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Paul Berger & Stephanie Mensh's
Stroke Survivor
News & Attitude
For YOU
July 2009
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~~<<~~ IN THIS ISSUE ~~>>~~~
1. NEWS: Research on Stroke Recovery & Rehabilitation: Stroke Policy on Telemedicine
*** Intensive Aphasia Therapy News ***
2. PAUL’S SURVIVORS TIPS: Driving
*** CELEBRATE JULY - 40th Anniversary of Moon Landing ***
Set Your Goals High!
3. STEPHANIE'S CAREGIVERS TIPS: Where do we fit in health reform?
4. PAUL'S FAVORITES: Straps & Wheels To Go
5. WHAT'S NEW on: http://www.StrokeSurvivor.com
6.. Stroke Reading Problems? Free Read-aloud Software
7. Subscribe
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Please forward this newsletter to your friends and colleagues who would benefit from these tips. Click it forward to people in your stroke club, volunteer groups, place of worship, community services and neighbors, to
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1. NEWS: Research on Stroke Recovery & Rehabilitation: Stroke Policy on Telemedicine
Telemedicine has been proven to improve stroke care in the acute and post acute stages, according to the recently published in depth policy statement of the American Stroke Association and other experts. Data supporting the policy comes from the stroke systems of care model, where community hospitals are linked by state-of-the-art computer audio-video equipment to experts affiliated with a stroke center, sometimes with agreements to transport the patient to the center.
Successful models allow neurologists to participate in the all-important physical assessment of the patient through a remote hook-up and to prescribe key treatment, like tPA,for the appropriate patient within the short timeframe required to make the decision.
The policy statement lists priorities for health reform to improve access to telemedicine, including changes to certain national licensing and reimbursement regulations, and improved funding.
The article was published in the May issue of the journal "Stroke", click here.
To read a summary, click here.
To view a video (MWV format) on how telemedicine works, see the May 7 clip , click here.
For additional resources to help you find information on medical, health, rehabilitation, recovery, self-empowerment, and more, we have collected our favorite links, click here.
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*** ADVERTISE YOUR PRODUCT OR SERVICE IN OUR NEWSLETTER ***
Contact us at Paul@strokesurvivor.com or 703-241-2375. Special rates for newsletter & web: www.strokesurvivor.com!
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*** Intensive Aphasia Therapy News ***
In my search for budget-minded alternative therapies, I found Bill Connors at the Pittsburgh Aphasia Treatment, Research and Education Center (PATREC). I enjoy his innovative approach and tools at http://www.aphasiatoolbox.com.
Bill and I use a webcam and Skype for my 3-times-a- week sessions. I set my goals and the pace. I have lots of homework, most that I do alone on my own schedule.
This month's progress update: One goal is to make complete sentences. Bill calls the exercise, "Conversational Engagement." I start by thinking of an idea, and say theword aloud: "car." Then, I think of a related verb, "drive." Then, I think about the purpose of my sentence--to give a compliment. I pull my thoughts together and say aloud, "You drive the car safely." We have a real conversation!
For details on this exercise, and a complimentary consumer Q&A fact sheet, contact Bill Connors at bill@aphasiatoolbox.com or phone 724-494-2534.
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2. PAUL’S TIPS FOR SURVIVORS: Driving
Many stroke survivors can return to driving--I did about a year after my stroke. I had driving lessons from a school with an adapted car. Today, some rehabilitation centers have drivers testing centers. Driving is a big part of my independence and ability to work and stay active in my community.
Last month, we decided that it was time to buy a new car My car was 10 years old, and falling apart. New car prices were very low.
(1) The first step was to find a shop to install the spinner knob on the steering wheel--since I can only use one hand, and a left foot accelerator--since my right foot is too weak to be safe. The shop that adapted my old car just closed. I found Lee Perry of Driving Aids Development Corp.
(2) We shopped online. We liked the old make and model of car, so we compared features, colors, and special sales prices from the websites of our local dealers. We picked one and emailed the dealer. The car was waiting for us.
(3) We prepared for the hours and paperwork at the dealer.
(4) I cannot drive a car without the adapted equipment, but I sat in the drivers seat, adjusted the mirrors, worked the shift, and reviewed everything. Stephanie drove us around the block.
(5) When the left accelerator pedal was installed, I worked with Lee to adjust the pedal to be safe and comfortable for me.
One of my favorite books on setting new goals is: "The Success Principles, How to Get From Where You Are to Where You Want to Be," by Jack Canfield. He believes that you make your own success and gives this formula:
"Events" can include bad news, bad weather, or a severe stroke. as well as good news and happy occasions. Response" means how you answer the news or what you do next. "Outcome" is where you are now. This month, for me,the formula worked:
Event = decrease prices for new cars
Response = I have a 10 year old car that is falling apart
Outcome = I bought new car.
A helpful website for driving rehabilitation is:click here.
Do you have a tip to share? Send it to me at Paul@strokesurvivor.com for a free gift if we use it.
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*** CELEBRATE JULY - 40th Anniversary of Moon Landing ***
Set Your Goals High
The 40th anniversary of the first men walking on the moon has many meanings for me. I met Stephanie on a blind date at the 10th anniversary celebration at the Air & Space Museum in DC. I have always been interested in the hopefulness and future goals of space flight. Shortly after my brain surgery and stroke, I was in the hospital watching TV when the Challenger shuttle exploded with the first teacher in space.
My stroke felt like my life had exploded. But, I did not give up, I set new goals. Not to walk on the moon, but to walk around the block. What goals will you be inspired to set?
To read my article on Setting Goals to Recover from Stroke, click here.
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 3. STEPHANIE'S CAREGIVERS TIPS: Where do we fit in health reform?
In my "day job" I am a health policy and insurance reimbursement consultant. So, I have been following the health reform debate in Congress, and see it from the eyes of a family with a stroke survivor who has ongoing health care needs.
There are many difficult issues in the health reform debate, including what exactly should be covered by health insurance? Acute care, annual preventive visits, post-acute, healthy living coaching?
Commercial health insurance has many ways to limit its exposure to the costs of long term chronic conditions, like surviving stroke, including caps on therapy. Another way is challenging access through "pre-existing conditions" ineligibility and/or very high premiums. As a result, the physicians and therapists seem to prescribe and set treatment goals that match the insurance plan, often short of the patient’s needs, especially for rehabilitation following stroke. They look to the survivor’s family, particularly the spouse/caregivers, like me, to pick up the torch and carry on.
I am all for patient responsibility, but I am a health policy expert, not a therapist. And as a wife, it strains our relationship for me to drill my husband on therapy exercises or correct his aphasic speech. Over the years, we've been creative and resourceful, and sacrificed. We've found wonderful rehabilitation professionals who have coached us on our main goal--making Paul as independent as possible. And Paul has a great attitude--he pushes himself to do more. Going back to work full time was one of his goals that he achieved. As he regained his independence, so have I, giving us a more "normal" family life.
We have been lucky, but there are many families who don't have our resourcefulness to set goals beyond insurance limits. When a stroke survivor doesn't reach his full potential for recovery, everyone suffers. Working-aged survivors often lose their jobs, income and benefits; and caregivers are likely to be less productive at work or forced to cut back hours, putting their own benefits at risk.
Health "insurance" reform needs to provide accessible, affordable ways to make health insurance available, even to people with pre-existing conditions. Health "system" reform needs to provide pathways for regaining and maintaining health and independence for the patient and the family.
Talk to your members of Congress and tell them what you need.
To follow my occasional blog for Disruptive Women in Health Care, click here.
For more tips for caregivers, click here.
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*** StrokeSmart Magazine Features Stephanie's Column ***
The National Stroke Association's magazine "StrokeSmart" features a column on Caregiving by Stephanie in each 2009 issue. The January-February issue focused on caring for the caregivers with the twist of using career and other coaches. The March-April issue focused on building the caregiving team. The May-June issue focused on building independence for both the survivor and caregiver. The July- August discusses time management. Subscriptions are free and available from the NSA's website, click here.
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4. PAUL'S FAVORITES: Straps and Wheels to Go!
I needed a new carry on bag for my summer vacation. I wanted something small and lightweight, but with wheels so I could pull it for the long walks through the airline terminal. Many of these small bags have wheels, and handles. Since I can only use one hand, I also need a shoulder strap. I found a bag with all these features: the Delsey Helium Fusions 17 Trolley Tote. To see one like mine, click here.
For details on other Paul-tested helpful books and
products, click here.
For details on Paul-tested helpful products, click here.
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5. WHAT'S NEW on the Stroke Survivor.com web site.
We're adding helpful new things to our web site all the
time. Coming soon is:
* National Clearinghouse for Long-Tern Care
Information
* Agency for Healthcare Research and Quality (AHRQ)
We have many useful links for survivors, families and professionals on rehabilitation, motivation, and to regain fulfillment posted to our Resource Links pages, click here
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Would you like to view a previous month's newsletter? Visit our newsletter archive, click here.
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6. Stroke/Aphasia Reading problems?
After a stroke, many people have reading and other language problems, known as "aphasia." Hearing a sentence read aloud helps to understand it. You can hear this newsletter read aloud while each word is highlighted on the computer screen with the FREE text reader software.
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FIND INSPIRATION AND SOLUTIONS AT AT STROKESURVIVOR.COM
Stroke survivors, family, friends, professionals...anyone seeking inspiration, motivation, and more!
Find books, audio-books, tapes, and special tools created for stroke recovery by stroke survivor-expert, Paul Berger, click here.
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8. SUBSCRIBE
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Copyright (c) Paul E. Berger & Stephanie Mensh
Permission is granted to reprint these articles
in your newsletter or magazine only with the following byline: "Paul Berger & Stephanie Mensh are speakers and authors. To find out more about their programs and services, visit www.StrokeSurvivor.com
or call (703) 241-2375.
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