Rehab or what?

What do you call the recovery process after surviving a major illness?

So, after leaving the ICU and getting back home, I got a recommendation for a physical therapist out in Palm Springs, and that’s where the "struggle" started.

The PT isn't coming by until tomorrow, and honestly, my recovery is feeling pretty rough—which is frustrating because nobody actually told me what to expect after a "procedure" like this.

I'm sticking to my prescribed meds, and that's about it. The only real win so far is that for three days straight, my head hasn't been absolutely pounding—just some minor throbbing in the morning to remind me it was there... plus my blood pressure finally leveled out.

But, oh boy... my left arm and leg are just getting worse. They keep swelling up. I guess that's why they ordered the physical therapy, right?

I'll find out tomorrow once we start and if I can even manage to hold a conversation to get some actual answers.

This sudden lack of mobility is hitting me hard. I used to be super active, and now I'm stuck relying on people for basic, everyday stuff. Like, I can't even turn on the gas to boil water because I can't use my left hand to hold the knob while my right one tries to light it...
Thank God I have an electric stove, so I managed to heat things up that way... still, it’s exhausting. Even typing this is a chore—every time I need a capital letter, I have to struggle to position my left index finger just to hit Shift so I don't waste what little strength I have left in those fingers.

I'm worried that even this tiny bit of typing counts as exercise to keep my left arm from seizing up completely. You really have no clue how much you rely on your left hand until it stops working.

I know things are tough right now, but please try to practice as much as you can and really focus on using your left hand. I’ve been away for a bit, and even now, I don't get nearly as much time on the forums as I usually do (though hopefully that won't last too long)...

From what I've read about what you're going through, getting started with physical therapy should be your top priority. You really want to jump in early to get the best possible results.

If you have the chance to head out to a wellness retreat, I’d highly recommend checking out somewhere like Palm Springs. Their neurological rehab department is fantastic—they have some incredible therapists there who specialize in the Bobath method, which works wonders for hemiparesis (I'm just guessing based on what you've shared, since I'm not entirely sure where you stand currently)

Casey Palmer5 said:[Hey, if you get the chance to head to a spa, I’d highly recommend Palm Springs. Their neuro-trauma department is incredible—they have amazing therapists who specialize in the Bobath concept and get great results with hemiparesis (not sure where you're at right now, just guessing).]

Thanks so much for reaching out! I’ve been trying to keep up with my exercises and massages constantly, but now I'm dealing with a new issue—my hand and fingers are swelling up...

I’ve actually been seeing Stubbs, but honestly, I have zero clue which kind of spa treatments are even safe for me to use... plus, I still need to get an appointment lined up with Stubbs.

I'm waiting for things to "settle down" a bit before I can go see my primary care doctor for a real, deep-dive conversation.
Right now, I'm just waiting on my husband to get home. He’s trying to handle the talking for me, but let's be real—it’s never quite the same as speaking for yourself. It feels like everyone is dodging a direct, honest talk with me. Like I'm some kid or totally losing my mind... 😁

My biggest struggle has always been how easily people try to "dismiss" me without much explanation, while I’m over here fighting like a lioness for everyone else.

Lymphatic drainage should really help with the swelling in your hand and fingers. It’s basically a type of massage where you use light strokes to guide the lymph from the extremities back toward your torso—basically moving it toward the heart. You really ought to have a trained professional do this, though. In the meantime, try not to be too aggressive with the massage; just keep it gentle, moving from your fingers up toward your forearm and upper arm. Whatever you do, don't go in the opposite direction! Also, when the swelling gets bad, try to keep your hand elevated. Prop it up against a wall or use some pillows so your hand stays at the highest point possible. You can do this while watching TV or just relaxing, and it should help bring that swelling down. I can't give you much more specific advice than that, because I really shouldn't be guessing off the top of my head...

Try working on your hand by pushing for normal movement. Use your healthy hand to assist the affected side with things like gripping and grasping. If you notice your hand swelling up specifically after exercising, it's a sign you probably overdid it and need to slow down. Definitely use your strong hand to mimic everyday motions—for example, grab a comb with the affected hand, and if your grip isn't quite there yet, use your healthy hand to steady it while you try to comb your hair. You can even come up with your own little "tasks" like that. The main thing is getting as much tactile and spatial feedback to that hand as possible; it really helps the recovery process...

I know how incredibly tough this is, but at the end of the day, nobody can help you more than you can help yourself (though, honestly, finding a great physical therapist as soon as possible would be worth its weight in gold)

Good luck, and please keep asking questions. I'll answer anything I can, since I am a physical therapist myself

Casey Palmer5 said:Good luck! Just ask away—I'll answer everything I can since I'm a physical therapist.

Thanks. Wish you'd said that sooner! 😉

My PT just left about half an hour ago after we knocked out our first 40-minute session together. She’s such a sweet, energetic kid... she's coming back tomorrow. I've got 40-minute sessions scheduled five times a week!

I even showed her what I've been working on lately... 😁

Anyway, we're both feeling pretty good about it so far. Honestly? A huge weight has been lifted off my shoulders. The fear is finally starting to fade.

Here I am again... so I just found out today that "my" physical therapist is seeing a patient at a local preschool!
Basically, it's a kid who had a stroke, so they're dealing with that same left-side paralysis that I am.😢

slyviper47, check your PMs!

👋

Thanks... I saw it and shot back a reply...👋

Casey Palmer5 said:If you get a chance to head out to a wellness resort, I’d highly recommend checking out Palm Springs. Their neuro-trauma department is top-tier. They have some killer physiotherapists there who specialize in the Bobath concept—they get amazing results with hemiparesis (not sure exactly what you're dealing with, just guessing!).

Man, I'm really curious about this Bobath thing. Is there anything like that in Washington, D.C.? Where should I look or who can I talk to? Hey, Casey Palmer5... feel free to shoot me a DM too! Thanks!

Casey Palmer5 has already given you plenty of solid answers and suggestions.
The only thing I can really suggest is to constantly have something in that hand—something you can try to squeeze or manipulate.
To start, try using your right hand to guide the movements of your left—basically, work the left hand through exercises while slowly trying to follow along, resist, or push against those motions...
Palm Springs would be a decent spot for some recovery.

Thanks, steelsailor17, that’s exactly what I’m aiming for!

My doctor actually brought up the Bobath method too, but he didn't have an address for any clinics in Washington, D.C.... so that's why I'm asking. Google hasn't been much help either—it's like there's nothing listed around here, or maybe I'm just not searching the right way?

It’s actually a private clinic. They have physical therapists there who specialize in the Bobath concept. You won't find that kind of specialized care in the hospitals or local clinics here in Washington, D.C., because the training is incredibly expensive, and the American healthcare system just doesn't cover those certifications for therapists working in public facilities. Usually, people end up paying for the training themselves and then practicing privately, but honestly, not many of them go through all that effort...

Alternatively, you could look into the brain injury unit over in Palm Springs—if you get a referral from Z. Maček, he does VFT. He's hands down the best in the country for that kind of thing.

thanks....🙂

So, my therapist uses parts of this method too. But when I read up on it, it looks like she sticks strictly to the book. It’s a different story when you realize the official protocol calls for 40 minutes per session—I just don't have the willpower for that! 🙄
Just wanted to mention that I actually found her through a private agency that’s contracted with the SSA.

You just have to have the drive 🙂

It’s honestly great if they’re incorporating at least some Bobath techniques, regardless of whether they have formal certification in it or not. We touched on parts of it during our university programs, but the real question is how certain therapists actually handle things once they're out in the field—whether they actually apply what they learned in school or if they just stick to basic range-of-motion exercises...

How do I actually find the drive to get moving? That’s my biggest struggle right now.

So, I finally got back from my follow-up at the hospital on Friday—had to do those repeat angiographies. They’re telling me everything looks fine, "supposedly," but honestly? I don't feel any better at all...

Can you believe they didn't even give me a new medical history or hand back my old one? Like, seriously?

Bottom line is, I'm totally dependent on others to get by right now... but hey, I'm still holding out hope that things will actually start looking up soon!

The only thing is, after this angiography, I didn't end up with that huge bruise in my groin. I actually complained about it because there was still an old mark on my right side from before.

This time they went through the left side using a smaller needle... so you can barely even see it now... just a tiny little dot where they poked me.😉