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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