3. Find out what the watershed implies about the deficits that the stroke victim will experience. Don’t ask for a prognosis about recovery. It will likely be inaccurate and pessimistic, particularly if the stroke victim is elderly. What you are looking for here is enough information to start getting knowledgeable about the stroke victim’s rehabilitation program, which you will need to lead. You will need the assistance of medical professionals for this, but they will not have high goals, will not spend sufficient time with the person, and will not have the level of motivation that you have.

The more you know the more you will be able to demand a high quality rehabilitation program, to insist on recovery goals that are above the minimum, and to recognize when sufficient attention is not being paid to specific rehabilitation needs of your loved one, both in the hospital and when the person returns home.

The more you know the more you will also build confidence in the person who has had the stroke. If you can talk knowledgeably they will feel more in control and less anxious and so will you.

What To Do In The Few Days Following A Stroke: Get Organized

1. Get on the same page with family and friends about your unified purpose: to help your loved one improve to their absolute maximum capability. Be aware that the hospital will most likely give you a profoundly conservative message: they will set low goals for his recovery and a provide a pessimistic or uninspired prognosis. The older the stroke victim is, the more likely they will write off his chances for improvement. (This impression is not mine alone. It is a message I found repeated over and over in the accounts of stroke victims.)

Have a meeting with your family--over coffee in the hospital cafeteria, by arranging a conference call over the telephone, through an “instant messaging” conversation over the internet, by whatever means--to agree on the following:

a) Your collective aim is to help your loved one improve to their absolute maximum capability.

b) That you do not need to know right this instant how that will be achieved, but that you are committed to learning how. Agree that you are not going to “dumb down” your expectations just because at the moment you don’t know how you are going to achieve them.

c) Agree on what kinds of behaviors are unacceptable: talking loud, talking baby talk, interrupting the stroke victim, not disclosing important information, not disclosing your plans regarding a full scale commitment to his recovery, etc.

d) Agree on how you are going to communicate with people who live at a distance. Agree, also, on how you are going to stay on top of the progress, the various emerging needs for information or errand-running, etc. We had a daily “orienteering meeting” first thing in the morning at the hospital, and once Dad went home Sharon and I had nightly phone conversations and Mother was in charge of keeping Steve, my brother, abreast. Don’t leave this kind of “progress planning” to chance--decide how you are going to proceed.

2. Buy a spiral notebook that has pockets in it to keep loose papers. Keep track of what you are learning, what the medical professionals are recommending, what questions you have that need to be answered by a medical professional, someone who has been through the experience before, or a community agency. You will have too much on your mind to remember everything. Write it down in one place. This system will keep you from becoming unnecessarily frustrated and worn out in the coming months.

On the inside cover write the name, toll-free number, and identification number of your loved one’s insurance company or HMO so you will always have it handy.

Write down any frequently called numbers, including the number of the hospital.

3. Find out the meaning and purpose of any tests given to your loved one--whether they are blood tests, CT Scans, Language Tests, Motor Skills Tests, or whatever. Find out:
a) The name of the test and its purpose (You want the name of the test because once you are out of the hospital and on your own, you might want to request a subsequent test to measure progress. It will be important for the medical professional you are working with in your own community to know the name of the test and its results.)
b) What a “normal range” is for a person who has not had a stroke.
c) What the tests indicate regarding the damage in the brain and what that means for the deficits the stroke victim will experience early on.
d) What therapy--whether speech, physical, or drug--can contribute to improvement.
e) What the results are--and get a copy of the results in writing--even if you don’t understand them. Someone you will be working with in the coming months will understand the results and it will be useful to be able to have the information in hand, rather than having to request it in writing from the hospital. Keep these results in your notebook so they are readily available.

4. Have as a top priority increasing the stroke victim’s sense of control. One of the things that produces tremendous anxiety in anyone--and certainly in a person that has experienced a stroke--is feeling a loss of control. Ensure that you design the way that you talk to him so he isn’t struggling to understand you. This might mean facing him so he can see you, keeping your sentences short, using pictures or gestures to illustrate what you are saying. It does not mean talking to him loudly or like he is a child.

Design what you have him do so that he begins to feel in control even of small, brief, basic things. Introduce to him the things he did routinely in his life before the stroke. Bring him the mail to open rather than opening it for him. Include him in family decision making. Let him order his own meals. Ask him if he wants ice cream rather than assuming that he does and bringing it to him. You will have to be much more conscious of how, in the interest of being kind, you are, in fact, taking away his control. He won’t have much in the beginning so it is important that you don’t miss any opportunities.

5. Ensure that every family member goes to at least one of each kind of therapy session with the patient--speech, recreational, occupational, and physical. Any family members who will be doing the therapy once the patient goes home should go to multiple sessions and watch carefully. Take notes. Notice what the therapist does and doesn’t do, how she ensures success, what she does when the patient struggles, what she seems to be looking for. Learn all you can because you will be on your own soon enough.

Remember that the stroke victim is utterly overwhelmed by the demands of ordinary life and the fear of what the future will bring. They do not have the energy or capacity to help design a rehabilitation program. Do not mistake this for lack of motivation or their lack of readiness. They are tired. For some, the stroke itself has damaged part of their brain that enables them to take initiative. You have to lead the way.


What To Do Before You Leave The Hospital: Ask Questions

1. Find out what formal rehabilitation programs are available. Does the hospital have an intensive in-patient or out-patient rehabilitation program? If not, find out where the nearest intensive programs are. Ask:

• What would be the likely length of stay for your loved one?
• What gains could be expected?
• How much does it cost?
• Is the therapy covered by your insurance? (You might have to call your insurance company or HMO directly to find this out.)
• If the in-patient or out-patient facility is not located in your community, what are the options for housing close to the rehabilitation center?

2. Find out what professional rehabilitation services are available. What therapists in your community specialize in the kind of deficits the stroke victim will need to recover from? Be sure that you get a list of therapists who have expertise in the specific recovery your loved one needs. Some therapists specialize in swallowing, others in word articulation, others in speech recovery in children. Be sure to have a good assessment of what the needs of your loved one are and the specialty of the recommended therapists. Ask:

• What kind of program should you expect the therapist to deliver?
• How often will therapy be needed?
• For what length of time should the stroke victim be expected to be in therapy?

3. Are there support groups in your community for stroke victims and their families?

4. If you need special equipment, who in your community supplies the equipment and what kind of costs will you likely incur?

5. Find out what to expect regarding the stroke victim’s re-entry into his familiar environment.
• What is the likelihood of depression and what is the best way to handle it?
• What specific physical accommodations need to be made?
• Are there any accommodations necessary to the stroke victim’s pre-stroke routine?
• How soon can the person be expected to resume activities they used to do?
• What does the family need to be prepared for or to prepare their loved one for?


What To Do To Carry Out A Rehab Program At Home: Develop A Plan

1. Order materials that will guide you in your home therapy. Speech and occupational therapists can be a valuable support, but the heavy lifting is done by family and friends. The recovery will progress slowly if the only work is done in the 3 - 5 hours a week that a therapist will be present. And it is quite likely that they won’t hand over their materials. I experienced them to have an odd and infuriating proprietary interest in their professional expertise. It will take time for the materials to get to you, so the sooner you order them the sooner you will have them to peruse and assess whether they will be helpful. You can send back any materials that seem inappropriate, too advanced, or not advanced enough, so over-ordering is not a concern.

The two places I found to have the most high quality materials are:

a) Wayne State University Press
Web Site (where you can order directly): www.wsupress.wayne.edu
Phone:1-800-SWU-READ (1-800-978-7323)
Address: 4809 Woodward Avenue, Detroit, MI 48201-1309

b) Visiting Nurse Service
Web Site (where you can order directly): www.vnsa.com
Phone: 330-848-6225 and ask for speech therapy Guide Coordinator
Address: 1200 McArthur Drive, Akron, OH 44320
General Phone Number: 877-873-8672

Additionally you can find support and information from:
The National Stroke Association
Web site: www.stroke.org
Address: 8480 East Orchard Road, Suite 1000, Englewood, CO 80111-5015
Phone: 800-STROKES (800-787-6537, or 303-771-1700) Fax: 303-771-1886

2. Talk with the stroke victim and establish a goal--something they really enjoyed doing pre-stroke that they would like to get back to. It isn’t important that you know how you will help the person accomplish the goal. What’s important is that it is something the person would really like to do. Your rehabilitation program will be centered around this person achieving this goal, so it needs to be something important to them. For my father, what he wanted to do more than anything was fly again. To everyone else this seemed beyond his reach. They discouraged us from setting that as a goal because they feared his failure in reaching it would increase his likelihood of getting depressed. Instead, what it did was give him the endurance, discipline, and will necessary to plod on especially when it seemed the most futile, difficult, and tiresome.

You know this person, so it is likely you have a good idea what it is that most energized or fulfilled them pre-stroke. Push them to choose a goal that is a stretch.

When you develop your program, this goal will be the centerpiece. When the stroke victim feels as if the exercises he is doing are irrelevant or uninspiring, it is your job to relate the exercises back to the goal the stroke victim established for himself at the beginning. This will also give you, as the person overseeing his rehabilitation, a context within which you will be able to see opportunities to make his exercises meaningful. Because Dad wanted to fly, we chose the book Flight Of The Gin Fizz written by a deaf pilot for Dad to read aloud from. The content of the book was as inspiring as his progress in the fluency of his reading.


3. The rehabilitation program you develop will include family meals, doing errands in the community, having friends and family over, getting the stroke victim back to doing chores at home as he did pre-stroke. It is an overall plan that is bigger in scope than just the rehabilitation exercises. As you develop this plan, make sure everyone has a meaningful role. The mistake my sister and I made was that, in an effort to relieve Mother from the stress of the situation, we relegated her to an observer role--she didn’t have any meaningful work to do to participate. The rehabilitation program is an all day affair and everyone needs to participate actively in some part of the process.

4. Spend an afternoon at the bookstore going shelf by shelf through the Games section and the Teacher Resource section. Choose books that have helpful exercises that are at the level your loved one is at in reading, writing, math, telling time--whatever the deficits are. These will help you put together daily lessons.

5. If you don’t feel comfortable doing the lessons yourself or are unable to, consider hiring a retired teacher in addition to the speech therapist. These are experienced people who know how to teach and are often eager to spend several hours a day with your loved one. You need to be as careful in selecting these helpers as you are in selecting a speech therapist. You need someone the stroke victim feels comfortable with, someone who can adapt to the special needs of the stroke victim and someone who can think creatively about how to help the stroke victim learn.

6. Once you know the stroke victim’s goal and the skills necessary to achieve that goal (for my father, these were speaking, reading, writing, listening, thinking, and computing) you need to put together a written plan. Go over this plan with your loved one. It will help them understand the big picture and will help them feel as if the lessons and activities--which will sometimes be grueling and sometimes be boring--have an overall intention and purpose.

Our overall plan was quite straightforward and gave Dad tremendous relief. It started out like a basic outline, and as we learned more about what was needed and discovered more exercises, we expanded it, so it became an evolving document that was a helpful map. It looked like this:

I. Reading
A. Understand the alphabet and its sounds
B. Learn “sounding out”
1. Flash cards with letters and single syllable words
2. Flash cards with more difficult words
3. Flashcards with difficult words and sentences containing the words
C. Reading aloud daily
1. From Flight of the Gin Fizz
2. From The Ornery Bunch
3. From the daily paper
a. Headlines first
b. Articles
c. Read silently then test for comprehension


II. Speaking
A. Reading aloud for fluency and accuracy
1. practice word substitution
B. Synonym exercises/Antonym exercises
1. Reading aloud using word substitution
2. Playing “Taboo”
3. Flash card exercises
C. Talking on the telephone
1. Making calls
2. Taking calls
D. After dinner conversations

III. Writing
A. Writing simple words that I say
B. Picking a flashcard
1. Writing a phrase containing the word
2. Writing a sentence containing the word
C. Picking two flashcards randomly
1. Writing a phrase containing the two words
2. Writing a sentence containing the two words
D. Writing letters to family members
E. Writing checks to pay bills
F. Writing “To Do” lists for his errands in the afternoon

IV. Listening
A. I read a short paragraph and he answers questions about what was in the paragraph
B. Summarizing a news report on the radio or television
1. Verbally
2. In writing

V. Thinking
A. Analogy games
1. Word analogies
2. Picture analogies
B. What word doesn’t belong? game
C. Wordles game
D. Memory games
E. How many in a category? games (warmup with these daily)

VI. Computing
A. Number recognition
1. Copying numbers that I say
2. Reading numbers from flashcards
B. Addition
1. Simple single digit addition from flashcards
2. Double digit addition from flashcards
3. Column addition using a calculator
4. Column addition by hand
5. Fractions
6. Mental math games
7. Problem solving using addition (story problems)

C. Subtraction
1. Simple single digit subtraction from flashcards
2. Double digit subtraction from flashcards
3. Large number subtraction using a calculator
4. Large number subtraction by hand
5. Fractions
6. Mental math games
7. Problem solving using subtraction (story problems)

D. Multiplication
1. Multiplication tables
2. Problem solving using multiplication (story problems)
3. Mental math using multiplication
4. Multiplying complex problems using the calculator
5. Multiplying complex problems by hand
E. Division
1. Flashcards on basic division
2. Division using the calculator
3. Division by hand
4. Mental division
5. Problem solving using division (story problems)

7. Once you have an overall plan, develop a plan for each day. Our “school” day started at 8:00 and went until noon. We divided those four hours into 30 minute sections with specific activities for each section, including at least a 5 minute break every 30 minutes and a longer break around 10:00. We went over this plan at the beginning of every morning with Dad so he understood what he would be learning that day. Each day didn’t differ that much from the day before unless we were introducing a whole new concept (like the day we started multiplication tables). What was different was the exercises we chose to use.

I always put this daily schedule together the night before. It made it easier for me to sleep for one thing, and I was able to think about what he needed right at that moment in order to feel both supported and challenged. I drew from exercises in the materials I had purchased. I had gone through each of these books when I first bought them and put post-it notes on the pages I thought had particularly good exercises. Additionally, I notated the post-it notes so I could see without opening the book what the purpose of the various lessons were, so I was able to turn to them quickly. This made each evening’s lesson planning easy and on-target with my father’s needs.

A sample for our daily schedule looked like this (this comes from a day about 4 weeks into the rehabilitation process):

8:00 Read the paper silently (this occurred casually, in the living room with a cup of coffee)

8:30 Quiz on comprehension (questions about what he had read)

8:40 Read an article of your choice from the paper out loud

9:00 Break

9:05 Warmups--Categories
• How many items can you name in the category “things that are hot” in one minute?
• How many items can you name in the category “musical instruments” in one minute?

Warmups--Memory
• Look at this picture for 1 minute. How many objects can you recall?


9:30 Break

9:35 Read aloud from Flight of the Gin Fizz
Go over flashcards of words you had trouble with
Calculate and record words per minute

10:00 Juice Break

10:15 Analogies
What word doesn’t belong?

10:45 Break

10:50 Flashcards of difficult words
Writing sentences from flashcards
Make a list of errands you need to get done today

11:30 Break

11:35 Reading aloud
Flashcards of words you had trouble with
Calculate and record words per minute

12:00 Lunch


8. As you develop your daily lesson plans be vigilant about making the lessons relevant to the stroke victim’s life. As much as you can make the lessons seems immediately applicable to their goal and to resuming their life activities pre-stroke the more engaging the lessons will be.

9. Develop a way to track progress. We established two ways. One was a three ring binder where we dated and filed every worksheet Dad completed, every article he read, copies of every letter he wrote. This was to have a record of overall progress.

The second thing we did was establish smaller ways of tracking progress. We kept track of his progress on words/minute when he read, number of errors/multiplication table, number of items/category/minute. Any specific skill he was working on we would track the specific progress.

The stroke victim is struggling so hard and often is so appalled at how much trouble he is having that it can seem to him like he isn’t making any progress at all. At those points he is likely to mistrust your subjective judgment that he is doing fine. Having an objective way of reflecting to the person that he is making great progress boosts his morale and yours.

We have also found that the three ring notebook is the most substantive artifact of what we accomplished as a family. It is like our museum, our scrapbook of a harrowing journey. Our personal transformations are one record of the impact of my father’s stroke. But the record of what we did inch-by-inch to make those transformations happen--both individually and as a family--is priceless to me. This slim 3-ring binder stuffed with papers represents the most meaningful, life-transforming work I have ever engaged in and I am glad we have it.

10. In the beginning the stroke victim will have neither the energy nor the inspiration to participate in designing his rehabilitation program. He will be fully--and frighteningly--dependent on you and on the professional therapists to put together an effective program. As he gains more skills and is less overwhelmed by the nature of his deficits, however, he will begin to have either ideas or concerns about the course of his rehabilitation. This is a good sign and all his concerns and suggestions should be taken seriously and pursued.

For example, at one point Dad was concerned that perhaps he needed an experienced teacher to help him with his reading. I pursued this suggestion by calling several teachers I knew and getting suggestions from them about who might be helpful and how they might work with Dad. We talked this over and he decided against that change in his therapy. At another point he expressed concern that the current therapist we were working with was not adding sufficient value and was consuming four hours a week of his time that he felt he could use more productively. We talked that over and developed a strategy for decreasing our involvement with that therapist.

The point here is to keep increasing at any opportunity the person’s sense of control--both in the activities of the household and in the design of his rehabilitation. At various times you might know that the line of thinking the person is pursuing is not a good idea--I had a feeling that Dad did not need to hire a reading teacher, for example. Nevertheless, having Dad surface the issue and then make a decision about it was important to his rehabilitation, his self-esteem, his increasing independence and his overall sense of control.

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What To Do To Get Professional Support: Hire the Right Therapist

1. It’s important to hire a therapist who has experience in working with the specific deficits that the stroke victim is experiencing. We only found out after we began working with our first therapist that her primary work was with children. We didn’t find out until after we hired our second therapist that his primary specialty was in helping people swallow. Our problem was that we didn’t know what to ask. If a therapist says they work in all areas of recovery, ask them what they do most and get the names of people they are currently working with to call for references. Specialties include:

Speech therapy:
• Working primarily with children
• Teaching people how to swallow
• Effects of aphasia including speech articulation (being able to say the sounds of words clearly), speech fluency (speed and accuracy of speech), reading, memory
• Math and numbers

Physical Therapy
• Paralysis
• Spacticity
• Exercise with and/or without special equipment
• Accommodation strategies

2. Neither therapist that we worked with gave Dad a formal evaluation of any sort. Assessment of his progress was purely subjective. But there were particular arenas we knew he needed improvement (fluency, word production, and memory for starters) and I assume there are areas they test that we didn’t know about. Find out what formal assessments they will do and with what frequency. Ask:

• How will you assess the patient initially and on an ongoing basis?
• What assessment tools will you use?
• What do these assessment tools measure? What are the ranges? What is considered normal?
• How will improvement over time be measured?
• What improvements would you expect to see?

3. Determine if the therapist has an overall strategy. With both the therapists we hired we experienced an “off the cuff” approach. The exercises didn’t progress from week to week in a logical progression. They never presented us with an overall plan of what they would be working on and how they broke that down into individual exercises. It wasn’t long before it all felt ad hoc. For Dad the three sessions with the therapist each week became a hodgepodge of random exercises. Connecting the work to an overall strategy was important to keeping up Dad’s morale. Ask:

• What specific capabilities will you work on?
• What is your overall concept of the therapy process that can make the individual activities hang together?
• How will you go about working on these capabilities?
• What materials will you use and how will you explain to the patient how these exercises will help?
• What will a typical session look like?

4. You want a therapist who expects you to be involved between sessions and will give you guidance about how to keep progress going in a step-by-step fashion. You will need a therapist who is willing to teach you as well as to teach the stroke victim. If they have no specific expectations for your role between sessions or if they have the point of view that the therapy should be left to professionals, that’s a trouble sign. You need a therapist willing to give you specific assignments and mileposts so you can play an active role in keeping the therapy progressing. Ask:
• In general, what role do you believe the family members play in therapy?
• Specifically, what do you expect the family members to do to provide support in between sessions?
• What kind of time commitment do you expect from family members and from the stroke victim on a daily basis?
• Will you provide materials and specific instruction and assignments to work on between sessions?

5. You need to make sure the therapist is as committed to aggressive therapy as you are. In part you want to know if the therapist believes that the point of the therapy is just to get the stroke victim to some acceptable standard of safety or functionality or if they are as committed as you are to the stroke victim resuming as normal a life as they possibly can. You also want to find out if they view the therapy as a process defined by time (e.g.: 10 sessions) or a process defined by the stroke victim achieving his goals (e.g.: we will work until he is able to speak fluently and resume his work on the board of directors). Ask:
• How frequent will the sessions be?
• What length of time will you spend with the patient each session?
• How long will the therapy process last?
• Will you come to our home or conduct the session in your office?
• Can we call you with questions between sessions?

6. Make it clear early on that you want to evaluate whether you believe the therapy is achieving the goals you set out. Establish a date early on to assess how the therapy process is going and what might need to be changed. If you establish this date in the beginning it alleviates any awkwardness if you find yourself dissatisfied as the therapy process unfolds. Also, if you establish goals you are trying to achieve it gives you a basis to have this conversation.

7. Get the details about financial arrangements clear up front so you are not surprised. Ask:
• How much does the therapy cost?
• How do you bill?
• Will you submit insurance claims on our behalf?
• What are likely to be the additional costs of equipment or supplies?
• Will these be covered by insurance?


What To Do Once You Get Home: Return To Normal ASAP

1. The first thing we did once we got back home was put out a sign near the front door which read “To Our Friends: Thank you for visiting. It means a lot to us. Please limit your stay to 10 minutes because Dad gets tired easily. Thank you for coming.” We were so grateful when people came to visit. It was hard for many of them because they didn’t know what to expect. Being clear up front about Dad’s limitations eliminated the awkwardness of having to ask them to leave or of having Dad’s fatigue make him struggle with the visit. People were glad to know the parameters and in general were respectful of the time limitations.

2. The second thing we did was when we answered the door we reminded people not to finish his sentences for him. Again, in an attempt to be helpful, people would often finish Dad’s sentences for him. They didn’t realize that this was terribly frustrating to him and made him feel even more isolated. Letting them know in advance not to do this made their visits far more satisfying to Dad and increased their understanding of how they could help.

3. Spend time thinking about what interested your loved one pre-stroke and get back to those activities as soon as possible. Did he enjoy movies? Did he like barbecuing hot dogs on the porch? Did he like to go on drives? Did he enjoy opening the mail? Was it his custom to take the dog on walks? Was he responsible for paying the bills? You want to get him back to doing things he enjoyed and contributing to the upkeep of the household as soon as possible. Don’t be fooled into thinking you are supporting him by alleviating him from these duties. This will only delay or undermine his recovery.

4. Re-establish your social life. Invite over friends he enjoys spending time with. Make dinner time an opportunity to talk over the day, make plans, or reminisce.

5. Get the stroke victim talking by asking them questions that interest them. We asked Dad questions about family history, about how he got into business, about his service in the Korean war. We also asked him advice on problems we were currently muddling through--Sharon was buying a house, I was mulling the difference between stocks and mutual funds, my husband was starting a new career. These all provided ample opportunity to seek his advice, as we would have done pre-stroke. In addition to giving Dad something interesting to talk about--to practice talking--we found out things about our family and about our father that we never new. Like my sister said “why did it take Dad having a stroke for me to ask these questions?”

6. Plan errands in the community. I called them “field trips.” We went to the hardware store to buy a new mailbox, to the post office to pick up mail, to the grocery store to buy ingredients for ginger snaps, to the produce stand to buy dinner, to the car lot to look over the new Dodge trucks. Take part of each afternoon and get out of the house. Sometimes we went on a drive to look at where Dad thought the next area of the valley was going to be developed, or where Pearl and Leo had their first ranch. It doesn’t matter what you do. What matters is that you do something. And when you go on errands, make sure your loved one is not just tagging along, but is doing the errand.

What To Do To Stay Energized: Take Care of the Care Givers

1. Dump an extraneous obligations that don’t re-energize or fulfill you. Either dump them permanently or take a “leave of absence.” If you have been serving on a board of a local organization and find the work either dull, time-consuming or too worrisome, resign. If you have been in charge of a volunteer effort at your local school or church and can’t keep up with the demands despite how worthy you believe the cause to be, ask to be relieved of your obligations for a period of time. If you are the person your group of friends counts on to organize monthly get-togethers, ask someone else to take over. Get rid of anything in your life that does not give you immediate reward, pleasure, relief, or happiness. Throw overboard anything that feels more like an obligation than a joy. There will be plenty of time later to pick them back up. Or you might find having fewer obligations is a lifestyle you’d like to continue. You can make those decisions later.

Make a list : what activities would you like to give up?

Call the appropriate people and let them know your priorities are elsewhere right now and that you are sure they will understand. Be firm.


2. Don’t tolerate having people in your life who are draining. That should probably be a general rule of thumb, but the advantage you have now is that people will generally respect your needs. You can say “I am really limiting my social life so I can concentrate on Bob right now. I hope you understand.”

3. Think about what it is that does give you pleasure and plan time to do those things. Do you like to go to the movies? Do you like taking walks with a particular friend? Is there a friend in a distant state that you enjoy talking to? Does drinking a pot of tea and reading good book relax you? Is reading the morning paper with a strong cup of coffee the way you’d really like to start your day? Do you enjoy the aerobics class at the local health club? Is there a particular hobby you enjoy like knitting, wood carving, baking, oil painting, model building or whatever?

Make specific times in each day or week to do those things. I don’t mean have the good intention of doing it, I mean schedule it. Otherwise it won’t get done. Even if it means spaghetti with bottled sauce for dinner tonight, it’s important that you have time to do something for the sole purpose of paying attention to you.

What do you really enjoy doing? What gives you pleasure or makes you relax?

Carve out specific times in each week to do these things, even if it means giving up other obligations of the household. When are you going to routinely do the things that give you pleasure? Be firm.?
If You Know These Words Related to The Stroke
You’ll Be Taken More Seriously

Agraphia means inability to write. It is rarely the initial and sole disturbance as a result of stroke, but appears in combination with other deficits.
Alexia means inability to read.
Aphasia means inability to understand or express speech.
Apraxia means inability to carry out familiar, purposeful movements. This can disable the person in a variety of ways. In speech, for example, words are often spoken correctly, but in the wrong order. In routine activities of life, for example, the stroke victim might be unable to dress themselves, particularly on one side of the body. What is happening is that they know what they want to do, but they cannot make their body do it. They might be unable to carry out a command like “go get the paper,” even though they understand the request and know how to do it. Or they find themselves unable to use a familiar object properly, like how to use a spoon or how to dial the phone or what to do with a comb.
Ataxia is when a person has poor balance or is unsteady when walking or standing.
Dysarthia means slurring of speech that is a result of weakness in the mouth, the tongue or the jaw.
Dysphagia means difficulty swallowing.

Ischemia means lack of oxygen. If ischemia happens over a long enough period of time it will produce an infarct (dead tissue). The brain can tolerate a cutoff of its blood supply and therefore a cutoff of its oxygen supply for 4 - 8 minutes before the tissue starts to die and irreversible damage occurs. That does not mean the symptoms of that damage are irreversible, however, an important distinction. The brain can learn to use other pathways to overcome the deficits a stroke produces, but the brain does not repair that damaged area, it can learn to use different parts of the brain to compensate.

Loss of oxygen (ischemia) in the brain does not produce pain. Ischemia in the heart does produce pain. That's why heart attacks are painful and strokes aren't.

Infarct or Infarction means the actual tissue that dies from lack of oxygen. Medical professionals will refer to “the infarct” or “the infarction” when referring to the physical damage to the brain resulting from the stroke.

Lesion is a general term meaning harmed tissue, not necessarily harmed by lack of oxygen. So, in the case of stroke, an infarction and a lesion are, essentially, the same thing. Sometimes medical professionals will refer to “the lesion” in the brain when referencing the stroke damage. They could as easily refer to “the infarction” in the brain.
Paraphasic Speech is when a person uses wrong words or words in nonsense combinations.
Perseverate is when a person repeats a response, like when a person answers a question correctly, but gives the same answer to a succeeding question.

Plaque refers to the deposits on the inner wall of the arteries that results in heart disease (called “atherosclerosis”). We often refer to this as “hardening of the arteries” or “clogged arteries.” This plaque, caused by too much animal fat in the blood, is composed of fat, cell debris, collagen, and, in older people, calcium. Often people refer to “plaque” as “fat” or “a clot” because fat is the culprit in heart disease. It is the plaque that breaks off and travels through the blood stream until it gets stuck, causing a stroke.



From The Ground Up
by Susan Edsall