As Emilee said last week, no one plans to have a stroke. When it does happen it's scary and complicated. In addition to the medical stuff, there's also the bureaucracy around finances and family roles that get turned upside down.I see a lot of questions and topics coming up on online support groups on Facebook, Reddit, and other places. I want to talk about some of that stuff this week to provide some reassurance and a base of knowledge from which folks can then ask more specific questions.
If anything I say, conflicts with the professional medical advice you receive, listen to your doctor -- not that guy on the internet.
As a caregiver with a stroke survivor you have to remember to breathe and take care of yourself. Emilee talked about that last week, and Dr. Lorig talked about it the week before.
After a stroke the brain is damaged. The only question is how damaged it is. Early treatment for a clot-based stroke can minimize the damage and speed up the recovery, as we saw with Anne Dailey in episode 14. In my case, I was outside the window for clot treatment so I still have more physical limitations.
Regardless, the brain is traumatized. It may have been starved of blood or drowned in blood. It's swollen. It may have have had a cable run into it from the thigh. The hospital environment is new and stressful. Parts have gone dark. Systems have gone off line. It's likely swollen in the skull.
It may take hours, days, or weeks to know the full extent.
Because there are so many variables in stroke from person to person and in each brain there are quadrillions of nerve connections that can be impacted, every stroke is different. Just like every person is different. Drawing comparisons between stroke survivors is likely problematic. There are some things we can keep in mind, though.
Sleep is more important than ever. When we sleep, the brain doesn't shut down. It cleans up and rebuilds. It's like closing the freeway at night for major construction. A stroke survivor will often need more sleep than before, especially in the immediate aftermath of a stroke.
Some folks may struggle with sensory processing. When they're not able to filter out most of the data we filter out every day, too much sound and too many people and too much light can be overwhelming and exhausting. Dr. Jill Bolte Taylor talks about this experience in her book, "My Stroke of Insight." It a great read for survivors, and it's probably even a better read for those around the survivor. You can find it here (affiliate link) or at your library.
Emotional Lability or Pseudo Bulbar Effect is also a thing many stroke survivors deal with, and it can be scary to those close to them. I talked about this with Gerrit in episode 7. It manifests as crying at the slightest emotional reaction or laughing at completely inappropriate times. Just because a stroke survivor is crying, though, doesn't mean they are sad. They might be, or they might not. It's just a physical reaction to the brain working hard. Sometimes in PT sessions, I would start crying as a result, even though I felt perfectly fine. Sometimes it lasts weeks. Sometimes longer. Medication can also help
After stroke, recovery starts immediately. It may not be fast or easy, but it does start. The key is to focus on the work. it takes thousands of repetitions to relearn a skill. There's a community to help.
Connect with a local support group, or find an online group. There are a bunch of Facebook groups and even a group on Reddit. There are several stroke support podcasts, too. Most groups welcome both survivors and caregivers.
More than 800,000 folks have a stroke each year in the US. You are unique, and your stroke is unique, but you're not alone.
Hack of the Week
Dycem (affiliate link) is a rubbery-plasticy material that is one of the Occupational Therapist's best friends. There's no adhesive, but it's super sticky. You can find it on Amazon (affiliate link), in OT catalogs, and probably medical supply stores. You can usually ask your friendly neighborhood OT for a piece and they can likely hook you up.
I use it most often for yogurt. The problem with eating yogurt one-handed is that the container slides around whenever I stick the spoon in. So I lay a piece of Dycem on the table, put the yogurt on top, and it doesn't slide around. Really, it works great for anything I don't want sliding around.
It's washable, too. I've been using the same 8x8 piece for more than 6 months now.
If you want to make it pretty, you can even use fancy scissors to cut patterns into it, and make sticky doilies or snowflakes.
Where do we go from here?
- What was your early experience like as a stroke survivor or caregiver? What do you wish you knew early on? Let us know in the comment below or click here.
- Consider picking up a roll of Dycem for yourself, or ask your OT.
- Share this episode with someone else who may find it helpful. Tell them to go to strokecast.com/newstroke.
- Don't get best...get better.
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