Snippets.
The 'Snippets' below were posted on various websites before. I put them on here as new ones become available. It's handy to keep track of them. They are meant to be conversation starters. Patient and caregiver are bound to make mistakes, and there is nothing wrong with it. It's perfectly normal. Problems arise if they don't talk about these mistakes. Hopefully these snippets pave the way for a fruitful conversation.
So, here goes:
# 1. What’s to come – and why.
Over the following months I intend to write a collection of short posts.
They are about stroke, disability, rehabilitation, and related issues.
It’s not my intention to tell anyone what’s right or wrong.
You might use these posts as a basis to have a discussion with your family or caregiver. I believe many problems are misunderstandings, lack of knowledge, and not enough conversation.
These ‘Snippets’ might contribute to coping with stroke, or any involuntary life-change, and a better understanding of it.
Hopefully survivors and their families read it and talk about it.
The first post is about voice banking. One day you could need it. Everyone could experience it – not everyone can cope with it.
# 2. Remember Stephen Hawking?
Anyone can lose their voice through an accident, cancer, a brain injury, a stroke or Motor Neuron Disease. People who have Aphasia can tell you how frustrating it is not to be able to communicate.
Consider recording key words, and phrases you use to be used later in a computer program (record it on an external disk, or memory stick, on MP3). It might seem an arduous task but believe me it’s worth it.
I would suggest that you delete some and add some, every ten years because over the span of a lifetime your language changes. There are a number of companies offering voice banking today - worth checking out. You can use your voice, or if you’ve already lost it you can use a friend’s voice, like Stephen Hawking did.
# 3. "I'm always getting told what to do".
We know it mainly from the penal system – Institutionalization, sometimes called institutional system.
But whether it is prison, a hospital, or any other kind of institution. It can happen to anyone who has – willingly or not – rendered control of his/her life to someone else, or a system. The person has no more responsibility, and as a result, loses confidence. This is particularly the case when this happens over an extended period of time.
When the patient comes home this loss of confidence often is further exacerbated by well-meaning partners.
There is no timetable. It takes as long as it takes. Depending on their character the person will decide when they are ready to go ‘out there’ and ‘face the world’.
It is important not to do too much, but support them, and give them the space required to figure out themselves how they want to tackle this new situation.
# 4. Big Boys Don’t Cry.
One of the consequences of a brain injury is, what is called Emotional Lability, or Pseudobulbar Affect – uncontrollable crying, or laughing, sudden mood swings.
Embarrassing for everyone involved, it can be triggered by something sad, or funny. Sometimes also by the opposite emotion. For example, a person might laugh at a funeral because they think it is a real hoot.
It is most prevalent shortly after a stroke, gets less with time, or fades away totally.
Personally, I’ve lived with it for 30 years and am still laughing (admittedly, I have not been at funerals).
# 5. Aunt Dottie swears like a drunken Sailor.
Another embarrassing and surprising consequence of brain injury (and other neurological conditions) is swearing.
It can’t be stopped by the people doing it. Anyone with Tourette Syndrome, for example, can tell you about the strong reaction they receive from members of the public after making socially inappropriate comments.
It is particularly surprising to hear people who previously spoke
Queen’s English and fancied themselves at a Buckingham Palace tea party, suddenly communicate using four-letter-words.
# 6. If you’ve got it - flaunt it.
Coming home from hospital after a major trauma, like stroke, we have to get to know our body again.
First, we think we know our bodies, then we realize that things have changed, our body has changed, along with your financial status, your relationships, your social status, and the way society treats you and looks at you.
The best thing to do now is to take stock. Find out what still works, and how.
Yes, it is hurtful to admit your shortcomings, but there might be some things that still work – albeit differently.
Whatever your disability is, don’t hide it! Tell people about it!
Conversation fosters understanding.
# 7. Don’t smother her with your love!
Whenever a family member is sick, we look after them. It is our natural instinct to protect them, care for them, keeping problems far away from them.
It is the same if a family member comes home from hospital, but it’s not always the right thing to do.
True, he/she was released from hospital, but that doesn’t mean their recovery is completed, particularly if they’ve had a stroke. Yes, physically they are as good as it gets. Maybe even close to perfect. But mentally they still have a mountain to climb. For this they need some space, but they also need someone who makes that climb safe for them, without smothering them.
Snippet # 8. How long is a piece of string?
Assuming you are, like many recent stroke survivors, asking how long it’ll be until you get your old life back, the answer is probably never.
Even if there is total recovery physically, there is still the memory of a traumatic experience. This is why people who’ve experienced a life-changing event often display PTSD (Post Traumatic Stress Disorder). Understandably, someone is stressed if their entire life is turned upside down, but we should not waste our energy trying to get our old life back, but instead concentrate on building a new life.
Of course, we should exercise, do PT, and all that, but the purpose should be to better navigate the daily challenges, and step by step build a new life.
And what that looks like is entirely up to you. Because you are in control.
Snippet # 9. “What is the difference between ‘Rehabilitation’ and ‘Recovery’.
There seems to be confusion as to what rehabilitation and recovery mean, do, and how or when they are used. It’s somewhat of a ‘chicken-and-egg’ question. Do we need to be recovered enough to have rehabilitation, or did we have enough rehabilitation to concentrate on our recovery?
Even the World Health Organization does not get it entirely right. While they acknowledge that ‘Rehabilitation is an essential component of universal health coverage’, they do not acknowledge ‘recovery’ as a stand-alone component. For me, however, recovery is only completed when also the psychological and social needs are fulfilled. In other words, the total recovery is not determined by physical limitations, but by the confidence required to overcome psychological and social obstacles. And confidence can only be build by the patient.
A simple formula would be: Rehabilitation is done TO a person – Recovery is done BY a person.
Snippet # 10. What Stroke?
A woman, who’s had a stroke, put an ad in the paper advertising for household help but forgot to tell her husband about it. He opened the door when the first applicant arrived and sent her away, saying something like, this must be a mistake, as his wife was quite capable of doing the housework.
What happened here? The woman, quite rightly, felt that she needed help. Her husband was in denial. He thought “She’ll be right”.
Well,…she was not alright. Or, at least she knew, it would be a long time until she would be (and she knew this). People sometimes deny not only the stroke itself, but also the long-term consequences. Remember, a stroke affects the partner as well. So, if your partner has had a stroke talk about the changes. Together you can manage.
Please click here to go to the Stroke Mentor's page.
Over the following months I intend to write a collection of short posts.
They are about stroke, disability, rehabilitation, and related issues.
It’s not my intention to tell anyone what’s right or wrong.
You might use these posts as a basis to have a discussion with your family or caregiver. I believe many problems are misunderstandings, lack of knowledge, and not enough conversation.
These ‘Snippets’ might contribute to coping with stroke, or any involuntary life-change, and a better understanding of it.
Hopefully survivors and their families read it and talk about it.
The first post is about voice banking. One day you could need it. Everyone could experience it – not everyone can cope with it.
# 2. Remember Stephen Hawking?
Anyone can lose their voice through an accident, cancer, a brain injury, a stroke or Motor Neuron Disease. People who have Aphasia can tell you how frustrating it is not to be able to communicate.
Consider recording key words, and phrases you use to be used later in a computer program (record it on an external disk, or memory stick, on MP3). It might seem an arduous task but believe me it’s worth it.
I would suggest that you delete some and add some, every ten years because over the span of a lifetime your language changes. There are a number of companies offering voice banking today - worth checking out. You can use your voice, or if you’ve already lost it you can use a friend’s voice, like Stephen Hawking did.
# 3. "I'm always getting told what to do".
We know it mainly from the penal system – Institutionalization, sometimes called institutional system.
But whether it is prison, a hospital, or any other kind of institution. It can happen to anyone who has – willingly or not – rendered control of his/her life to someone else, or a system. The person has no more responsibility, and as a result, loses confidence. This is particularly the case when this happens over an extended period of time.
When the patient comes home this loss of confidence often is further exacerbated by well-meaning partners.
There is no timetable. It takes as long as it takes. Depending on their character the person will decide when they are ready to go ‘out there’ and ‘face the world’.
It is important not to do too much, but support them, and give them the space required to figure out themselves how they want to tackle this new situation.
# 4. Big Boys Don’t Cry.
One of the consequences of a brain injury is, what is called Emotional Lability, or Pseudobulbar Affect – uncontrollable crying, or laughing, sudden mood swings.
Embarrassing for everyone involved, it can be triggered by something sad, or funny. Sometimes also by the opposite emotion. For example, a person might laugh at a funeral because they think it is a real hoot.
It is most prevalent shortly after a stroke, gets less with time, or fades away totally.
Personally, I’ve lived with it for 30 years and am still laughing (admittedly, I have not been at funerals).
# 5. Aunt Dottie swears like a drunken Sailor.
Another embarrassing and surprising consequence of brain injury (and other neurological conditions) is swearing.
It can’t be stopped by the people doing it. Anyone with Tourette Syndrome, for example, can tell you about the strong reaction they receive from members of the public after making socially inappropriate comments.
It is particularly surprising to hear people who previously spoke
Queen’s English and fancied themselves at a Buckingham Palace tea party, suddenly communicate using four-letter-words.
# 6. If you’ve got it - flaunt it.
Coming home from hospital after a major trauma, like stroke, we have to get to know our body again.
First, we think we know our bodies, then we realize that things have changed, our body has changed, along with your financial status, your relationships, your social status, and the way society treats you and looks at you.
The best thing to do now is to take stock. Find out what still works, and how.
Yes, it is hurtful to admit your shortcomings, but there might be some things that still work – albeit differently.
Whatever your disability is, don’t hide it! Tell people about it!
Conversation fosters understanding.
# 7. Don’t smother her with your love!
Whenever a family member is sick, we look after them. It is our natural instinct to protect them, care for them, keeping problems far away from them.
It is the same if a family member comes home from hospital, but it’s not always the right thing to do.
True, he/she was released from hospital, but that doesn’t mean their recovery is completed, particularly if they’ve had a stroke. Yes, physically they are as good as it gets. Maybe even close to perfect. But mentally they still have a mountain to climb. For this they need some space, but they also need someone who makes that climb safe for them, without smothering them.
Snippet # 8. How long is a piece of string?
Assuming you are, like many recent stroke survivors, asking how long it’ll be until you get your old life back, the answer is probably never.
Even if there is total recovery physically, there is still the memory of a traumatic experience. This is why people who’ve experienced a life-changing event often display PTSD (Post Traumatic Stress Disorder). Understandably, someone is stressed if their entire life is turned upside down, but we should not waste our energy trying to get our old life back, but instead concentrate on building a new life.
Of course, we should exercise, do PT, and all that, but the purpose should be to better navigate the daily challenges, and step by step build a new life.
And what that looks like is entirely up to you. Because you are in control.
Snippet # 9. “What is the difference between ‘Rehabilitation’ and ‘Recovery’.
There seems to be confusion as to what rehabilitation and recovery mean, do, and how or when they are used. It’s somewhat of a ‘chicken-and-egg’ question. Do we need to be recovered enough to have rehabilitation, or did we have enough rehabilitation to concentrate on our recovery?
Even the World Health Organization does not get it entirely right. While they acknowledge that ‘Rehabilitation is an essential component of universal health coverage’, they do not acknowledge ‘recovery’ as a stand-alone component. For me, however, recovery is only completed when also the psychological and social needs are fulfilled. In other words, the total recovery is not determined by physical limitations, but by the confidence required to overcome psychological and social obstacles. And confidence can only be build by the patient.
A simple formula would be: Rehabilitation is done TO a person – Recovery is done BY a person.
Snippet # 10. What Stroke?
A woman, who’s had a stroke, put an ad in the paper advertising for household help but forgot to tell her husband about it. He opened the door when the first applicant arrived and sent her away, saying something like, this must be a mistake, as his wife was quite capable of doing the housework.
What happened here? The woman, quite rightly, felt that she needed help. Her husband was in denial. He thought “She’ll be right”.
Well,…she was not alright. Or, at least she knew, it would be a long time until she would be (and she knew this). People sometimes deny not only the stroke itself, but also the long-term consequences. Remember, a stroke affects the partner as well. So, if your partner has had a stroke talk about the changes. Together you can manage.
Please click here to go to the Stroke Mentor's page.