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.