The Center for International Rehabilitation Research Information and Exchange has a good page that gives an overview of Locked-In Syndrome.
However, please keep in mind that every person is different. The severity of the stroke and the capacity of recovery can vary from person to person. In other words, what is typical might not apply to an individual.
Thursday, April 19, 2012
Conditions Related to Spinal Cord Injuries
Sometimes finding resource sites for people who are experiencing Locked-In Syndrome can be difficult. One of my goals for this site is to make information-gathering easier.
A good site to visit is the Christopher & Dana Reeve Foundation. While the site is dedicated to spinal cord injuries, those injuries lead to conditions which Locked-In patients also face. On the site, there is a page which outlines and discusses many secondary conditions faced by spinal cord injuried people.
A good site to visit is the Christopher & Dana Reeve Foundation. While the site is dedicated to spinal cord injuries, those injuries lead to conditions which Locked-In patients also face. On the site, there is a page which outlines and discusses many secondary conditions faced by spinal cord injuried people.
Tuesday, April 10, 2012
Ventilator Weaning
Sometime after the stroke, my Mom was intubated (meaning she had a breathing tube put down her throat) and put on a ventilator, though I'm not sure at what stage of the process. When I arrived late in the day that she was found and brought to the hospital, she was already intubated. While the ventilator ensures that enough air passes in and out of the lungs, it can lead to dependency and poorer long term results.
So it's important for a person who is using a ventilator to have it discontinued when he or she is ready. From what I've read, clinically determining readiness is not so easy. Even if someone is ready, the body can become a little lazy and the readjustment to doing all the breathing work again can be difficult. To a person who has been on a ventilator, being off the machine can feel a little like running a marathon. It's taxing.
A short overview of the process and decision-making can be found in a Ventilator Weaning article from Northeast Center of Special Care. Some knowledge beforehand can be helpful. In my case, my Mom's hospital gave us a lot of information on day 2 (not day 1) of the weaning process, so we weren't quite prepared for the process of watching her sleep most of the day.
Be informed. Ask questions. Make sure that the hospital tells you about the steps of the process. And most importantly, be encouraging. Once the weaning starts, your loved one might need a lot of positive support. Remember it's a marathon. Be ready to cheer along the way.
So it's important for a person who is using a ventilator to have it discontinued when he or she is ready. From what I've read, clinically determining readiness is not so easy. Even if someone is ready, the body can become a little lazy and the readjustment to doing all the breathing work again can be difficult. To a person who has been on a ventilator, being off the machine can feel a little like running a marathon. It's taxing.
A short overview of the process and decision-making can be found in a Ventilator Weaning article from Northeast Center of Special Care. Some knowledge beforehand can be helpful. In my case, my Mom's hospital gave us a lot of information on day 2 (not day 1) of the weaning process, so we weren't quite prepared for the process of watching her sleep most of the day.
Be informed. Ask questions. Make sure that the hospital tells you about the steps of the process. And most importantly, be encouraging. Once the weaning starts, your loved one might need a lot of positive support. Remember it's a marathon. Be ready to cheer along the way.
Wednesday, April 4, 2012
What to Do After the Stroke? For Family of the Person Locked-In
This is something that I would like to expand later, but here are some initial things to consider when facing a loved one diagnosed with Locked-In Syndrome following a stroke:
1. Pain. It's something easy to overlook, but something to consider. Care specialists might suggest pain patches; these slowly release their medication and may help for creating a more level and more manageable amount of pain. However, some people might not be tolerant of the patch, so a doctor might recommend to see your loved one's tolerance of the medication.
2. Body Stablization. Things that stabilize the loved one's vital signs are important.
3. Tracheotomy and PEG surgery: The intubation tube often feels unpleasant and it can increase risk of infection. When your loved one is medically ready, I would consider it. You and your loved one will likely feel better after the procedure. The PEG procedure (feed directly to the stomach) will allow better nutrition. The two procedures can be done at the same time. Talk to your doctors about them. If a doctor tries to tie the procedure to the long term considerations of your loved one, don't listen. Your doctor might be acting on personal biases and not in the best interests of your loved one (look at tip #6). Remember day by day.
4. The worst. The loved one who suffered the stroke might have a good understanding of how bad it is. It's important to balance that understanding with information which can be encouraging. Again it's helpful to have doctors who care. Don't forget you are being faced with the worst too.
5. Open the line of communication with the loved one who is locked-in. Blinking is one way to start. Opening eyes wide for yes appears to work well. There are other systems too. One thing is clear about locked-in syndrome—the level of communication can become better. There are low-tech and high-tech ways of doing this. One of the things I will try to focus on this site is the communication methods.
6. A change of doctor can sometimes make a huge difference. Doctors are not created equal. Some are better informed. Some are more willing to listen and learn. Some are more compassionate. It certainly helps to have a doctor who is on your and your loved one's side.
7. Keep the moments grounded. Hospitals can be very disorienting and confusing. Mention what day is it. Talk about what's happening in your world and the larger world.
8. Make sure your loved one is informed. The doctors should talk to your loved one about what's happening and ask for your loved one's permission to do things. (But don't forget tip #6!).
9. Don't forget about yourself. You can run yourself physically and emotionally down. If you do that, you won't be very helpful to your loved one.
If anyone else has advice, I would like to hear from people who have or are experiencing Locked-In Syndrome. Also family members, please speak up. While categorized as rare, this condition happens and more information needs to be readily available.
1. Pain. It's something easy to overlook, but something to consider. Care specialists might suggest pain patches; these slowly release their medication and may help for creating a more level and more manageable amount of pain. However, some people might not be tolerant of the patch, so a doctor might recommend to see your loved one's tolerance of the medication.
2. Body Stablization. Things that stabilize the loved one's vital signs are important.
3. Tracheotomy and PEG surgery: The intubation tube often feels unpleasant and it can increase risk of infection. When your loved one is medically ready, I would consider it. You and your loved one will likely feel better after the procedure. The PEG procedure (feed directly to the stomach) will allow better nutrition. The two procedures can be done at the same time. Talk to your doctors about them. If a doctor tries to tie the procedure to the long term considerations of your loved one, don't listen. Your doctor might be acting on personal biases and not in the best interests of your loved one (look at tip #6). Remember day by day.
4. The worst. The loved one who suffered the stroke might have a good understanding of how bad it is. It's important to balance that understanding with information which can be encouraging. Again it's helpful to have doctors who care. Don't forget you are being faced with the worst too.
5. Open the line of communication with the loved one who is locked-in. Blinking is one way to start. Opening eyes wide for yes appears to work well. There are other systems too. One thing is clear about locked-in syndrome—the level of communication can become better. There are low-tech and high-tech ways of doing this. One of the things I will try to focus on this site is the communication methods.
6. A change of doctor can sometimes make a huge difference. Doctors are not created equal. Some are better informed. Some are more willing to listen and learn. Some are more compassionate. It certainly helps to have a doctor who is on your and your loved one's side.
7. Keep the moments grounded. Hospitals can be very disorienting and confusing. Mention what day is it. Talk about what's happening in your world and the larger world.
8. Make sure your loved one is informed. The doctors should talk to your loved one about what's happening and ask for your loved one's permission to do things. (But don't forget tip #6!).
9. Don't forget about yourself. You can run yourself physically and emotionally down. If you do that, you won't be very helpful to your loved one.
If anyone else has advice, I would like to hear from people who have or are experiencing Locked-In Syndrome. Also family members, please speak up. While categorized as rare, this condition happens and more information needs to be readily available.
Monday, April 2, 2012
At the Beginning
I receive the call and it's bad. My Mom has suffered a stroke. In my case, I take the last flight out of Nashville to Chicago. It's a short flight, and under the circumstances of swirling thoughts and feelings, it's even shorter. The drive from the airport to the hospital is long, not longer than the flight, but it seems longer as the night blurs to streetlights and lane markers.
She is in coma. If she were my mother, I'd give it a day or two is the opening stanza spoken by the neurologist. I don't hear the words firsthand. They're relayed from a brother to me. It's hard not to believe the words when you see your mother with a tube stuck down her throat. It's hard not to believe when you look at the monitor and her heart rate is 120. I don't know if she'll make it through the night.
And it's a difficult night, a fast night. I give all the support I can give. It's all I can do now.
She is in coma. If she were my mother, I'd give it a day or two is the opening stanza spoken by the neurologist. I don't hear the words firsthand. They're relayed from a brother to me. It's hard not to believe the words when you see your mother with a tube stuck down her throat. It's hard not to believe when you look at the monitor and her heart rate is 120. I don't know if she'll make it through the night.
And it's a difficult night, a fast night. I give all the support I can give. It's all I can do now.
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