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.
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