foresee this trend continuing. Words enclosed in < > brackets are made by me to keep the article current.)

Wednesday, March 20, 2019

2019 Stroke Camp List


www.strokecamp.org



http://www.unitedstrokealliance.org/


United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email info@strokecamp.org to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box
*****************************************************************
***************************************************************** 
2019 Stroke Camp List and Open Registration Dates for
Retreat & Refresh Stroke Camp


We get a lot of inquiries regarding registration. We are working at getting things set up for camp registrations to begin. 
We cannot accept any names until your camp's registration opens up on its specified date and time! See list below and check back frequently at: www.strokecamp.org for updates.
There is a process of getting all the agreements and details in order before opening up for campers and volunteers to register. We will be opening camps up as soon as we have things in order and at the request of the sponsor as well. Check the website and Facebook frequently, we will be posting opening dates there. We cannot accept any names until registration opens up! Please do not send payment until you submit your registration at the time it opens up.
Below is a list of our camp dates and locations which many of you have already seen in our latest newsletter. Here is the complete list with the information we are able to release at this point in time! 
---------------------------------------------------------------
GREENVILLE CAMP **NEW**
Sponsored by Prisma Health
Camp Dates: April 26-28
Camp Location: Unicoi State Park in Helen, GA
Please keep checking back for more registration dates and details
EASTERN IOWA CAMP
Sponsored by Mercy Cedar Rapids and University of Iowa Health Care
Camp Dates: May 3-5
Camp Location: Camp Courageous in Monticello, IA
Registration opens TODAY (March 19) @ 10:00am CT (Campers and Volunteers)
First Come/First Serve
DIGNITY: MAY CAMP
Sponsored by Dignity Health
Camp Dates: May 17-19
Camp Location: Chapel Rock Camp in Prescott, AZ
Please keep checking back for more registration dates and details
GOOD SAMARITAN CAMP
Sponsored by Platte Valley -SCL Health and SCL Health -Good Samaritan
Camp Dates: May 31-June 2
Camp Location: Highlands Presbyterian Camp & Retreat Center
Registration opens Friday, March 29 @ 9:00am MT (Campers and Volunteers)
First Come/First Serve
NEW JERSEY CAMP
Sponsored by Atlantic Health System
Camp Dates: May 31-June2
Camp Location: Fellowship Deaconry Ministries in Basking Ridge, NJ
Please keep checking back for more registration dates and details
INDIANA CAMP
Sponsored by Franciscan Health Foundation and Franciscan Health-Indianapolis/Moorseville, Franciscan Helath Auxiliary Lafayette, IBEW, Work-Comp Management Services, and Virginia Downing
Camp Dates: May 31-June2
Camp Location: Turkey Run Inn in Marshall, IN
Please keep checking back for more registration dates and details
OHIO CAMP
Sponsored by OhioHealth and the Ohio Health Rehabilitation Hospital
Camp Dates: June 7-9
Camp Location: Maumee Bay Lodge & Conference Center
Camper Registration opens Monday, April 15 @ 9:00am ET -Lottery System -Call the United Stroke Alliance office at opening to submit your name into the lottery system
Volunteer Registration OPEN NOW -Exclusive to OhioHealth employees ONLY at this time -Please print, fill out the form and send it back to the United Stroke Alliance office
WAUSAU CAMP **NEW**
Sponsored by Aspirus Health System
Camp Dates: June 7-9
Camp Location: Forest Spring Camp & Conference Center in Westboro, WI
Please keep checking back for more registration dates and details
BOSTON CAMP
Sponsored by Brigham & Women's Hospital
Camp Dates: June 14-16
Camp Location: Warren Conference Center in Ashland, MA
Please keep checking back for more registration dates and details
PITTSBURGH CAMP
Sponsored by UPMC Rehabilitation and Stroke Institutes
Camp Dates: June 14-16
Camp Location: Crestfield Conference Center in Slippery Rock, PA
Camper Registration opens Monday, April 1 @ 10:00am ET -10 Returning Campers/10 New campers
Volunteer Registration CLOSED
AMITA CAMP
Sponsored by Amita Health Neurosciences Institute
Camp Dates: July 12-14
Camp Location: Elmhurst College in Elmhurst, IL
Please keep checking back for more registration dates and details
ROCKFORD I CAMP
Sponsored by Mercyhealth, Illinois Neurological Institute, OSF Saint Anthony Medical Center, Swedish American, and Van Matre Encompass Health
Camp Dates: July 19-21
Camp Location: Lutheran Outdoor Ministries Center in Oregon, IL
Please keep checking back for more registration dates and details
DIGNITY: MAY CAMP
Sponsored by Power of the Purse, EncompassHealth, Dignity Health
Camp Dates: July 29-31
Camp Location: Chapel Rock Camp in Prescott, AZ
Please keep checking back for more registration dates and details
FAMILY CAMP
Sponsored by United Stroke Alliance
Camp Dates: August 1-4
Camp Location: Lutheran Outdoor Ministries Center in Oregon, IL
Please keep checking back for more registration dates and details
INI CAMP
Sponsored by Illinois Neurological Institute at OSF 
Camp Dates: August 2-4
Camp Location: Pilgrim Park Camp in Princeton, IL
Please keep checking back for more registration dates and details
CHEYENNE CAMP
Sponsored by Cheyenne Regional Medical Center
Camp Dates: August 9-11
Camp Location: Highlands Presbyterian Camp & Retreat Center in Allenspark, CO
Please keep checking back for more registration dates and details
ST. JOHN CAMP
Sponsored by Ascension St. John Hospital
Camp Dates: August 16-18
Camp Location: Weber Retreat & Conference Center in Adrian, MI
Please keep checking back for more registration dates and details
DETROIT: HENRY FORD CAMP
Sponsored by Henry Ford Health System and DeMaria
Camp Dates: August 23-25
Camp Location: Faholo Conference Center in Grass Lake, MI
Please keep checking back for more registration dates and details
TOLEDO CAMP **NEW**
Sponsored by St. Vincent Mercy Medical Center
Camp Dates: August 23-25
Camp Location: Michindoh Conference Center in Hillsdale, MI
Please keep checking back for more registration dates and details
ROCKFORD II CAMP
Sponsored by Mercyhealth, Illinois Neurological Institute, OSF Saint Anthony Medical Center, Swedish American, VanMatre Encompass Health
Camp Dates: August 23-25
Camp Location: Lutheran Outdoor Ministries Center in Oregon, IL
Please keep checking back for more registration dates and details
MADISON CAMP
Sponsored by UW Health
Camp Dates: September 6-8
Camp Location: Green Lake Conference Center in Green Lake, WI
Please keep checking back for more registration dates and details
SYRACUSE CAMP **NEW**
Sponsored by Upstate University Hospital -Syracuse
Camp Dates: September 6-8
Camp Location: Greek Peak Mountain Resort in Cortland, NY
Please keep checking back for more registration dates and details
PONTIAC CAMP
Sponsored by St. Joseph Mercy Oakland
Camp Dates: September 6-8
Camp Location: Faholo Conference Center in Grass Lake, MI
Please keep checking back for more registration dates and details
ASHEVILLE CAMP
Sponsored by Mission Health
Camp Dates: September 13-15
Camp Location: Lake Junaluska Conference Center in Lake Junlauska, NC
Please keep checking back for more registration dates and details
LINCOLN CAMP
Sponsored by Lincoln Partnership, Bryan Health, Madonna Rehabilitation Hospitals, CommonSpirit Health
Camp Dates: September 13-15
Camp Location: Carol Joy Holling Center in Ashland, NE
Please keep checking back for more registration dates and details
BILLINGS CAMP
Sponsored by St. Vincent Healthcare
Camp Dates: September 20-22
Camp Location: Rock Creek Resort in Red Lodge, MT
Please keep checking back for more registration dates and details
COLUMBIA CAMP **NEW**
Sponsored by Maury Regional Medical Center
Camp Dates: September 20-22
Camp Location: Joe Wheeler State Park in Rogersville, AL
Please keep checking back for more registration dates and details
ODESSA CAMP
Sponsored by Medical Center Health System
Camp Dates: October 4-6
Camp Location: Ceta Canyon Retreat Center in Happy, TX
Please keep checking back for more registration dates and details
VCU CAMP
Sponsored by VCU Health
Camp Dates: October 11-13
Camp Location: Airfield Conference Center in Wakefield, VA
Please keep checking back for more registration dates and details
CHATTANOOGA CAMP
Sponsored by Erlanger Health System, HealthSouth, Siskin Hospital
Camp Dates: October 18-20
Camp Location: Cohutta Springs Conference Center in Crandall, GA
Please keep checking back for more registration dates and details
TOPEKA CAMP
Sponsored by Kansas Family Stroke Foundation
Camp Dates: October 18-20
Camp Location: Rock Springs 4-H Center in Junction City, KS
Please keep checking back for more registration dates and details
WILIMINGTON CAMP **NEW**
Sponsored by New Hanover Regional Medical Center
Camp Dates: November 15-17
Camp Location: Rockfish Camp & Conference Center in Parkton, NC
Please keep checking back for more registration dates and details
Please check now for your camp's registration date at: www.strokecamp.org. If it isn't open yet, just keep checking back frequently. 
This blog post is just a reminder. I will not be updating camp open dates on this blog. For access to the most current camp status please go to: www.strokecamp.org

Sunday, March 10, 2019

Stroke Has 19 Definitions Part 2 of 2


www.strokecamp.org



http://www.unitedstrokealliance.org/


United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email info@strokecamp.org to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box
*****************************************************************
***************************************************************** 
Stroke Has 19 Definitions Part 2 of 2
by Chuck Hofvander

For nine days I was unaware of my condition, unaware that the world was still out there. Over the next few days I learned the details of what had happen to me. I had suffered a brain attack and my once normal, comfortable world for 52 years, had been changed for ever.

They fed me through a feeding tube in my stomach, no taste of steak, or potatoes or beer for me. I couldn’t walk, move my right arm, talk, read, or write. Slowly I had to relearn the things all of us take for granted. my normal life was suddenly un-normal.

I was an inpatient in a rehab hospital for five weeks and I continued rehab on an off to this day. I still have some trouble walking, reading, speaking, and writing and I still have little movement in my right arm. But I am alive and I am able to function.

During this entire process, my wife and sons did not let me rest when I was not “officially” in therapy. They stretched my arm, and legs. They read my favorite books, and played music. They did all they could do to stimulate me. My wife made the therapists provide a copy all the exercises and lessons they did with me.

Through hard work and determination I have recovered a great deal but I am still not the way I used to be. A friend of mine commented that I was goofy before the stroke and he didn’t notice much difference!

The worst part of my stroke was aphasia. Aphasia is an impairment of the ability to communicate, not an impairment of intellect. Aphasia can range from just missing a word now and then to the inability to communicate at all. Aphasia is not well known, but there are 100,000 new aphasia survivors EACH YEAR in the U.S. alone. Some like Dick Clark are well known but there are many others who are hidden from view because of their inability to communicate.

Through years of hard work and perseverance I improved a great deal. Yet, I’m not nearly back to the way I was. I can “think it” but have difficulty “saying it’ or “writing it”. My voice and writing seem to have wills of their own. A clear thought comes into my mind but when I try to convert it to speech it gets garbled up.

As for reading, challenging is too mild a term. Before the brain Attack I used to read three books at one time, now I can barely read one book a month.

I have problems with reading the written words. I insert words, omit words, read the same line several times, and sometimes words are unintelligible.

My sons are only mildly surprised by my writing, reading, and speaking skills. Repeated MRI’s of the left side of my brain (the side that controls reading and speech) shows that it’s essentially missing. I told this to my sons and they looked surprised. I asked them what’s wrong and they said “We didn’t think you had a brain before your stroke”

As for physical and occupational therapy I have to thank all of my therapists who worked with me. They were all supportive but and at the same time they didn’t take nonsense from me. I apply to this day the exercises I learned from them. They re-taught me the principles of walking, dressing, eating, climbing stairs, all activities of daily living. They are the unknown heroes of the medical world.

It is also important to keep your mind active as well. To that end,
• I joined a library book club
• I write for several stroke related publications
• I do crossword puzzles
• And I write stories about my life

And now partially due to the therapist’s efforts, my family, especially my patient and loving wife, and others, I have finally adjusted to my new life.

I was recently visited by two old friends. They were my colleagues before my stroke. We were discussing our lives, the normality in home life. Both friends were unsatisfied with their job lives, complaining how their work hadn't changed in years and has become unsatisfying. They were complaining about their normal lives and I could only think how fortunate they were to have such normal, complain-able lives.

But their visit made me think of what a normal life really is? After all, what is "Normal?"


Then I got to thinking about my previous "normal" life before the brain attack. For years, when I worked, I got up regularly at five o’clock in the morning to start my day and the day generally ended at seven at night when I sat down and watched TV. When I compared that life to my current one, I realized that in some ways, not much had really changed.

I mean, I still get up early every morning, out of bed by six AM and I spend my day writing, reading, sleeping, talking, biking, exercising, and eating and it’s all therapy... OK, maybe not the eating part, but at least I'm not being fed through a tube in stomach, like when I was to the hospital. And I still watch television at night. So overall, life is still good. Still normal as it was in many ways.

Sure, I regret the fact that I’m partially disabled, that I can’t do all the things that I used to, but I’ve adjusted to my “new normal life”.

Granted, I do have to concentrate on every word that I speak. Watch every step I take. Concentrate every movement that my body makes. In some respects, I had to make similar conscious efforts in my previous normal life. So, I’ve come accept that I have to do more of it in my new normal life.

Yes, I AM different now, but I’m still normal. It’s a just different kind of normal and I’m OK with that. My wife and children have accepted that fact because that’s who I am.I am as normal as I can be, a new kind of normal.

I am adapting to my “new normal life”. I’ve come to realize that after the stroke I wasted time regretting my “old normal life” and feeling sorry for myself. The grieving and letting go of my old life as I knew it, was necessary. With the help of dear friends and especially my loving and caring family, I finally realized it’s not a one time process. It’s a normal ongoing process that never ends. The same as it in everyone's normal life.

And as life has its way of challenging us over and over again, well.... Nine months after the stroke I had a seizure. It was late in the day, around five o’clock, and I lost control of my body. My wife called the ambulance and I was taken to the Emergency Room at Northwest Community Hospital. Again. By then the seizure had already begun to subside and I had my wits about me again.

The ER doctor came into and looked my admittance information, there was look of disbelieve shrouding his face.

"Haven't I treated you before," the doctor asked.

My wife said that he had.

He was the ER doctor that had been the first one to see me when I had the brain attack. He was the one who gave my wife no hope. 

I will not deny that I miss my old normal life, but I’m determined to live my “new normal life” to its fullest. You never can recover fully from brain attack, but you can adjust to life to a new normality that makes your life still worth living.

As a famous author once said; "The abundant life does not come to those who have had a lot of obstacles removed from their path by others. It develops from within and is rooted in strong mental and moral fiber."

That author gave us some some very good advice. Advice to truly live by.

Sunday, March 3, 2019

Stroke Has 19 Definitions Part 1 of 2


www.strokecamp.org



http://www.unitedstrokealliance.org/


United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email info@strokecamp.org to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box
*****************************************************************
***************************************************************** 
This is a two part article written by our buddy Chuck Hofvander. Chuck is a stroke survivor and one of our campers. Part 2 will run next week.
*****************************************************************
Stroke Has 19 Definitions Part 1 of 2
by Chuck Hofvander
Stroke has 19 definitions. It can mean a stroke of good luck, a rowing style, a caressing movement, etc and all mean something positive. Only one meaning has a negative meaning, sudden blockage or rupture of a blood vessel in the brain resulting in loss of consciousness, partial loss of movement, or loss of speech.
I prefer to use attack, to be more specific Brain Attack. Brain Attack is defined as: To harm using extreme, destructive, or uncontrollable force to the controlling center of the nervous system in humans. The brain is the center of thought and emotions, and bodily activities.
Thank you for taking the time to listen to me today, and you’ll really have to listen. I’m sure you’d rather be doing something else but hopefully something you hear today will help you, a relative or a friend someday. Here’s what I’ll attempt to cover:
·        Scare you and make you aware to the dangers of stroke
·        Tell you some facts about stroke
·        How stroke can affect you and others
·        How it affected me and others

Brain Attack/stroke is not a well understood, yet it is:

• the number one cause of disability in the US

Everybody should know the warning signs.

Some facts:
• Three million American’s are currently permanently disabled from stroke
• More than half a million people in the US have a stroke each year

A stroke does not discriminate when choosing its victims. A stroke will strike people of all ages, sex and race. No one is immune
In fact, on average, every 40 seconds someone in the United States suffers a stroke.

The medical cost to handle stroke victims in the United Sates alone, exceeds $30 billion. Yes. 30 billion dollars.

As is the case in most medical issues, the average public remains unaware, until it happens to them and by then, it is too late. Recognizing the symptoms and acting FAST, can save a life. And that life you save, could be your own.

A simple acronym for understanding the symptoms of a stroke is FAST. Convenient, since acting FAST is important to minimizing damage and saving lives.

(Red Italics added by the blog editor.)
We are now adding four more letters to the acronym you are used to seeing: B, E and ER: "BE FASTER".

• B=Balance - Sudden loss of balance
• E=Eyes - Sudden blurry or loss of vision.


• F= Face – Smile. Does one side of the face droop?
• A= Arm - Try to raise your arms. Does one drift downward?
• S= Speech - Are your words slurred? Can you repeat any 

                       sentence correctly?
• T= Time - If you have any of these symptoms call 911.
                   Time is of the essence.
• Emergency
• Room 


Get to the ER by ambulance, because the EMTs know what to do on the way, FASTER! (plus they can blow through red lights and get around traffic jams and be diagnosing you on the way so the proper team is waiting at the ER door.)


It’s important to act FAST because brain cells are dying by the minute. By acting FAST up to 80% of Brain Attacks can minimize the damage.

Stroke is not a good word to describe the devastating effects it has on one's life. A brain attack happens fast and sometimes without warning.

I had lived my life never really knowing a stroke was. Or how it affects people, especially the families of stroke victims. Boy was I in for a surprise.

I was 52 years old when I had my brain attack. It was on March 21, 2004. My wife was attending a bridal shower and my two sons were both working. All in all, I had been living a simple normal life.

I was home alone on that leisurely Sunday afternoon. In my basement, doing, of all things, my routine exercises. I began to feel a little light headed and decided to go upstairs. The symptoms suddenly began to worsen and I felt like I was going to pass out. The last thing I remember was going into the family room. I learned later, that there was where my wife found me when she returned home. The attack lasted maybe five minutes. Five little minutes. Two and half hours later, my wife found me in our family family, staring at death's gate.

I don't wish to brag, but, in many ways, I have been a very fortunate man. I mean, I've always been healthy and very happy in my personal life. I have wonderful home in the suburbs that I share with my lovely wife and together, we've made a home for two wonderful boys. I have also been fortunate in my professional life. Starting as a clerk, I worked my way up and succeeded in becoming a corporate executive. I've always eaten well, drank moderately, and I exercised regularly, four to five a week.
Who could have imagined that five minutes little minutes were to change 52 years of life.

When I was brought into the Emergency Room at the Northwest Community Hospital, the attending doctor gave my wife little, if any hope, for my survival. The neurosurgeon advised my family, that if she didn’t operate in the next 30 minutes, I would, in all likelihood, die!

Imagine your loved ones being told that surgery held no guarantees. That even if the surgeon operated, you might still end up in a coma for the rest of your life, or possibly, (pause), die on the table.

The priest in attendance was contacted, (pause), and he administered MY last rights.

Brad, my 20 year old son, was beside himself, lost in a daze of unimaginable disbelief. Mathew, my 17 year old, broke down in tears, falling to the floor, he begged God - “please don’t let Dad die”.

My wife, Liz, did the only thing she could do. She granted surgeon permission to operate, and pleaded with the doctor to do her best.
When they opened my skull, they found hemorrhaging - a blood vessel had bursts inside my brain. The blood had collected in one area, creating a swelling that amassed to the size of baseball. With limited room in the human skull, it pressed my brain against one side on skull.

After the surgery, I spent five days in a coma. For my family, it seemed that the doctor's predictions were right.

On my son Brian's 21st birthday, nine days after my brain attack, nine days after the uncertain surgery, nine days after I was given my last rights - I awoke.

Brain said it was the best birthday present he had ever received. I was gratefully touched when hearing that.

NOTE: From the blog moderator - If you found this article, Part 1,  interesting, Part 2 will be posted here next week.