The final installment about aphasia deals with intelligence. When a person gets aphasia, it's difficult to determine where they are cognitively. The general consensus is that the person's intelligence remains intact, but their abilities to communicate that intelligence have been affected. After all, how do we generally assess intelligence? Language!
We listen to what a person says, how he speaks, and give him directions using language (writing or speaking). All modalities of communication--writing, listening, reading, and speaking--are the ways in which we determine someone's intelligence.
Almost every person who comes into our center is assessed for both language and cognitive skills. Almost every single person performs above 85% on the cognitive tests, while scoring in the severe to mild range for language skills. Believe that the person with aphasia knows what they want to say, knows all of the information they knew before the brain injury, but the methods to get this information to others is more difficult.
I once spoke with a gentleman who was convinced that his wife, having had two strokes and little speech, had no idea what was going on around her. He used this belief to behave inappropriately, and wanted someone like myself to validate his belief. He said, "I can ask her what 2 plus 2 is and she don't know". This was his criteria for believing that she was more or less in a waking coma. Now, I firmly believe that this woman knew what the answer was, but did not have the means to communicate the answer. People with aphasia may need a pen and paper, to have the question written out for them, or to have multiple choices in writing to communicate. The information is in there, it's a matter of finding a way to help get that information out that may take a bit of work.
Sunday, November 29, 2009
Sunday, October 18, 2009
aphasia myth #4
To continue our series, I'd like to introduce aphasia myth #4, which has to do with progression or regression in aphasia. I hope that when you receive speech or other therapies that you have experienced some progress in your skills. This is, after all, the whole point of attending therapy. I want to address a misconception about a patient's skills after he has completed therapy. People will often say to me that they don't want their loved one to "get worse" by not attending therapy.
The idea of "use it or lose it" is generally true in most of life, and can apply to aphasia as well. What this adage means is that if you don't continue to work on and use the skills you've learned, you will see a decrease in those skills over time. In this scenario, you could conceivably "get worse" because you have fallen backwards from the improvement you were making while in therapy. If you imagine a typical line graph, you start at some low number and then the line goes upwards as it travels over time to the right of the graph. There may be some zigzagging and up-and-down movement in which some days are better than others in this progression. No matter what you do, however, you will never return to zero. Zero represents you the day of your stroke or immediately afterwards. If you receive therapy and start to heal the brain injury from your stroke, you will not remain at the baseline of when you had your stroke. Therefore, you will not ever "get worse" in the sense that you will be the same as you were that day or week.
The idea of aphasia recovery would be to continue to make progress, moving that imaginary line upwards and outwards over time. Rest assured that every bit of effort that you put in to your recovery will count over time. Keep working!!
The idea of "use it or lose it" is generally true in most of life, and can apply to aphasia as well. What this adage means is that if you don't continue to work on and use the skills you've learned, you will see a decrease in those skills over time. In this scenario, you could conceivably "get worse" because you have fallen backwards from the improvement you were making while in therapy. If you imagine a typical line graph, you start at some low number and then the line goes upwards as it travels over time to the right of the graph. There may be some zigzagging and up-and-down movement in which some days are better than others in this progression. No matter what you do, however, you will never return to zero. Zero represents you the day of your stroke or immediately afterwards. If you receive therapy and start to heal the brain injury from your stroke, you will not remain at the baseline of when you had your stroke. Therefore, you will not ever "get worse" in the sense that you will be the same as you were that day or week.
The idea of aphasia recovery would be to continue to make progress, moving that imaginary line upwards and outwards over time. Rest assured that every bit of effort that you put in to your recovery will count over time. Keep working!!
Sunday, October 4, 2009
aphasia treatment
Myth #3 deals with what professionals call "time post onsent" or TPO. This is the number of days, weeks, or years since your stroke or brain injury occurred. There is a myth flying around out there, and often miscommunicated by your medical personnel, that you can only make gains within the first few months after your stroke, and that you are finished by one year. This is not so, for either physical deficits or for aphasia. While there is such a thing as a "spontaneous recovery period", research has shown by neuroimaging (functional MRI generally) that the brain can continue to make recovery without therapy up to two years after a stroke. The spontaneous recovery period is that time from your stroke up to two years in which your brain will re-wire itself, clean out the dead cells, form new pathways, and form scar tissue. It will do this with or without treatment. Getting therapy during this time is a bonus, since this is the time in which you will earn the quickest gains.
However, this in no way should be interpreted to mean that after this spontaneous recovery period, you can no longer make changes to the brain or make gains in therapy. This is a common myth. While it is true that you will make faster or larger gains during the recovery period, you can continue to make gains no matter when your stroke occurred. These gains may not be as fast or as large, but they can definitely add up. We have seen gains in persons who have been living with aphasia for 14 years, 5 years, 20 years, etc. The key is to keep going and to keep teaching yourself. After all, if brains couldn't make changes, none of us would ever learn anything! We continue to learn throughout our lifespans because of neural plasticity. Loosely translated, this means the brain has the ability to change and form new connections = learning! If you are able to learn new things after brain damage, which you are, then you are able to continue to improve your speech, language, memory, arm strength, walking, and anything you can think of.
The moral of this story is--don't let anyone tell you that you can't get any better. It may take more time and effort, but it can be done. Get started now! Go!
However, this in no way should be interpreted to mean that after this spontaneous recovery period, you can no longer make changes to the brain or make gains in therapy. This is a common myth. While it is true that you will make faster or larger gains during the recovery period, you can continue to make gains no matter when your stroke occurred. These gains may not be as fast or as large, but they can definitely add up. We have seen gains in persons who have been living with aphasia for 14 years, 5 years, 20 years, etc. The key is to keep going and to keep teaching yourself. After all, if brains couldn't make changes, none of us would ever learn anything! We continue to learn throughout our lifespans because of neural plasticity. Loosely translated, this means the brain has the ability to change and form new connections = learning! If you are able to learn new things after brain damage, which you are, then you are able to continue to improve your speech, language, memory, arm strength, walking, and anything you can think of.
The moral of this story is--don't let anyone tell you that you can't get any better. It may take more time and effort, but it can be done. Get started now! Go!
Sunday, September 13, 2009
aphasia myths #2
Hello everyone and welcome to #2 in the Aphasia Myths blog.
Today I'd like to talk about isolation and aphasia. This is a relevant topic for discussion because there are relatively few aphasia support groups and limited information readily available for caregivers and persons with aphasia. Many people with aphasia are not aware that there are aphasia support groups, or that there is an organization called the National Aphasia Association (NAA)(www.aphasia.org). According to the NAA, approximately 40% of persons with aphasia have no contact with other persons with aphasia. Considering the frequent social and other losses that come when someone gets aphasia, this number is staggering! Imagine having a disorder that robs you of your ability to communicate, that you receive little information about this disorder and your prognosis, and that you can no longer work and relate effectively to others. Then imagine that you don't know that there are others out there like you--that there are others who can provide hope, give advice, provide cameraderie, and have "been there". We, as clinicians and physicians, need to make a greater effort to reach out to those with aphasia.
If you have aphasia, you are one of over one million folks in the U.S.! There are people all over the world with aphasia! Some of them have better communication than you do, some of them do not. Some of them are in wheelchairs, some walk with canes, some walk without any assistance. Some persons with aphasia have severe difficulties with their arms and legs, some do not. Persons with aphasia are young and old, all nationalities, all education levels, all careers, and may have different causes. I encourage you to make the effort to find others with aphasia--you'll be glad that you did. If you join a group and you don't like that group--make your own or find another group. You can find organizations online at the NAA website, or do a search for "aphasia support groups" and your location. Whatever your choice, get involved in your life!
Today I'd like to talk about isolation and aphasia. This is a relevant topic for discussion because there are relatively few aphasia support groups and limited information readily available for caregivers and persons with aphasia. Many people with aphasia are not aware that there are aphasia support groups, or that there is an organization called the National Aphasia Association (NAA)(www.aphasia.org). According to the NAA, approximately 40% of persons with aphasia have no contact with other persons with aphasia. Considering the frequent social and other losses that come when someone gets aphasia, this number is staggering! Imagine having a disorder that robs you of your ability to communicate, that you receive little information about this disorder and your prognosis, and that you can no longer work and relate effectively to others. Then imagine that you don't know that there are others out there like you--that there are others who can provide hope, give advice, provide cameraderie, and have "been there". We, as clinicians and physicians, need to make a greater effort to reach out to those with aphasia.
If you have aphasia, you are one of over one million folks in the U.S.! There are people all over the world with aphasia! Some of them have better communication than you do, some of them do not. Some of them are in wheelchairs, some walk with canes, some walk without any assistance. Some persons with aphasia have severe difficulties with their arms and legs, some do not. Persons with aphasia are young and old, all nationalities, all education levels, all careers, and may have different causes. I encourage you to make the effort to find others with aphasia--you'll be glad that you did. If you join a group and you don't like that group--make your own or find another group. You can find organizations online at the NAA website, or do a search for "aphasia support groups" and your location. Whatever your choice, get involved in your life!
Sunday, August 30, 2009
5 myths about aphasia
This will be a 5-part series about misconceptions or poor information that some folks have received or have given to others. I hope with these postings to help both caregivers and persons living with aphasia to get a better understanding about aphasia--knowledge is power.
For this first piece, I'd like to address the concept of the every-dreaded "plateau".
I'm betting that almost each and every one of you were told at some point that you were no longer going to receive treatment because you had reached a "plateau" (don't take that bet, I know I'm right!). There are a few elements that contribute to this phenomenon. The primary force is the insurance company, because the facility needs to get paid to see you. The insurance company will authorize so many visits for therapy, and then that's it. You can fight for more visits, but your therapist must be on board with this by showing your progress in therapy. The insurance wants to make sure that your visits are 1) medically necessary and 2) that you have been showing progress and that 3) there is a reasonable belief that more therapy would show more progress. This is where it is very important for your speech therapist to present the data.
The speech therapist is the second force for therapy discharge. Your therapist may have more or less run out of ideas or ways to help you. They are bound by hospital rules, insurance rules, and ethics rules. An easy way to change the "plateau effect" is to change the goals or that way those treatments are administered, but this doesn't often happen in these settings for a multitude of reasons.
I say that this plateau is a myth in aphasia because I have always believed and practiced therapy that is designed specifically for each individual. If I am working with you and the evidence is that we aren't "making progress", then I need to change my approach, because what I'm doing isn't working. Saying that you "can't go any further" puts the responsbility on you. Maybe I need to do more in-depth testing for a particular function (e.g., reading) that is complex, or perhaps what I thought would work doesn't work. If I continued to try to teach you something that wasn't working, then yes, you would "plateau". BUT, if I change the way I do the treatment, then perhaps we can find the key to unlocking your individual processing. You may never have been a person who used his hands or face for gesturing and facial expressions before your stroke, so could we get much progress if we try to teach you to do this after your stroke? If we try it a few times and it isn't working out so well, then we need to go to Plan B. Then Plan C. Then... you get my point. My bag of tricks expands on a daily basis.
So, the point of today's blog is to tell you--don't accept that you have reached a "plateau". If you are told upon discharge "Maybe we can re-assess you in a month or so if you've made progress", then ask that professional what their reasoning is for this comment. Do they really believe that if you don't have therapy for a month that you will get better during this time so that you can come back and "make progress"? That doesn't make any sense. If you can get better all by yourself, then why are you coming to therapy? You can continue to make progress and continue learning even years after your stroke. Don't stop trying and get advice from as many professionals and support groups as you can.
For this first piece, I'd like to address the concept of the every-dreaded "plateau".
I'm betting that almost each and every one of you were told at some point that you were no longer going to receive treatment because you had reached a "plateau" (don't take that bet, I know I'm right!). There are a few elements that contribute to this phenomenon. The primary force is the insurance company, because the facility needs to get paid to see you. The insurance company will authorize so many visits for therapy, and then that's it. You can fight for more visits, but your therapist must be on board with this by showing your progress in therapy. The insurance wants to make sure that your visits are 1) medically necessary and 2) that you have been showing progress and that 3) there is a reasonable belief that more therapy would show more progress. This is where it is very important for your speech therapist to present the data.
The speech therapist is the second force for therapy discharge. Your therapist may have more or less run out of ideas or ways to help you. They are bound by hospital rules, insurance rules, and ethics rules. An easy way to change the "plateau effect" is to change the goals or that way those treatments are administered, but this doesn't often happen in these settings for a multitude of reasons.
I say that this plateau is a myth in aphasia because I have always believed and practiced therapy that is designed specifically for each individual. If I am working with you and the evidence is that we aren't "making progress", then I need to change my approach, because what I'm doing isn't working. Saying that you "can't go any further" puts the responsbility on you. Maybe I need to do more in-depth testing for a particular function (e.g., reading) that is complex, or perhaps what I thought would work doesn't work. If I continued to try to teach you something that wasn't working, then yes, you would "plateau". BUT, if I change the way I do the treatment, then perhaps we can find the key to unlocking your individual processing. You may never have been a person who used his hands or face for gesturing and facial expressions before your stroke, so could we get much progress if we try to teach you to do this after your stroke? If we try it a few times and it isn't working out so well, then we need to go to Plan B. Then Plan C. Then... you get my point. My bag of tricks expands on a daily basis.
So, the point of today's blog is to tell you--don't accept that you have reached a "plateau". If you are told upon discharge "Maybe we can re-assess you in a month or so if you've made progress", then ask that professional what their reasoning is for this comment. Do they really believe that if you don't have therapy for a month that you will get better during this time so that you can come back and "make progress"? That doesn't make any sense. If you can get better all by yourself, then why are you coming to therapy? You can continue to make progress and continue learning even years after your stroke. Don't stop trying and get advice from as many professionals and support groups as you can.
Sunday, July 19, 2009
Finding the right speech therapist
During a recent presentation at a local support group, someone from the audience asked me about finding a speech therapist to help them continue working on their communication. Since I am from that area, I could only provide the names of hospitals and outpatient facilities in that area. The problem was that almost everyone in that meeting had already been through those facilities and was not satisfied with the offerings. This is, unfortunately, the state of things at the present time, since finding any therapist is a challenging venture.
Pediatric speech therapists were then brought up, and my response was that this could be a viable alternative if you wanted to perhaps take an indirect route to progress and spend your money doing it. Now, this is not to say that there may not be some talented individuals out there, but in general, you take your problems to the specialists. I understand that some of us cannot afford the specialists--my point is only that for your efforts, you may as well spend the money to get someone who can help you efficiently and effectively. This is not meant to be demeaning to any therapist in general. When my car breaks down, I don't take it to the refrigerator repair person, I take it to the person who knows my car and has been trained for my car.
I hear over and over about how dissatisfied people are or were with their speech therapist. I'm truly sorry for your poor experiences, but it's not all bad therapists out there. Don't let a less-than-desirable experience keep you from continuing to find the right therapist. You are your own best advocate! Ask questions! Demand accountability--we should do this from any professional. Some questions you can ask a potential therapist include:
1)What types of therapy would you do with me? Why?
2) Has this treatment been shown to be effective?
3) What is the expected outcome?
4) How much specific training have you had regarding this treatment or my problems?
Unfortunately, after your speech therapist has graduated from school, there are almost NO continuing education credits (I think I may have seen one, actually)that address aphasia and new treatments or techniques. So most therapists are using techniques that they learned during school and don't know that they don't know.
If I go to a new doctor and I don't like that doctor, or if I feel that that person is not a good match for me, I'll go to find another doctor. In some cases, it has taken me 3-4 specialists to find the right one, but boy am I glad that I did it! I've got the best group to help me now. Be no less dilligent with your health care providers!
Pediatric speech therapists were then brought up, and my response was that this could be a viable alternative if you wanted to perhaps take an indirect route to progress and spend your money doing it. Now, this is not to say that there may not be some talented individuals out there, but in general, you take your problems to the specialists. I understand that some of us cannot afford the specialists--my point is only that for your efforts, you may as well spend the money to get someone who can help you efficiently and effectively. This is not meant to be demeaning to any therapist in general. When my car breaks down, I don't take it to the refrigerator repair person, I take it to the person who knows my car and has been trained for my car.
I hear over and over about how dissatisfied people are or were with their speech therapist. I'm truly sorry for your poor experiences, but it's not all bad therapists out there. Don't let a less-than-desirable experience keep you from continuing to find the right therapist. You are your own best advocate! Ask questions! Demand accountability--we should do this from any professional. Some questions you can ask a potential therapist include:
1)What types of therapy would you do with me? Why?
2) Has this treatment been shown to be effective?
3) What is the expected outcome?
4) How much specific training have you had regarding this treatment or my problems?
Unfortunately, after your speech therapist has graduated from school, there are almost NO continuing education credits (I think I may have seen one, actually)that address aphasia and new treatments or techniques. So most therapists are using techniques that they learned during school and don't know that they don't know.
If I go to a new doctor and I don't like that doctor, or if I feel that that person is not a good match for me, I'll go to find another doctor. In some cases, it has taken me 3-4 specialists to find the right one, but boy am I glad that I did it! I've got the best group to help me now. Be no less dilligent with your health care providers!
Sunday, June 28, 2009
Intensive aphasia treatment and insurance
The current insurance system fails us in many ways, and those of you with aphasia may be only too aware of this failure. One of the first questions I am usually asked is, "Does your program take insurance?" and unfortunately, my answer is "No". The same insurance that decided that you, as a person living with aphasia, had become as useful and productive as you were meant to be with your current therapy certainly won't cover an intensive program. Policies will differ, but generally insurance policies have very limited coverage for outpatient speech therapy.
Additionally, while your insurance coverage can save you some money, it can also be very restrictive in the types, amounts, and frequencies of your treatment. When you come to the intensive aphasia program at The Aphasia Center at Steps Forward, we see you for 6 hours a day in various formats (group, individual, etc.) for 6 weeks. While there is a multitude of research showing the gains to be made using an intensive program versus traditional therapy schedules (2 hours a week), insurance is still far behind in its coverage of this treatment. If you can accept that we want to bring you to your next level of performance, or that we want to help you get back to your preferred activities, then you can accept that we are more knowledgable about your treatment and recovery than the insurance companies. Your insurance may tell you that you can only be seen 3 hours a week, and that during those three hours we, the provider, should only be working on certain goals in certain ways in certain places. I want to have the freedom to do what is best for you, not what the insurance company says is best for you. After all, what is more satisfying to you--being able to identify some numbers on the phone, or being able to read a phone number, dial the numbers, and talk to your relatives? Insurance says that you're fine at the first level and it's not medically necessary to continue, but are they concerned about your quality of life? I doubt it. I can tell you that my son needs plastic surgery to correct some birth defects and insurance doesn't want to cover it because it isn't medically necessary to them.
I certainly hope that the new President can lead us towards a better healthcare system in which the providers can get paid without a fight, the patient and the provider can determine what is medically necessary, more alternative treatments can be covered at a reasonable rate, and employers and employees don't have to shell out so much money only to ultimately argue about coverage and benefits. I hope that this blog has helped explain my current unwillingness to get involved with insurance reimbursement directly. As ever, I am willing to help you get reimbursed if I can.
Additionally, while your insurance coverage can save you some money, it can also be very restrictive in the types, amounts, and frequencies of your treatment. When you come to the intensive aphasia program at The Aphasia Center at Steps Forward, we see you for 6 hours a day in various formats (group, individual, etc.) for 6 weeks. While there is a multitude of research showing the gains to be made using an intensive program versus traditional therapy schedules (2 hours a week), insurance is still far behind in its coverage of this treatment. If you can accept that we want to bring you to your next level of performance, or that we want to help you get back to your preferred activities, then you can accept that we are more knowledgable about your treatment and recovery than the insurance companies. Your insurance may tell you that you can only be seen 3 hours a week, and that during those three hours we, the provider, should only be working on certain goals in certain ways in certain places. I want to have the freedom to do what is best for you, not what the insurance company says is best for you. After all, what is more satisfying to you--being able to identify some numbers on the phone, or being able to read a phone number, dial the numbers, and talk to your relatives? Insurance says that you're fine at the first level and it's not medically necessary to continue, but are they concerned about your quality of life? I doubt it. I can tell you that my son needs plastic surgery to correct some birth defects and insurance doesn't want to cover it because it isn't medically necessary to them.
I certainly hope that the new President can lead us towards a better healthcare system in which the providers can get paid without a fight, the patient and the provider can determine what is medically necessary, more alternative treatments can be covered at a reasonable rate, and employers and employees don't have to shell out so much money only to ultimately argue about coverage and benefits. I hope that this blog has helped explain my current unwillingness to get involved with insurance reimbursement directly. As ever, I am willing to help you get reimbursed if I can.
Sunday, May 3, 2009
Aphasia Caregiver Project
To continue our topic about those of you who have a loved one with aphasia.... I am working with folks who come to the Aphasia Center program, as well as with the Suncoast Aphasia Support Group (a wonderful group of people whom I must thank for helping me get our support group going) on the caregiver project. When I have a person with aphasia who comes to the intensive aphasia program, there are always caregiver or spouse dynamics that must be worked through to make progress with the aphasia. Frequently anger or grieving is still present, and there is resentment amongst family members and the person with aphasia. These negative emotions may not be obvious on the surface, but they can have a huge impact on progress at the program or on the relationship as a whole. Persons who suffer a stroke and have aphasia are twice as likely to get divorced as someone who just has a stroke without aphasia. This tells us that aphasia is a stressful occurrence for everyone involved!
So, because I work with families who have a loved one with aphasia, I see many of the same issues occurring over and over again. It seems very few families are given hope, advice, useful information, or resources when they leave the hospital. Often I am the first person in years to actually explain aphasia or apraxia to them in a meaningful way. I may be the first person who helps the families understand all of the aspects of aphasia. A family recently wondered why the person with aphasia didn't just point to their boat and make cleaning gestures if he wanted to have the boat cleaned. Instead, he started looking through the phone book. The family finally guessed his intent, but was expecting more information. Typically, the person with aphasia doesn't know that they aren't giving you enough information--we are all expected to play 20+ questions without clues! The person with aphasia has problems with speech (in some cases) AND language, so they cannot simply play charades effectively and act out what they want as though only the speech is affected.
In an effort to help more caregivers and persons living with aphasia understand the disorder, provide hope and inspiration, and show that you are not alone (although it may feel that way), we are making a caregiver manual. This manual will have stories of couples and families and their journeys through the unfamiliar landscape of aphasia. If you'd like to contribute your story, please email me at dr.lbtobin@gmail.com and I will send you some questions to help you think about your story while you write it. My hope is that caregivers can then read these stories and identify with someone in the book who may have a similar situation. Send me your ideas!
Dr. Lori
So, because I work with families who have a loved one with aphasia, I see many of the same issues occurring over and over again. It seems very few families are given hope, advice, useful information, or resources when they leave the hospital. Often I am the first person in years to actually explain aphasia or apraxia to them in a meaningful way. I may be the first person who helps the families understand all of the aspects of aphasia. A family recently wondered why the person with aphasia didn't just point to their boat and make cleaning gestures if he wanted to have the boat cleaned. Instead, he started looking through the phone book. The family finally guessed his intent, but was expecting more information. Typically, the person with aphasia doesn't know that they aren't giving you enough information--we are all expected to play 20+ questions without clues! The person with aphasia has problems with speech (in some cases) AND language, so they cannot simply play charades effectively and act out what they want as though only the speech is affected.
In an effort to help more caregivers and persons living with aphasia understand the disorder, provide hope and inspiration, and show that you are not alone (although it may feel that way), we are making a caregiver manual. This manual will have stories of couples and families and their journeys through the unfamiliar landscape of aphasia. If you'd like to contribute your story, please email me at dr.lbtobin@gmail.com and I will send you some questions to help you think about your story while you write it. My hope is that caregivers can then read these stories and identify with someone in the book who may have a similar situation. Send me your ideas!
Dr. Lori
Sunday, April 19, 2009
Aphasia caregivers
Caregivers for persons living with aphasia (PLWA) are often misinformed, confused, scared, and overwhelmed when their loved one experiences a stroke with aphasia. I've found that not many therapists or doctors give the caregivers the right kind of information--what is it? Will it get better? Who can I talk to? Does anyone else have it? and so on. Shockingly few medical personnel will give information about aphasia support groups or the National Aphasia Association website. Very few couples are given encouragement to continue therapies after the insurance runs out. No one is given hope for progress, it seems. If you have hope, you will often be told that you are in denial about your spouse's capabilities.
Frequently, I will see older couples who have been married for 40+ years, in which the husband now has aphasia and the wife is now the primary caregiver. Often, but not always, the husband was the main breadwinner, the finance planner, the leader in many different areas. Now, the husband has aphasia, and the caregiver is left to figure out how to take care of her husband, manage the household and finances, get him to appointments and therapy, and possibly perform nursing duties for personal care. No one asked for this to happen, and now the dynamics of the entire family have changed. The PLWA can often no longer participate in interests he had before the stroke, and for lack of something better to do, will follow his spouse around the house, waiting for some interaction. Friends are often embarrassed or uncertain about the PLWA and won't visit as often. The spouse is now left with many burdens--physical, mental, social.....
you are now the wife, caregiver, nurse, chauffeur, banker, shopper, maid, and sometimes therapist. Who wouldn't feel some stress or pressure in this situation?
I will sometimes have caregivers that are upset because they want to help their spouses with speech therapy, but the husband does not want them to do this. Of the many roles you may now have, your husband has chosen: wife! Be glad, I will tell them. I know you want to help, but it is a two-way street, each participant must be willing to let that other person have more than one role. If one participant is not 100% willing, then so be it! Only the PLWA can decide if he/she wants to get better and who will help with that. You don't need to carry all of the burden--there are people out there, such as myself, who have gone to school for a long time to do this. We aren't related to you, we have no personal history or previous roles with you, and our role is therapist, period. I'm more than happy to help someone become the therapist if that's what both persons desire, but I won't put more burden on either one of you if you don't choose it. I won't automatically assume that since you are the primary caregiver, you should be jumping up and down to get into having therapy at home with your spouse after you've been doing the physical therapy and other exercises, as well as your daily household and work schedules. You have the right to say, "No, I don't want to do this". By letting the therapists push you into this position in which you feel obligated to perform, you are adding stress to an already stressful situation. So you will either say you'll do it but won't, or you'll do it but resent it, or perhaps you'll be happy to do it. There are several possible scenarios. Yes, it's better if there is someone else who will help so that progress can be made faster--does it have to be you? No. Can your children, students, neighbors, church, or other volunteers help out in this area? You still have a life, don't let guilt make you miserable--the world's fate does not hang on your shoulders. Skipping exercises due to real life a few times a week doesn't kill anyone.
The only critical piece is carry-over from therapy to home life, and I find that not many therapists know how to educate caregivers appropriately about carry-over. Since PLWA spend 6-weeks at our facility, carry-over after the session is crucial, but by that time everyone should feel educated and entirely comfortable about communication.
I am putting together a manual for caregivers and I could use your stories for it. Tell me your story--we'll talk about it next time......
Frequently, I will see older couples who have been married for 40+ years, in which the husband now has aphasia and the wife is now the primary caregiver. Often, but not always, the husband was the main breadwinner, the finance planner, the leader in many different areas. Now, the husband has aphasia, and the caregiver is left to figure out how to take care of her husband, manage the household and finances, get him to appointments and therapy, and possibly perform nursing duties for personal care. No one asked for this to happen, and now the dynamics of the entire family have changed. The PLWA can often no longer participate in interests he had before the stroke, and for lack of something better to do, will follow his spouse around the house, waiting for some interaction. Friends are often embarrassed or uncertain about the PLWA and won't visit as often. The spouse is now left with many burdens--physical, mental, social.....
you are now the wife, caregiver, nurse, chauffeur, banker, shopper, maid, and sometimes therapist. Who wouldn't feel some stress or pressure in this situation?
I will sometimes have caregivers that are upset because they want to help their spouses with speech therapy, but the husband does not want them to do this. Of the many roles you may now have, your husband has chosen: wife! Be glad, I will tell them. I know you want to help, but it is a two-way street, each participant must be willing to let that other person have more than one role. If one participant is not 100% willing, then so be it! Only the PLWA can decide if he/she wants to get better and who will help with that. You don't need to carry all of the burden--there are people out there, such as myself, who have gone to school for a long time to do this. We aren't related to you, we have no personal history or previous roles with you, and our role is therapist, period. I'm more than happy to help someone become the therapist if that's what both persons desire, but I won't put more burden on either one of you if you don't choose it. I won't automatically assume that since you are the primary caregiver, you should be jumping up and down to get into having therapy at home with your spouse after you've been doing the physical therapy and other exercises, as well as your daily household and work schedules. You have the right to say, "No, I don't want to do this". By letting the therapists push you into this position in which you feel obligated to perform, you are adding stress to an already stressful situation. So you will either say you'll do it but won't, or you'll do it but resent it, or perhaps you'll be happy to do it. There are several possible scenarios. Yes, it's better if there is someone else who will help so that progress can be made faster--does it have to be you? No. Can your children, students, neighbors, church, or other volunteers help out in this area? You still have a life, don't let guilt make you miserable--the world's fate does not hang on your shoulders. Skipping exercises due to real life a few times a week doesn't kill anyone.
The only critical piece is carry-over from therapy to home life, and I find that not many therapists know how to educate caregivers appropriately about carry-over. Since PLWA spend 6-weeks at our facility, carry-over after the session is crucial, but by that time everyone should feel educated and entirely comfortable about communication.
I am putting together a manual for caregivers and I could use your stories for it. Tell me your story--we'll talk about it next time......
Thursday, April 16, 2009
Intensive aphasia treatment centers
I will frequently get calls or emails asking me if there is an intensive aphasia center near them. While I am pleased that more and more people are finding out about the benefits of an intensive treatment program, I then have a lot of work to let people know that this is a rare service. In North America, there are 4 facilities that provide this service. The original program is at the University of Michigan, and Nova Scotia has a 4-week program every summer for persons living with aphasia (PLWA) and their caregivers. The Philadelphia VA has a 17-day program available only to veterans in that state. Finally, our program at Aphasia Center at Steps Forward has a 6-week program for 180 hours. I try to explain that this is a very time-consuming and laborious service, not only for general overhead, but also to employ the best therapists and to adhere to our very high standards for therapy. There are not many places out there that can support the staff, research, time committment, and ability to survive without insurance for 6 weeks at a time. I know this scarcity doesn't help people who don't want to travel to Florida (or one of the other programs), but I think it does give you a feeling that if we've gone to the trouble to make a center, we must know what we are doing. If you want excellent medical care, you may go to Mayo Clinic, if you want excellent aphasia treatment, make the effort to go to a center, no matter where you choose to go. Please remember that you and your loved ones are worth it. It's always worth it when you invest in yourself! Give yourself permission to go for it!
Thursday, March 26, 2009
The Alternatives
So, you may be one of those people whose insurance has stopped paying. Maybe your insurance doesn't cover speech therapy or you don't have insurance at all. There are several options that may be available to you. I'm going to just discuss speech since this is an aphasia blog, but there may be similar options for other therapies.
If you want to continue to work on your speech, I recommend that you attend a local aphasia support group to get ideas of what resources there may be in your area. You can find a list of aphasia support groups online at the National Aphasia Association (http://www.aphasia.org/). There is also contact information on this website for state representatives. These representatives, such as myself, will tell you what options or services may be available in your area. The NAA also lists research opportunities for which you may qualify. You may be able to receive free therapy for a period of time.
Is there a nearby university that has a Communication Disorders clinic? These clinics usually offer group and individual therapies for a low fee or for free. It's cheap because the sessions are conducted by graduate students, who are supervised by licensed clinical instructors.
There are the software programs as mentioned previously, such as Parrot software or Bungalow software. These are great ways to work on your language skills on your computer. They are not a substitute for real live speech practice, however. While these programs may have indirect effects on your speech or writing, I would recommend doing some research to decide which program would be the most beneficial. Determine if there are demos available before purchasing and test out the different programs.
Some people have obtained grade school grammar or other language books for practice. Or purchased workbooks that some clinicians use. Is there an aphasia program near you? Do some googling to find out.
Some persons have contacted local speech pathologists to find someone who will help them privately. The fee varies depending upon where you are, but there may be someone who can help you. I encourage you to continue to work to continue your improvement. Remember, you get what you pay for, so choose your time investment wisely. It may be worth it to you to pay for an intensive aphasia program so that you make great results with a minimal time investment. Or it may be worth it to you to spread out your recovery over a longer span of time to save money. Whatever your choices, do as much as you can! The only limits placed on you are those you tell yourself! Don't believe the doom-and-gloom story other medical professionals may hand you.
If you want to continue to work on your speech, I recommend that you attend a local aphasia support group to get ideas of what resources there may be in your area. You can find a list of aphasia support groups online at the National Aphasia Association (http://www.aphasia.org/). There is also contact information on this website for state representatives. These representatives, such as myself, will tell you what options or services may be available in your area. The NAA also lists research opportunities for which you may qualify. You may be able to receive free therapy for a period of time.
Is there a nearby university that has a Communication Disorders clinic? These clinics usually offer group and individual therapies for a low fee or for free. It's cheap because the sessions are conducted by graduate students, who are supervised by licensed clinical instructors.
There are the software programs as mentioned previously, such as Parrot software or Bungalow software. These are great ways to work on your language skills on your computer. They are not a substitute for real live speech practice, however. While these programs may have indirect effects on your speech or writing, I would recommend doing some research to decide which program would be the most beneficial. Determine if there are demos available before purchasing and test out the different programs.
Some people have obtained grade school grammar or other language books for practice. Or purchased workbooks that some clinicians use. Is there an aphasia program near you? Do some googling to find out.
Some persons have contacted local speech pathologists to find someone who will help them privately. The fee varies depending upon where you are, but there may be someone who can help you. I encourage you to continue to work to continue your improvement. Remember, you get what you pay for, so choose your time investment wisely. It may be worth it to you to pay for an intensive aphasia program so that you make great results with a minimal time investment. Or it may be worth it to you to spread out your recovery over a longer span of time to save money. Whatever your choices, do as much as you can! The only limits placed on you are those you tell yourself! Don't believe the doom-and-gloom story other medical professionals may hand you.
Sunday, March 15, 2009
After the insurance is gone
I hope that you are one of the people who is dissatisfied when told that your therapy is done when your insurance says it's done. Do not think that since the insurance isn't going to pay anymore, you have gone as far as you are going to go. I have met so many people with aphasia who were told by the doctor or by their therapist that "this is as good as you are going to get", live with it. There is a lot left to be done and to be said when someone tells you this. A lot of people will believe these limiting ideas, lose hope, become depressed, and stop trying to communicate with the world. The only limitation is the one you set for yourself.
The other people will fight, and they will use this experience to push themselves to continue. If your communication is important to you, you will find a way to keep working. You may have been told that there is nothing that can be done for you, but this is not true. I watch it every day at the Aphasia Center. There are many alternatives to consider when your insurance stops paying that are not always ideal, but every little effort you make counts. There are inspirational stories from stroke survivors all around you--Barbara Newborn, Paul Berger, and others--that can provide hope and keep you going. Your insurance may or may not be limited to the number of visits for speech therapy, call them and find out. Does it start over again each calendar year? Does it continue to pay if you continue to make progress? Use all of the resources available to you. Our next blog will help you determine what resources are available. Have comments? Let's hear your story--let it out!!!
The other people will fight, and they will use this experience to push themselves to continue. If your communication is important to you, you will find a way to keep working. You may have been told that there is nothing that can be done for you, but this is not true. I watch it every day at the Aphasia Center. There are many alternatives to consider when your insurance stops paying that are not always ideal, but every little effort you make counts. There are inspirational stories from stroke survivors all around you--Barbara Newborn, Paul Berger, and others--that can provide hope and keep you going. Your insurance may or may not be limited to the number of visits for speech therapy, call them and find out. Does it start over again each calendar year? Does it continue to pay if you continue to make progress? Use all of the resources available to you. Our next blog will help you determine what resources are available. Have comments? Let's hear your story--let it out!!!
Sunday, March 8, 2009
Augmentative/Alternative Communication Part 2
What are some of the alternatives to purchasing an elaborate paperweight (AAC device that does not get used! Just like how your exercise machine becomes a coat rack)? The one I would most recommend is purchasing computer software if you are just looking for something for practice. The two big companies that come to mind are Parrot Software and Bungalow software. I do not have a lot of experience with Parrot, but my facility does use Bungalow. I leave you to make up your own mind. I do know that you can get a CD from Bungalow that has all of their programs in a demo format. Are all of the programs the way I would do a program? No, but that's not to say that they aren't useful for certain types of activities. You can customize the programs to make them harder or easier. For about $100, you can own one of the programs and use it all you want. $100 versus $15000 seems like a good deal.
There are also the old-fashioned types of communication devices, namely communication books. These are just small photo albums or notepads with some words or pictures already written in them. To be used successfully, the persons with aphasia should be able to find the items in their categories and point to what they want to say. I'm sure it isn't wonderful from the person with aphasia's viewpoint, but there are some folks with severe aphasia for whom this type of book could be appropriate.
I am currently reviewing a new device set-up for persons who can type some letters to know what they want to say. This system was sent to me by Dick Myers out of Washington state. I'll provide more details later after a thorough review. Technology is a good thing, and there are several free programs available online that can also help you with your goals. ReadPlease allows you to copy and paste information into the web screen so the computer can read it to you. I will list more programs if there is an interest. See you next week!
There are also the old-fashioned types of communication devices, namely communication books. These are just small photo albums or notepads with some words or pictures already written in them. To be used successfully, the persons with aphasia should be able to find the items in their categories and point to what they want to say. I'm sure it isn't wonderful from the person with aphasia's viewpoint, but there are some folks with severe aphasia for whom this type of book could be appropriate.
I am currently reviewing a new device set-up for persons who can type some letters to know what they want to say. This system was sent to me by Dick Myers out of Washington state. I'll provide more details later after a thorough review. Technology is a good thing, and there are several free programs available online that can also help you with your goals. ReadPlease allows you to copy and paste information into the web screen so the computer can read it to you. I will list more programs if there is an interest. See you next week!
Monday, March 2, 2009
Augmentative/Alternative Communication
Almost every person with aphasia has some experience with an augmentative or alternative c0mmunication device, usually called an AAC device. The devices that I'm going to talk about now are the computerized devices. You may know these by their brand names--Dynavox, Mercury, Say-It!Sam, Lingraphica and others. While many therapists will recommend these devices to their patients with aphasia, my experience has shown me that not one of these persons who gets a device uses it consistently for a long period of time. There are two "benefits" that are sold to you when someone wants you to get a device--practice modules and computerized speaking. Therapists are usually bogged down by the insurance system, may not know what else to do with your case, and figure that an AAC device is the answer to help you out.Practice modules means that there is some part of the machine that you can use to practice speaking--maybe it speaks a sentence for you and you can mimic it eventually. You could also match words to their pictures and other tasks. Computerized speaking means that you will not speak, the machine will. I have found very few people with aphasia who like this option. Everyone I know wants to speak for themselves, and the public at large does not respond well or have patience for someone to use a device to speak. Frequently these devices are bulky (about the size of a laptop computer), which is not easy to carry around, find a place to put it, turn it on, and expect someone to wait while you do all of this. The smaller devices are hand-held, but unless you are able to use both of your hands/arms to hold it and choose things to say, it isn't helpful in the community. This obviously applies to a person who can walk around. A wheelchair mounted device may be more functional for someone in a wheelchair.Why am I telling you all this? I get tired of people with aphasia being told that this device will cure everything and be the best idea. There are alternative out there that your therapists may not be aware of, depending on the purpose of your device. These computerized devices run from $3500 to $15000, even if your insurance pays for it. I find that many of these devices are rarely used after purchase for several reasons. 1) The person with aphasia didn't really want to get it in the first place and the therapist just made it happen. 2)The person with aphasia did not realize that it was to be used to speak for them and does not want to do this 3)The training that has been received is minimal and no one can figure out how to operate it 4)It is too complicated to use 5)The person with aphasia finds it too large or heavy to lug around 6) Without the constant support of the therapist, the person with aphasia loses interest. Am I advocating that you don't get a device? Maybe. It's an individual decision, I just want you to be aware of what you are committing your (and your insurance's) money to. What are the practice alternatives? Stay tuned for the next segment.....
Wednesday, February 4, 2009
Support Group
Aha! It has been done. The first monthly aphasia support group will take place at our Steps Forward office on March 5th from 6 to 7-7:30 p.m. I will provide the food and drinks for our first meeting. Everyone is welcome--students, professionals, persons with aphasia, co-survivors, friends, family, etc. The plan is to include fun, food, activities, socializing, support, resources, and community events. I'm asking folks to contact me for this first one and let me know if they are coming so that I can plan the food accordingly. I will see you there on the 5th of March!!
Lori
Lori
Currently putting together the plans for an aphasia support group(thinking about pre-meeting to discuss a meeting....) at our office in St. Petersburg. Just trying to find a good day and time now, as well as a good start date. Initially I think I would provide the pizza and drinks, then we could have everyone pitch in for future meetings. I'd like to have a person living with aphasia or their spouse co-running the event, with me eventually taking a back-seat (or at least the passenger seat) for future meetings. After all, I don't have aphasia and neither does anyone in my family, so what do I know about living with an adult with aphasia (yes, I do know about children with aphasia!) Let me know what you think.
Lori
Lori
Sunday, February 1, 2009
welcome to aphasia info
Welcome to our new blog! We'll see if I can manage this type of technology. Our hope is to provide information and education to persons with living with aphasia, their families and caregivers, professionals, physicians, and students. There tends to be a lot of misinformation out there regarding realistic expectations for recovery of aphasia that is disempowering and provides little hope for those living with aphasia. The bottom line is that progress does not stop just because your professional (or your insurance company) tells you that you are done. There is very little information out there about aphasia research that is easily accessible or understood by the average person. We hope to remedy this by providing period summaries of new treatment methods and options.
Saturday, January 31, 2009
My tech skills
I am trying very hard to get his blog to feed into my website, but I can't seem to get it to work. I hope to have this going soon so that it's easier for readers to get this information. I am working on developing an aphasia support group at our office in St. Petersburg. To my knowledge, the only groups around are for stroke in general--there are not any specific to aphasia and that's a shame. So, here's to figuring out technology so that I can get these announcements out!
Thursday, January 29, 2009
Thoughts on telepractice sessions
We've been working to try to help out those of you that live just far enough away to make a more costly program (yes, I'm talking about those of you up in New Port Richey, aka nowhere). Telepractice is a growing method of treatment delivery, so we looked in to it to see what the rules are and found out that there really are no rules. State licensure seems to be the only thing keeping us from coming into homes around the world! I'll settle for Florida..... There's a new tab on the website (http://www.stepstherapy.net/) about the telepractice. With growing technology, which I can't claim to fully understand, I think there are so many more possibilities for treatment delivery than showing up at some hospital for a few hours a week. Remember when there were housecalls? No, I don't, but we can make virtual housecalls! Works for me.
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