Stroke Survivor

A stroke survivor dedicated to helping people with disabilities live full lives.

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HOUSE JOINT RESOLUTION NO. 561
Commending Paul Berger
.

 Paul Named Virginia Advocate of the Year
AHA's "You're the Cure" Honor
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Stephanie receives Fairfax Caregiver
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Stephanie blogs for Disruptive Women in Healthcare

Paul-Arm_raised-20002Ask the Expert 
Stroke Survivor
Paul Berger

Send your questions to Paul at Paul@StrokeSurvivor.com

 

 

Q.

What resources are available for home improvements and making my home more accessible?  I was 36 – my stroke was 4 years ago.  I have aphasia and am paralyzed on the right side. Any suggestions?

P.S. Congratulations on a great site.  It has been informative and inspiring.

 

           Milton M., North Carolina

A.

The federal website, Disability.gov has links to national, state, and local resources for making your house accessible, and helping people with disabilities to find funding and housing.  Click here to read about the site, listed on our Resource Links page.  Also, the cost of home improvements may be tax deductible.  Be sure to ask your tax preparer to check into this tax deduction, as many are not aware of it.

A few years ago, we remodeled our house to provide an accessible bathroom.  We also added a deck directly from our kitchen (no steps down) so I can carry food, books, and other things with one hand outside.  I have a small table by the door to place things when I’m ready to bring them in.  Also, the outdoor steps up to the deck have a shorter rise, only about 6 inches high, compared to the normal 8 or 9 inches.  This is easier to climb.  I use the deck entrance into the kitchen when I do the grocery shopping. 

 

 

Q.

The state vocational disabilities services agency said they have done everything they can for me, but I don’t have a job yet.  After my stroke, the state agency helped me return to school to get a college degree in a new field.  I was a good student and graduated with high grades.  But the agency won’t help me find a job.  How can they drop me after this investment?  I want to return to work.  What do you suggest?

 

                           - Victoria D., Virginia

A.

You have to find your job yourself, the same way that any recent college graduate finds a job.  The first step is a preparing a good resume.  Ask someone to help you with this.  When I finished my computer drafting school, I consulted an engineer.  Also, collect work samples, letters from teachers and others who know your work, papers, and anything that tells your story, in a notebook that you can present during interviews.

Make a business card with you contact information.  Network with everyone you know, every place you go. Give your card, and get everyone’s card.  Mail, fax or email your resume to everyone.  Look in the newspaper.  I found my drafting jobs through ads for engineers, thinking, if they are hiring senior professionals, maybe they will soon need someone like me to assist them. 

While you are looking, perhaps you can provide volunteer or consulting assistance to places that you would like to work, to build experience and contacts in your new field.Finding jobs and losing jobs are part of everyone’s life, especially stroke survivors. My book, “How to Conquer the World With One Hand…And An Attitude,” chronicles my ups and downs in the job market, and other real life adventures.

 

 

Q.

Please add information on dysphagia - swallowing problems. I am a speech pathologist and many of my stroke survivors still have this very frustrating problem. I think your website is a good resource and hope many people use it!

 

-Ronda Polansky, M.S., CCC-SLP,
 Dallas-Ft.Worth, Texas

A.

I have met many stroke survivors who continue to have dysphagia - swallowing problems - usually because a stroke results in weak muscles in the face, tongue, and throat, and problems with the swallowing reflex.

My swallowing improved over the weeks and months after my stroke with therapy and with the return of my strength. Once in a while, like my other stroke problems, I have a little trouble swallowing and try to be careful. The good news is that medical researchers continue to learn more about diagnosing and treating dysphasia. For example, a fact sheet on dysphagia from the NIH National Institute on Deafness and Other Communication Disorders (NIDCD) suggests that most stroke survivors should not tip their heads back when drinking. For more information, please visit the NIDCD website.

 

 

Q.

Paul, do you use the computer? 

 

- John S., Kansas

A.

Yes. The computer helps me in three ways:

  1. For personal research on stroke, rehabilitation, hobbies and my other interests on the internet and email to family and friends.
  2. For work.  After my stroke I learned computer drafting.  Also, I use word processing, spreadsheet, and accounting software.
  3. For speech therapy. I used word processing to type some of my speech homework, especially my weekly dairy. Also, I used a children’s math software to relearn basics.

Because I have aphasia, I use a screen reader to read the text aloud.

 

 

Q.

How long did it take you after your stroke to recover your speech?

 

                                         -Beth M., Ohio

A.

Stroke recovery is different for everyone.  My progress was slow, but it did not stop me from making plans, setting goals, and enjoying life.  I could say a few words when I left the hospital.  I spent about 2 years relearning how to make each letter and sound.  Today, I have hundreds of words, and can give presentations.  And, I continue to make progress, learning new words every day.  Don’t give up.

 

 

Q.

How long did it take you to walk after your stroke?

 

                                         -Susan D., Texas

A.

Walking and physical therapy seems to work faster than speech therapy.  First I learned to stand and transfer from the wheelchair to a chair. Then I learned to walk a few steps with a therapist. By six months, I could walk with a cane.  I was slow, but I walked a little more every day.  Two years later, I didn’t need a cane, except in bad weather.  Walking is so important for good health and recovery, I recommend that stroke survivors do everything they can to get on their feet, and walk.

 

 

Q.

Rehabilitation is so hard.  How did you cope with therapy?

 

                                           -Ken R., Oregon

 A.

My attitude was to view therapy as a sport. To succeed in a sport, you have to work hard and practice, even if it is a little painful. I practiced physical therapy exercises at home. I drilled speech therapy homework with a tutor.  I tried to communicate with family and friends, and strangers!

 

 

Q.

How long did it take you to write your book?

 

                                                             -Ben T., Maine                             

A.

My wife, Stephanie and I worked on the book for three years.  We based it on our diaries. My speech pathologist made me write in my diary every week as part of my rehabilitation, then showed me the corrections.  I recommend that you write or draw or put photos in a diary.  Don’t let aphasia stop you from recording your memories.

 

 

Q.

I have difficulty holding soap.  Do you have any ideas where I can find a “soap bag”?

 

                                    -Tom R., Madison, Wisconsin

A.

Using a bar of soap can be difficult with one hand. In the sink for washing my hands, I use liquid soap in a pump bottle. I hold my palm under the nozzle, and push down on the pump with my thumb. Because we watch our budget, we use a refillable bottle and buy the large containers of liquid soap on sale.

 In the shower, I use a bar of soap and a regular wash cloth.  I have a seat in my shower—I recommend a sturdy shower bench or built-in seat—it’s much safer for stroke survivors to sit while showering.  I wet the wash cloth thoroughly, then lay the cloth across my leg, and rub the soap on the cloth.  For hard-to-reach areas, I use a long shower brush.  I lay the brush next to me on the seat, then rub the soap on the bristles.  I prefer one that has soft bristles and a long wooden handle.  I buy mine from my local chain drug store.  The store also carries other types of shower brushes and items to use with liquid or foamy soap in the shower that would work well with one hand.

 

Copyright (c) Paul E. Berger & Stephanie Mensh

Stroke Survivor

info@strokesurvivor.com

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You are marvels!  I just read the newsletter ... and it is simply priceless (I always read them, and they are all noteworthy, but this one is beyond good.)  Paul, your book is in my book as something that all clinicians should have, read, pass on (ie, make them buy) to their clients.
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I came across your website today and just wanted to congratulate you on providing a helpful resource for stroke survivors and healthcare professionals.
     -Marisca Baldwin, The Pat Arato Aphasia Centre, Toronto,,Canada

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