Sunday, April 23, 2017

Strong Woman

While this is not from a stroke survivor it is still appropriate for both stroke survivors and caregivers. I think we can all, even us men, learn from this lady.

JerzeyCate – Strong Woman in Support Network Blog
Posted on April 17, 2017 at 8:17 AM

JerzeyCate” is a volunteer moderator on the Support Network who shares her experiences and perspective to help others.

“You are the most difficult person you will ever lead.” -Bill Hybels

Years ago, I read that quote and though I found it to be thought-provoking, it was certainly “not relevant to my life.” I’d worked in various aspects of Addiction Services for years and came up against some pretty tough characters That was just among staff. If nothing else, I was certain I had this one figured out.

Sixteen years have passed since injury forced me to stop working. I have finally come to understand why every once in a while, without provocation (an incident in my life or a book or article I’d read), those words would suddenly reappear in my thoughts: I have met the enemy and it is me.
Who is the most difficult person you have ever had to lead and how did you do it?
If you are ever asked this question as part of a job interview or promotion screening, heed my warning: the most difficult person you will ever have to lead is yourself.

As a child of the 60s and woman of the 90s, I was raised in two very different worlds. On the one hand being told I could do anything I wanted in life—even work outside the home. On the other, I was raised in a traditional two-parent suburban Jersey family. Dad left for work by 6:30 a.m.and got home at 6:00 p.m. Mom, like many mothers at the time, was charged with keeping the house going and lassoing the children before Dad came home to avoid chaos at the dinner table.

By the time I was in college in the 70s, I was actively questioning how I would ever do both. Yet, not a day went by that I wasn’t told by someone, or an article, or a book, or a movie, that I would be part of the “first generation of women able to ‘have it all.’”

On the rare occasion I questioned how this would work, I always seemed to get the same answer, “You’ll figure it out.” Okay, I thought.
Back in the “old days” there was a marvelous Broadway musical about the women’s movement called “I’m Getting My Act Together and Taking It On the Road.” I loved everything about it. I loved the music. I loved the message. A song from that play became my “theme song” of sorts. It’s called Strong Woman Number. For those of you not old enough to be familiar with the play (or old enough to enjoy hearing it again) here are the lyrics to the first stanza, which pretty much summed up my attitude about life:

“I'm doing my strong woman number
Walking with my head held high.
Doing my strong woman number
Determination in my eye.
I've got the look of assurance,
My observations have pith.
And the one that I love
Thinks I'm wonderful.
But I'm not the one that he's with.”

To give it a bit more perspective here’s a link to the song performed by the original cast it is called Strong Woman Number.
The “experts” are now beginning to admit it takes the right person, in the right circumstances, to successfully “have it all.” When I was growing up, it was expected. So over the years, I perfected my Strong Woman Number.
I was raised to believe - if only from the media and the “experts” - that I had to be all and do all, or (at best) I’d be a traitor to the women who had fought so hard for women’s rights or (at worst) I would be nothing.
Need something done? Feel free to pile it on my plate.
Sleep? Ha! It’s overrated anyway.
And then something happened that changed everything.

If you know me or follow any of my pages, you know that about five years ago, I had a bit of a Rude Awakening. A sudden onset health issue (a virus decimated the electrical system in my heart) and left me chronically in “Critical Condition.”
This rude awakening led me to the powerful realization that in My Strong Woman Number I’d spent most of my life running from myself — from what I had become. Because somewhere deep in my soul I knew this person — my stage name, so to speak, wasn’t who I really was.
People talk about Leadership and leading other people all the time. We often forget or don’t even realize, that the person who is the most difficult and most important to lead is ourselves.

When we lead ourselves well, everything else falls into place. We’re not bent on convincing, compelling or controlling others. We aren’t beaten down by circumstances or worries. We don’t spend time or energy on things that ultimately don’t really matter.
When you practice self-leadership, you operate according to an integrated perspective of your life which works through the power of choices and decisions you make. You move with purpose and intention, resolved to take responsibility for your own journey. Your focus and commitment are evident in every step you take. I knew this well. I taught Leadership classes at the local community college. Despite being considered an accomplished leader, I knew those words did not describe me.

I had a serious inner leadership problem. If I was to have any quality of life (or even stay alive very long), I had to make drastic changes in my life quickly. Having counseled people on transforming their lives, I knew what had to be done. The hard part was convincing myself it was my turn. That this time I had to do it.

At first, my inner Strong Woman piped up and said, “No problem! I’ll just add this bit of info and all the changes it requires onto what I’m already doing.” Somewhere else inside I knew that wasn’t the answer.

What do you do when you’ve been rocked to the core of your being? When you realize you’ve been sold a bill of goods. How do you deal with the knowledge that, though you may have many accomplishments, you’re not living up to your soul’s potential?
The first thing I had to do if I was to have any chance at success, was to say goodbye to my inner Strong Woman. How on earth do you do that? I was married. I had a true partner. But this was scary as hell to me.

Then I had to let go of the notion that I can do it all. To recognize that the fact that I can’t accomplish everything on my list doesn’t mean I’m inadequate. I had to learn to make changes, to be flexible when my system or plans didn’t work.
As someone who was born saying “I can do it myself,” the most frightening of all the changes I needed to make was to become willing to ask for help when I needed it. Sometimes even sooner.

I thought I had to be all, do all, or I would be nothing.
The inner Strong Woman in me protested loudly. In my dreams, she carried protest signs and walked back and forth in front of the house.
Of course you can still do it all.
It’s weak to ask for help.
Change? Why would you change when I’m in here (my inner Strong Woman would say to me) busting my butt keeping your head above water?

Then one day my husband pleaded with me to make changes in the way I lived my life, He tried to explain to me that keeping your head above water is not the point of life. He said, "You can’t live life to your fullest potential if you are always struggling to avoid drowning."
Finally, I became ready to let go of my inner Strong Woman and begin to start living the life I was meant to lead. I made a major admission and major progress that day. Despite having counseled people for many years, I had no idea where to start.
He begged me, “Please don’t obsess about this now.” Then suggested I start by trying to not sweat the small stuff. Knowing what a big deal that would be for me he added, “Keep it simple. Try beginning each day chilling out.” So I started to begin and end my day with 20 minutes of prayer and meditation. It’s actually a beautiful way to start and end the day. I started to feel a bit refreshed when I got out of bed instead of my regular wired or groggy.

Once I was healthy enough I began to try and get outside, even if only for a few minutes, every day and connect with the world. Sometimes I even got down and dirty.

Another tough one for me was l agreed to break-up with the “coulda,” “shoulda,” and “woulda” sisters (a.k.a. stop second guessing every decision and give yourself a break “already!”).

In what became a personal favorite, for the first time in my life, I began to set my own priorities — ones that are right for me, not my inner Strong Woman. Checking in with myself on a daily, if not hourly, basis and (based on my health at the time) seeing what is most important for me — not my boss, my spouse, my dogs, my neighbor, my mail carrier, my Facebook Friends — right here and right now.
Most importantly I pledged to enjoy what is left of my life.

I learned the hard way that life is a journey, not a destination. That’s right — there’s nowhere to go, nowhere you have to be, nothing to do that’s more important than what is happening right here right now.

From my experience with these changes, I think that if we would each spend time remembering that, focusing on the moment, and less time worrying about our inner Strong Woman Number, we’d all be a lot happier and the world we live in would be a much nicer place.
My message is (as usual) simple, yet complicated. As you go about your journey in life, living your own Strong Woman Number: Don't Just Save the World. Save Yourself!

Here’s a link to my new theme song also from I’m Getting My Act Together and Taking It On the Road…It’s called Happy Birthday. Enjoy!

Copyright @September 2016
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009

All rights reserved.

Sunday, April 16, 2017

Stent retrievers are a game-changer for severe strokes


By 2015, stroke experts were starting to agree on the benefits of using tiny, cage-like stent retrievers to remove clots from large vessels that block blood flow in the brain. Today, the consensus for that treatment has become universal, thanks to an analysis of patient data from five landmark trials.

The research is helping generate massive changes now taking place in the way doctors treat certain types of stroke.

“Since publication of the paper, there is no doubt left around the world that this treatment is a major leap forward for treating acute ischemic stroke due to large vessel occlusions,” said Mayank Goyal, M.D., the study’s lead author. “The national guidelines all around the world have changed. Whether you go to Spain or South Korea or Argentina, the treatment is here to stay.”

The meta-analysis, published last April in The Lancet, was selected as one of the American Heart Association’s top 10 heart and stroke science advances of 2016 for its detailed look at five groundbreaking studies published in The New England Journal of Medicine: SWIFT PRIME, MR CLEAN, ESCAPE, EXTEND-IA and REVASCAT.

Stroke is the fifth-leading cause of death in the United States. Of the estimated 795,000 Americans who have a stroke each year, it kills nearly 129,000 of them. About 87 percent of all strokes are ischemic strokes, which occur when blood to the brain is blocked.

Ischemic strokes can be treated with tPA, a clot-busting medicine that must be given within three to 4.5 hours after the start of stroke symptoms to be effective. But tPA doesn’t completely dissolve blood clots in larger arteries.

The stent retriever procedure, called an endovascular thrombectomy, “clearly improves the outcomes of many patients who are having devastating strokes,” said José Biller, M.D., professor and chair of neurology at the Loyola University Chicago Stritch School of Medicine. Biller, who was not involved in The Lancet research, helped write AHA’s 2015 stroke treatment guidelines urging medical practitioners to use stent retrievers.

“The findings are consistent across the board,” Biller said. “They unequivocally change the paradigm of how we approach these patients, and we’re talking about big numbers … 85 to 87 percent of strokes are ischemic strokes, and 15 to 25 percent of those are due to large artery occlusive disease.”

The number of stent thrombectomies performed in the United States has risen rapidly since the first of the five landmark studies was released in December 2014 and guidelines were updated six months later, shows a study presented in February at the AHA’s International Stroke Conference.

The study of nearly 1,000 U.S. hospitals showed that the average number of stroke patients receiving the stent retriever procedure at each hospital more than doubled, from 25 patients per year in 2014 to about 53 patients in 2016.

The meta-analysis in The Lancet pooled data from 1,287 patients in five studies to see if stent thrombectomies were successful across a diverse population. The study concluded patients benefited regardless of age, stroke severity and whether they received tPA.

One limitation of the analysis, according to Goyal, was that “each study had slightly different criteria for patients, but the bottom line is the criteria was relatively similar to each other.”

As far as medical complications from the procedure, which requires doctors to thread a catheter through an artery in the groin up to the blocked artery in the brain, “the paper shows there was no significant additional risk to the patient,” Goyal said.

According to the AHA, stroke cost the nation $71.6 billion in related medical expenses in 2012, and that cost is expected to triple by 2030. Each endovascular thrombectomy costs about $14,000 and is covered by Medicare, Medicaid and most private insurers.

“Studies show the treatment is cost-effective,” said Goyal. “You spend money up front, but because the patient has a better outcome, they require less rehab and less services later on.”

Goyal said he expects stent thrombectomy treatment to improve in the coming years. “Stent retrievers are a good, well-tested technique, but with new innovations, it’s quite possible that three years from now we may be treating patients differently, with even better techniques,” he said.

For the time being, Biller said, it’s important to educate the public and the medical community about the need to get stroke victims to the right hospital — one with a stroke center — as quickly as possible so they’re able to have a stent thrombectomy if they need one.

“There’s a saying ‘time is brain.’ Everything has to be choreographed to meet the timing constraints,” Biller said. “It has to be a multidisciplinary team effort of well-trained people, and the team has to be able to provide the services 24/7/365.”

American Heart Association News Stories

American Heart Association News covers heart disease, stroke and related health issues. Views expressed in stories under the American Heart Association News byline do not necessarily represent the views 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.

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Sunday, April 9, 2017

Life happens, then we move on

The following was previously posted on the Support network website:
blog editor note: 
"To the world you may not be much, but to one person you may be the world." - origin unknown
My name is Dottie and I wanted to share my story with everyone. It is not just my story, but it begins with my boyfriend Joey's story first. I met Joey on July 1, 2013. Joey is a musician and plays keyboards and guitar in a band. Joey had just lost his wife from a long term, rare illenss and as a consequense of her illness, he also lost his home, his dogs, and everything he owned. He was working as a chef in an Assisted Living facility, and evrything looked so gloomy for him. He was going to have to move in with his sister which would have created a hardship for her as she has three kids living at home and going to college. We spent night and day with each other getting his home cleaned out and ready to turn over and he was so depressed. Joey had a lot of things going on in his life and we decided that we would have him move in with me so that a young man living with him could go to high school and graduate. We got Joey moved in with me and began a life together.

On November 10, 2013 at 1:30 a.m., I was awoken from the bed moving. I asked Joey what he was doing and as soon as he began to answer me, I knew he was having a stroke! I jumped out of bed, called to our son and told him we had to take Joey to the hospital. He was right there, picking Joey up off the floor and putting him in the car and off we went to the hospital. We literally live 4 blocks from the nearest hospital and it took me less time to get him to the ER than it would have took the Aid car to get to our home. If it happens again, I will call 911 first as it is best to do in case anything happens I could not care for him. Joey got to the hospital within the 3 hour window to have the TPA shot and after some blood work to see if he could have the TPA shot, it was given to him. Within minutes, all of the stroke symptoms had gone away. He was fine, walked fine, talked fine, he brushed his teeth, combed his long hair, and went to bed at the hospital. When he woke up the next morning, he could not move his entire right side. His face was slightly drooping and his speech was a little slurred. He had suffered a second stroke sometime that morning and now, a second TPA shot was not given.

The doctors set everything up for Joey to go to rehab as soon as they felt he was stable. Joey went to rehab at a different hospital where they had the correct facilities to help him in his long journey to recovery. Once Joey was in rehab, he bagan his journey to recovery. He was very stubborn and resistant to therapy; however, he did choose me to be his girlfriend and I, knowing what stroke can be like and that you can recover as much as is possible, convinced him that he was going to try and never give up because I was going to be right there beside him, helping him get back to doing what he loved most, playing music.

Joey was in a wheel chair for about 2 months and then he had to have a cane to help him stand and try walking. Joey being the comedian that he is, named his cane, Erica, after Erica Cane on ALL MY Children! This is where the recovery began physically for Joey. He was depressed and I was at the Rehab center everyday as long as they allowed me to be there to try to help Joey keep up his mental health. I told him everyday, he can only recover as far as he allows himself to recover and only HE can do the work to get his brain to reconnect with everything it once knew. It was so hard in the beginning to help him be happy or see there was anything to be happy about. God in His infinate mercy and grace, showed me there was something I could do to help him remember how life should be for him.

I had planned to have a surprise birthday party for Joey as his birthday was November 17 and the stroke was November 10. I asked the hospital if it would be alright to have his birthday party at the hospital and the doctors all said they believed it would be beneficial to Joey if we had the party at the hospital. I called everyone and gave them the new address and even his friends from out of state came to his birthday party at the hospital. I had taken Joey down to his Physical Therapy and afterwards, I suggested we go to the Lunch room on the floor to see if anything was going on. Joey knew his sister was coming to have dinner with us at the hospital as she was going to bring the food. We were sitting in the lunch room when his sister and her daughter walked in carring huge bowls of food. Joey was wondering and asking why she had so much food with her when his long time friend from Oregon walked in the room with many more friends right behind him. Joey was so surprised and he was very emotional at the site of all his family and friends being there. I beleive it was at that time he determined in his mind that he did have so much to be thnkful for and he had things to do; such as, playing music again as many of his music friends and the members of the band he was in came to see him.

Joey has been working very hard at recovery. He now walks and he plays in the band. Joey has begun getting his arm to raise almost above his head and his fingers have begun working again. He can get away with playing the keyboards and he can hold a pick in his hand now to play his guitar. It isn't perfect, but it is there and he is so grateful that he can do the things he does today. He goes to Occupational Therapy once a week and Physical Therapy once a week and works hard to get as much function back in his body, mainly his arm and fingers now, to be back to full recovery as much as is possible. It has been nearly three years now and Joey looks normal, it is very hard to tell that he had a stroke unless you know him and know what and where to look. He will continue to work with Physical Therapy and Occupational Therapy as long as it is provided to him.

Joey has been an inspirational person to everyone who knows him, all the musicians who play with him, and to all his family and friends, both in life and on the Internet! People hear his story and see him and believe they can do what he is doing. I will be right here, by his side, helping him recover as much as is possible.

Ironically, on November 10, 2014, I had to suddenly have open heart surgery and have a three way bi-pass which became a 2 way bi-pass. I was able to return to helping Joey within one month of my surgery. Joey was right there helping me and doing things for me that I was not able to do or allowed to do for myself. Both of us are happy and our relationship has become stronger because of the challenges we have faced together over the past 3 years. Even though we went from just meeting each other before the first tragedy happened, his stroke, to me having open heart surgery, we have learned so much about each other and about ourselves. We are stronger today and we know there isn't anything that the 2 of us cannot handle as long as we believe in each other, believe in ourselves, and remember it has all been possible because of the grace of God.

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.

Sunday, April 2, 2017

Exercise after stroke

Exercise can significantly improve brain function after stroke

HOUSTON — Structured exercise training can significantly improve brain function in stroke survivors, according to research presented Wednesday at the American Stroke Association’s International Stroke Conference 2017.

In a meta-analysis of 13 intervention trials that included 735 participants, researchers found that structured physical activity training significantly improved cognitive deficits among stroke survivors regardless of the length of the rehabilitation program.

The researchers also found that cognitive abilities can be enhanced even when physical activity is introduced in the chronic stroke phase, which is beyond three months after a stroke.

“Physical activity is extremely helpful for stroke survivors for a number of reasons, and our findings suggest that this may also be a good strategy to promote cognitive recovery after stroke” said Lauren E. Oberlin, a graduate student at the University of Pittsburgh in Pennsylvania. “We found that a program as short as twelve weeks is effective at improving cognition and even patients with chronic stroke can experience improvement in their cognition with an exercise intervention.”

Studies estimate that up to 85 percent of people who suffer a stroke will have cognitive impairments, including deficits in executive function, attention and working memory. Because drugs don’t improve cognitive function, physical activity — such as physical therapy, aerobic and strength training — has become a low-cost intervention to treat cognitive deficits in stroke survivors.

The researchers analyzed general cognitive improvement, as well as improvement specific to areas of higher order cognition: executive function, attention and working memory. Exercise led to selective improvements on measures of attention and processing speed.

The researchers also examined if cognitive improvements depended on the type of physical activity. Previous studies on healthy aging and dementia populations have found that aerobic exercise alone improves cognition, but the effects are increased when combined with an activity such as strength training. In the new study, combined strength and aerobic training programs yielded the largest cognitive gains.

“Integrating aerobic training into rehabilitation is very important, and for patients with mobility limitations, exercise can be modified so they can still experience increases in their fitness levels,” Oberlin said. “This has substantial effects on quality of life and functional improvement, and I think it’s really important to integrate this into rehabilitative care and primary practice.”

Stroke is the No. 5 killer and a leading cause of long-term disability
in the United States.
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.

Sunday, March 26, 2017

Returning to Work After Stroke

This article is from the March 2017 edition of Stroke Connection magazine:

For many younger survivors, going back to work is often the measure for recovery. Here's some excellent guidance if you're working toward getting back into the workplace.

Pc0100100For many younger survivors, going back to work is often the measure for recovery. They sometimes rush through rehab so they can jump back into their jobs. However, they may find that they are no longer capable of doing what they did before, despite having completed rehab with flying colors. Even with possible accommodations provided by their employers, working life moves faster and requires more stamina than they have post-stroke. 

Steve Park
We interviewed three survivors about their experiences returning to work after stroke. One of those survivors, Steve Park, is a vocational counselor who works with disabled people, and we also got his input as an expert in this area. We also spoke with Paul Wehman, chairman of the physical medicine and rehabilitation department at Virginia Commonwealth University School of Medicine, and physiatrist Richard Kunz, an assistant clinical professor in the same department. Both saw returning to work as a benefit to recovery: 

“Work is very therapeutic,” Dr. Wehman said. That said, Dr. Kunz advised not to rush it. 

“Take time to get better,” he said. “The most important thing is to heal. Going back to work and financial pressure have to take a backseat to that. Take the time and make it a rational return to work.” 

“Rehabilitation is a process,with individuals having to learn for themselves what their limits are.” 

Steve Park,Survivor 

There is no simple answer about when someone is ready to return. Decisions should be made on an individual basis. 

“I have patients who have relatively severe functional impairment who go back to work, while other patients with less impairment do not,” Dr. Kunz said. “It depends on the person’s perception of themselves. Actual functional ability is rarely the thing that it boils down to.” 

Dr. Paul Wehman
One variable Dr. Wehman mentioned is how much a survivor’s self-image is connected to their work ethic. 

“Some individuals see themselves as workers, and the concept that they will never work again is foreign to them,” he said. “It is important for survivors to accept that things have changed. Even when a person appears to have made a full physical recovery, there are changes – stamina, language, sequencing, attention, noise tolerance and memory – that may not be obvious in the rehab environment. 

Steve Park remembers that when he first returned to work, he refused to accept that his skill level had changed. 

“The denial can go on for years, especially with a big change in vocation. It did for me,” he said. “Rehabilitation is a process, with individuals having to learn for themselves what their limits are.” 

The key issue is whether the survivor understands his or her level of disability. Family members are often clearer about this than survivors, especially if they loved their jobs and have a strong desire to get back to work. “I often use a neuropsychologist to help patients develop that insight,” Dr. Kunz said. Without insight, survivors often set themselves up to make mistakes that they don’t recognize but employers do. 

“As long as patients understand what their limitations are, they can learn to work around them and develop compensatory strategies,” he said. “We find that employers are open and willing to work with patients as long as they know what they’re getting into.” While physical deficits are challenging, Drs. Wehman and Kunz said those challenges are easier to overcome than cognitive deficits.

Dr. Richard Kunz
“One of the issues with cognitive impairment is that it impacts everything,” Dr. Kunz said. “If you have dense hemiparesis but are cognitively intact, you can still figure out your toileting, your hygiene, your mobility, taking your medications – all things that go on after stroke. But if you are significantly cognitively impaired, all your other problems become exacerbated.” Important issues to consider: Can you learn to use a cane or walker? Are you able to develop hygiene habits and don’t require assistance? Can you maintain your health going forward? “Cognitive issues make it harder to progress across the board,” Dr. Kunz said. 

Although employment can be good therapy,the healthcare system is not really focused on getting survivors back to work. Although employment can be good therapy, the healthcare system is not really focused on getting survivors back to work. There are many challenges a patient and his or her support system will have to deal with themselves. This includes issues like how to disclose a disability? What accommodations are necessary? Will I be eligible for benefits if I start working and it doesn’t work out? 

“These are all reasonable questions that our service delivery system does not answer in a nice, seamless way,” Dr. Wehman said. “That is not an excuse, it’s just what happens.” (See “Ticket to Work & Work Incentives,” below) 

Dr. Wehman stresses the importance of the employee realizing it is up to him or her to make things work. That includes asking for help whenever necessary. 

Both professors pointed out that there’s a lot of attention paid to survivors during the acute treatment and rehab and recovery phases of stroke. “Medically, we’re pretty strong in knowing how to help people there,” Dr. Wehman said. “And from a vocational rehab standpoint, we are pretty strong, but we need the patient to advocate for themselves, to ask for specialized supportive employment or support services as soon as they feel they are ready, because if they don’t, nobody is going to go knocking on their door.” Every state has a vocational rehab program that can help with this phase of recovery. In addition, the Employment Network providers in the Ticket to Work program will collaborate with survivors on developing plans and strategies for returning to employment. 

Dr. Wehman also noted that some survivors worry about jeopardizing their disability payments by going back to work. Part of the fear is what happens if they can’t remain employed. However with Social Security Disability Income (SSDI) and Supplemental Security Income (SSI), there is a trial work period. (See “Ticket to Work & Work Incentives,” below) 

“The Social Security Administration has a giant work incentive program to encourage people to work and keep their benefits to a certain level of substantial gainful activity,” Dr. Wehman said. “Anybody who has questions about losing their benefits would do well to check with their state’s vocational rehab program and have a benefits counseling evaluation so that they would know what their rights are. Most of the people I work with don’t know the rules.” 

As for reasonable accommodation under the Americans with Disabilities Act, the law requires that employees have an opportunity to have a reasonable accommodation; those accommodations are often paid for by public funds through vocational rehab agencies. According to the Job Accommodation Network, half of all accommodations cost nothing and many others cost less than $100. 

“With most employers there is not a problem when the accommodation is inexpensive — say, a piece of software, a change in desk height or work schedule,” Dr. Wehman said. “But the employer needs to know upfront what they are dealing with. They don’t like surprises.” 

Vocational retraining or additional education may be necessary, as it was with Steve. 

Since we published Steve’s story in 2004, there is a new opportunity in education called Massively Open Online Courses (MOOC). Many MOOCs are offered by large and prestigious universities; they are exactly the same courses paying students take, but the MOOC versions are typically free, though no credit is awarded. 

“I think distance education and online training and virtual education can be a valuable source of learning because it allows people to learn at their own pace,” Dr. Wehman said. “However, I honestly believe that having specialized help, accommodation and at least temporary support relearning the job at the job site is more valuable in most cases.” 

Steve said he believes most employers are aware about rules preventing discrimination based on disabilities. However, the ADA does not require that someone be hired. 

“There are myths about employing people with disabilities,” Steve said, “like the employer’s insurance rates will increase, or they will be absent more or accommodation will be prohibitively expensive. But I am noticing the employment world is getting better for people with disabilities as the disabilities in the workplace are brought out in the open, but sadly, discrimination still exists. The stroke survivor has to be willing to be a self-advocate.” 

Tips for Returning to Work 
Steve Park survived a stroke at age 31. Unable to return to his career as a refrigeration technician, he went to school, earned a master’s degree and has worked as a vocational rehab counselor ever since. We told that part of Steve’s story in “Tough Work” in our July/August 2004 issue. He currently works in the Supported Employment Division for LifePath Systems, a nonprofit agency located in a Dallas suburb. He outlined these tips for survivors wanting to go back to work. 

Contact the Vocational Rehabilitation agency for your state as soon as possible during or after rehabilitation for a stroke that affects your ability to work, even if you are not sure about eligibility. 

If you are receiving Social Security benefits, find out about the Ticket to Work program. 

If you are not sure about returning to work, try a volunteer job. By volunteering, you will increase your endurance, discover personal strengths/interests, help the community and it looks great on a resume. 

Enroll in a junior, community or a county college and study an area of interest for you. Science, writing, literature, math, history, physics, philosophy, electronics, welding, pottery, drama and a host of other learning opportunities are open at any age. School can be inexpensive rehabilitation. 

Expect to be treated just like people who don’t have disabilities.

Social Security Disability Insurance (SSDI) is a program of the Social Security Administration that pays benefits to disabled people and certain family members if the disabled person is “insured,” meaning that he or she has worked long enough and paid Social Security taxes. (For more information, visit

Supplemental Security Income (SSI) is a federal income supplement program funded by general tax revenues (not Social Security taxes). It is designed to help aged, blind and disabled people who have little or no income. It provides cash to meet basic needs for food, clothing and shelter. (For more information, visit

Ticket To Work Program 
Social Security’s Ticket to Work program supports career development for people with disabilities who want to work. SSDI beneficiaries ages 18 through 64 qualify. The Ticket program can connect you with a variety of free employment support services.

The Ticket program and Work Incentives allow you to keep your benefits while you explore employment, receive vocational rehabilitation or gain work experience. Cash benefits often continue throughout your transition to work and are eliminated only when you maintain a level of earnings, known as “Substantial Gainful Activity.” 

How It Works 
Everyone who receives SSDI or SSI is eligible to participate in the Ticket to Work program. To participate, contact an Employment Networks (EN) provider in your area to see if the services they offer are right for you. These providers offer career counseling, vocational rehabilitation as well as job placement and training. You may also receive services from your state vocational rehabilitation agency and then receive ongoing services from an EN. 

The Work Incentives program makes it possible for you to explore work while still receiving healthcare and cash benefits. This program allows you to keep your Medicaid/Medicare benefits during your transition period. 

There are other Work Incentives programs available. SSDI recipients can enroll in the Trial Work Period (TWP) program. The TWP allows you to test your ability to work for at least nine months. During that time, you receive full SSDI benefits no matter how much you earn as long as your work activity is reported and your disability continues. 

A program called Expedited Reinstatement (EXR) is available to both SSDI and SSI recipients. If your benefits stopped because of your earnings level but you had to stop working because of your stroke, you can request to have your benefits reinstated without having to complete a new application. While Social Security determines your benefits reinstatement, you are eligible to receive temporary benefits for up to six months. 

Another program, Protection from Medical Continuing Disability Reviews, prevents you from having to undergo a medical continuing disability review while you are participating in the Ticket to Work program. 

Ticket To Work & Work Incentives 

Help Line 866-968-7842 

866-833-2967 (TTY/TDD)
Copyright 2017 
American Heart Association/American 
Stroke Association. 
All rights reserved.


Sunday, March 19, 2017

Kandi's Stroke Experience

The following is a personal experience from a member of the American Heart Association Support Network web site:

Katie Bahn of AHA/ASA hosts the website. This site also has many testimonies from heart attack survivors but occasionally there is one about stroke that should be of interest to you readers.

My name is Kandi, and I am a 32 year old VAD stroke survivor. 

(VAD: Veterbral Artery Dissection. (a flap-like tear) of the inner lining of the vertebral artery, which is located in the neck and supplies blood to the brain. After the tear, blood enters the arterial wall and forms a blood clot, thickening the artery wall and often impeding blood flow.)

I was in the process of training for Disney World's 1/2 Marathon, and was running a 5K when it happened. Little did I know, that is what was happening. I was almost to the finish line, when my right shoulder began to hurt. I didn't think anything of it, just thought my sports bra was a little tight and continued towards the finish line.

Then I got very lightheaded and my legs felt like they were going to give out, basically I was ready to pass out. I stopped and went and sat on the side for a few minutes, but knew that I wasn't going to be able to finish. My sister in law piggy backed me to the finish line, where I did indeed walk through the finish line. Got a cold wash cloth for myself, got some gatorade and actually felt great. 

As we headed to the car to leave a headache started as well as squiggly lines in my vision. I thought nothing of it, as I figured I was hungry and I have had prior headaches/migraines like that. Headed to McDonalds for breakfast and while sitting with my boys while my husband ordered our food, the whole room started to spin. I started to sweat and just wanted to lay down. After a while of laying down in McDonald's I needed AC ASAP, and asked my husband to bring me to the car. 

My mother in law, as well as other family members in the medical field stepped in and told my husband I needed to get to the hospital right away. When I sat up for my husband to take me to the car I was leaning to the left and my pupils were off. 

We found the nearest hospital, as we were out of town at the time & rushed into the ER. At the time I was still able to tell them my name, date it was, my date of birth, etc. I had signs of possible dehydration as I live in Florida, and this happened in September, they did a blood test, but that was ruled out that I wasn't dehydrated and went straight for a CT Scan and they found the clot in the lower part of my brain. And while this all was going on, I went into A-Fib, but that has been ruled out it was a fluke thing. (I pray everyday that the is in fact true). 

I was given TPA and put into ICU, then transferred to my home hospital, where I would spend 3 days in the ICU there. After an MRI, it showed the TPA didn't bust the clot as expected. So I had a CT-Angio done to see if I needed a stent. Where the clot was in my brain the neurologist was unable to reach the clot to stint, and said it will break apart on it's own. 

 I was put on Coumadin, Baby Aspirin and Lipitor for 3 months. I did some physical therapy, just for my balance. I had not other deficiencies. I had a follow up MRI 3 months after, and the scan showed I was healed. I now take daily 325mg aspirin and live life to the fullest!
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.

Sunday, March 12, 2017

Miami, Florida Stroke Camp Continued

As I mentioned last week, in 2016, we did our first camp in Florida, ever, in May near Miami, Florida, at DelRay Beach. As promised, here is a look at some of the activities we did at that camp.

If you have friends near Miami, show them the link to this site:, so they can get a first hand opinion about our camp from someone they might recognize.

All camp items get from Peoria, Illinois to 
your site in this amazing vehicle.

We always like to start off the weekend with a drum circle.

We have serious sessions where survivors and caregivers discuss their experiences and emotions.

Then some fun time crafts

A little pampering

And our Saturday Night special party
We Love The 80's was the theme
for all of our 2016 camps 

A little dress up

And maybe a little Karaoke

And who can turn 
down a little dancing

Some of our camper couples haven't danced in quite a while.

Our last day ends with fun games guaranteed to make you laugh.

And we owe all of this to the wonderful volunteers who give of their time to enrich someone else's life, if for only one weekend.

And let us not forget our generous sponsors 
who helped make this possible.

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Sunday, March 5, 2017

Stroke Camp 2016 - Miami, Florida

Good news. Our camping season has now begun for 2017. Last weekend, March 3-5, we had our first camp at The Resort on Mt. Charleston in Mt. Charleston, NV sponsored by St. Vincent Healthcare.

Last year, 2016, we did our first camp of the year in Iowa in April and our first camp in Florida, ever, in May near Miami, Florida, at DelRay Beach. Here is a look at who attended that Florida camp. If you have friends near Miami, show them the link to this site:, so they can get a first hand opinion from someone they might recognize.

Next week I will show you some of the fun time activities we did there. 

Operations Director Bonnie

Administration Director Cheri

On the Left,
Stroke Survivor and Camp Co-Founder John

On  the Right,
Camp Support Director Martha

On the Right,
Camp Co-Founder
and Camp Executive Director Marylee

On the Right,
Camp Crafts Director and 3,000 mile Van Driver

Florida Camp Music Therapist Sheri

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