u/Important-Gift-2867

I’m a 48F. I had a stroke in April 2026, and it completely flipped my life upside down.

I spent about 2 months in the hospital. At my worst, I couldn’t walk or talk. I had to write everything down to communicate. I also dealt with constant blood draws and IV attempts because my veins were difficult, including being woken up in the middle of the night for labs.

On top of the stroke, I got shingles across my back and chest, which made recovery even harder once sensation started coming back. Between that and everything else, most of my time in the hospital was just trying to get through the day.

Since being discharged, I have made progress. I can walk again with a walker, and I can speak without needing to write everything down. That part still feels unreal sometimes, but I’m grateful for it.

My biggest issue right now is swallowing. I can’t safely eat or drink, so I have a PEG feeding tube.

I’ve been working with home health PT/OT/SLP, and I’ve been doing swallowing exercises consistently. I’m trying really hard to stay on top of it.

A few weeks ago I had a modified barium swallow study at the hospital to check progress. I was actually hopeful going into it because I’ve been working at it.

The test itself felt very rushed. I was given a few different food textures to try under fluoroscopy. After I couldn’t swallow the second round (no aspiration), the test was basically stopped immediately.

Afterward, when I asked what they thought, the response I got was very blunt and discouraging—something along the lines of there being “no meaningful recovery” expected with my type of stroke, and I was sent out pretty quickly.

That experience really messed with me mentally, especially because I’ve still been actively working with therapists at home who are seeing progress and encouraging me to keep going.

They’ve reassured me that recovery is still possible and that they wouldn’t keep working with me if they didn’t think there was room for improvement.

I’m trying not to let one really bad experience derail everything, but swallowing is still my biggest hurdle and it’s honestly scary.

I’d really like to hear from anyone who’s had a brainstem stroke or serious dysphagia after a stroke:

• Did your swallowing improve over time?
• How long did it take?
• Anything that actually helped?

When this started, I wasn’t even aware it was happening. I had just been discharged from the hospital for something unrelated, and the next day I started noticing I couldn’t speak clearly, swallow properly, or walk without holding onto things.

I’m staying as positive as I can and I have a solid support system, but I won’t pretend I’m not scared about what recovery looks like from here.

Thanks for reading. Any experiences or advice are appreciated.

I’m a 48F. I had a stroke in April 2026, and it completely flipped my life upside down.

I spent about 2 months in the hospital. At my worst, I couldn’t walk or talk. I had to write everything down to communicate. I also dealt with constant blood draws and IV attempts because my veins were difficult, including being woken up in the middle of the night for labs.

On top of the stroke, I got shingles across my back and chest, which made recovery even harder once sensation started coming back. Between that and everything else, most of my time in the hospital was just trying to get through the day.

Since being discharged, I have made progress. I can walk again with a walker, and I can speak without needing to write everything down. That part still feels unreal sometimes, but I’m grateful for it.

My biggest issue right now is swallowing. I can’t safely eat or drink, so I have a PEG feeding tube.

I’ve been working with home health PT/OT/SLP, and I’ve been doing swallowing exercises consistently. I’m trying really hard to stay on top of it.

A few weeks ago I had a modified barium swallow study at the hospital to check progress. I was actually hopeful going into it because I’ve been working at it.

The test itself felt very rushed. I was given a few different food textures to try under fluoroscopy. After I couldn’t swallow the second round (no aspiration), the test was basically stopped immediately.

Afterward, when I asked what they thought, the response I got was very blunt and discouraging—something along the lines of there being “no meaningful recovery” expected with my type of stroke, and I was sent out pretty quickly.

That experience really messed with me mentally, especially because I’ve still been actively working with therapists at home who are seeing progress and encouraging me to keep going.

They’ve reassured me that recovery is still possible and that they wouldn’t keep working with me if they didn’t think there was room for improvement.

I’m trying not to let one really bad experience derail everything, but swallowing is still my biggest hurdle and it’s honestly scary.

I’d really like to hear from anyone who’s had a brainstem stroke or serious dysphagia after a stroke:

• Did your swallowing improve over time?
• How long did it take?
• Anything that actually helped?

When this started, I wasn’t even aware it was happening. I had just been discharged from the hospital for something unrelated, and the next day I started noticing I couldn’t speak clearly, swallow properly, or walk without holding onto things.

I’m staying as positive as I can and I have a solid support system, but I won’t pretend I’m not scared about what recovery looks like from here.

Thanks for reading. Any experiences or advice are appreciated.