Stroke Survivor

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

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aMENSH---3x4-cropped02Ask the Expert 
Stroke Caregiver
Stephanie Mensh

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Stephanie at




I heard that Medicare has a cap on therapy payments--speech, physical and occupational therapy. Is this true?


S.S., caregiver, Washington, DC




Yes, unfortunately, this is true. Congress passed a law in 1997 that established a cap on speech and physical therapy combined, and occupational therapy provided outside the hospital. The good news is that every year or two, Congress changes the rules on the cap. For example, it may be possible to get an exemption from the  cap--get more sessions covered--based on your stroke and medical situation.

The amount of the cap is set each year as part of the annual update to the Medicare Physician Fee Schedule. Once the cap has been reached, the Medicare beneficiary is required to pay, unless you get an exemption.

Also, the cap does not apply to therapy services provided by certain hospital outpatient departments, so this might be an option for continuing treatment. Be sure to ask the hospital rehabilitation department's billing office if their services are exempt from the Medicare cap.

Since this changes every year, I suggest checking websites of the national organizations representing speech & physical therapists for up-to-date information on this issue.

We are big believers in therapy, and Paul is proof that survivors can continue to recover function after the insurance runs out. You can stretch the value of your therapy sessions by asking for homework, photos or videotapes of sessions or exercises, hiring tutors, or finding or forming group sessions.




My sister has been diagnosed with Primary Progressive Aphasia. How can I help her, since computers are not an option?


  - T.L., family member




We have met some people with Primary Progressive Aphasia. This form of aphasia is not well understood, however, speech therapy techniques used for language and other skills can help. Also, the therapist may be able to guide you in finding smaller high tech and low tech communication products that don't require a computer. Most states have assistive technology programs that can aid in locating products and financing. Also, you might think about some products used in schools for special needs children.

Non-verbal expression is also very important. This includes dance and movement, music, painting, sculpting, and crafts. Look for classes through the county or state public recreation or adult education departments. These should be accessible to people with disabilities.

Paul has many different ways of expressing himself, and I believe that these forms of non-verbal communication have helped him greatly in leading a full life after his stroke.

For technical information on PPA, visit the National
Aphasia Association's website.




My spouse's stroke has been very hard on our marriage. How do you deal with the frustrations of being a caregiver?


                                   -Jen B., California




I have two tips.  Tip Number One: communicate. Communication is key to any successful relationship, especially marriage. Paul has aphasia, so it wasn't easy, but we learned new ways to communicate with each other (please see my article on communicating). Talking and listening to other people is also importantfamily, friends, and others who may be going through similar personal challenges. And I need to communicate with myself, so I keep a diary. Seeing my feelings in writing helps a lot.




Tip Number Two: When all else fails or when you need a little rewardchocolate. I eat the semi-sweet chocolate chips from the baking aisle in the grocery storemore chocolate for less calories. One time, after dinner, I was shocked to see blood caked on  Paul's paralyzed right hand. We quickly examined him to determine how he injured himself. After a few panicked moments, we realized that a chocolate chip had melted on his hand!




How did you manage all the household chores, as well as the new caregiver's responsibilities after your husband's stroke?


                                      -Ruth, Washington




I didn't try to do everything myself. I focused on the things I do best: advocating the system on Paul's behalf; organizing activities and resources; and working full time. I hired a full time companion to take Paul to therapy appointments, help with his homework, and run errands. I paid an accountant to do our taxes. And some things didn't get done. 




How do you keep a sense of humor?  There are many days that everything seems to go wrong.


-J.H., Durham, North Carolina




I read the comics in the newspaper every day.  They provide a different and funny perspective on jobs, eating, shopping, politics, sports, news, family life, friends, pets, health care, finances, the weather.  I always find something to smile about.  One of my favorite comic strips is “For Better or For Worse,” by Lynn Johnston. In October-November 2006, her strip featured a story line for her character Grandpa Jim, who suffered a stroke, and came home from the hospital in a wheelchair, and unable to talk (aphasia).  For example, the November 8 strip showed Grandpa Jim’s frustration with his situation [click here to read it].  For more on “For Better or For Worse,”
visit their website.


Copyright (c) Paul E. Berger & Stephanie Mensh

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