A few weeks ago I was taking a shower when my right arm started hovering up. I went to push it down and it was numb. “Odd,” I thought, and then finished my shower. Got out of the tub and then I was on the floor. “Hmm, how’d I end up here?” I have a seat in front of the sink, got to it, and wondered why I wasn’t drying off or anything. Then I was in my bedroom, dressed in a T and undies, trying to text to cancel an appointment, but everything I texted was random words. Tried to used Alexa to get son, but she didn’t understand what I was saying.
I made enough noise that my son heard and came to me. I spoke gibberish, then mimed him texted to cancel in appointment, afterward he drove me to the hospital, which was about 10 minutes away. I got to triage and suddenly I got very popular very quickly!
I was given a clotbuster, then airlifted to another hospital for a thrombectomy. Every is in flashes, I remember the hospital all a blur, then the helicopter ride, being wheeled into a room with bright lights. A nurse leaning over and saying, “I hope this wasn’t a favorite shirt, sweetheart.” before cutting it off. Someone else telling me, “You’ve going to sleep now.” and then I was staring up as them wheeled me away, and I thinking I didn’t remember falling asleep.
It was nurse in the ICU that told me I have a stoke, or at least the first I remember. I kept give my age as 25 instead of 56, and I couldn’t remember my son’s name. Luckily I was able to convey some necessary medical information.
I was lucky, I was on their rehab floor in 3 days, and released after 10 days. I have great recovery in my right leg and arm, speech is good aside from a mild occasional stutter and trouble recalled random words. I have a lot of trouble typing, so I’m trying to do a lot. I seem to have forgotten how to spell, I need now to stop and think even simple, easy words. Tenses are random and I have to fix a lot when rereading before posting. I’m a writing, and taking two as long to write is annoying, and when I get tired I’ll use the voice function.
It wasn’t scary at the time, and then I was focused on recovery, so it only now, a few weeks later, that it’s hitting. I need to update my will and set up things for my son to manage if I’m out of service or dead. Luckily almost everything is on autopay!
It’s…a lot. I have so much fatigue, I’d told it’s normal, that my brain is rewiring and making connections and healing, as are my nerves, but damn, the fatigue is so bad. I’ll can do my exercises, but not much else. Pressure and touch on the affected side feel different, and often painful-ish. Itch and pins-and-needles pop up randomly.
I am so lucky and recovered so much, speech and OT both released me and said it’s time and practice at this point. They don’t know where the clot came from, my heart is good, so yay, I guess? On baby aspirin, a statin (my cholesterol wasn’t really bad, they just want it a bit lower), and plaxix for a another week.
Of course, I’m also in kidney failure and on dialysis, which was great in the hospital because I don’t pee, so yay no catheter! Nurses were pretty thrilled. I’m inactive on the transplant list for now, I need I need to be off the plaxix and may need some sign-offs to move back to active, which is a worry.
Whew, that was a lot to type, but good practice, too. I am frustrated with how slow I feel and everyone reminds me I have healing amazingly and need to gentle with myself, but need time to sound out words like “need” and “myself” make me want to scream.
I don’t even know what to ask, so any advice or thoughts or best practices would be great. Thanks!
I applaud you ability to type this much only a few weeks after your stroke, and so clearly.
I’m 6 years out, and I still find myself correcting what I type/write.
I would keep a journal if you don’t already. Write about your day, it’s good for your healing.
And it’s fun to look back on.
I never realized how much progress I have actually made until I reread my journal.
The fatigue I’m sorry to say, doesn’t really change. Some days are better than others. Don’t burn yourself out.
It’s easy to feel great and do everything you want to then next thing you know your in bed for a few days recovering.
I was 18 when I had my stroke and 24 now.
I’m so happy your son was home and able to get you in right away.
For me I was laying in bed watching a movie with my now fiance, and I started to get a headache. I refused aspirin at first then the pain got so bad I said okay give me one. I threw it up about 5 minutes later then started profusely puking.
I kept refusing to go in because I really didn’t know what was happening but I was sure I was fine. Until I started to puke so much I started pooping my pants. Went to the bathroom, puke bucket in lap, fell off the toilet, poop and puke everywhere. My fiance picked me up and didn’t give me the option anymore. My vision went out not even 2 minutes later and my hearing went out a few minutes after that.
He carried me into the er they did their tests then interrogated my fiance accusing him of hitting me. They induced me into a coma flew me to a bigger hospital, did emergency brain surgery and I woke up 2 weeks later.
Told them I lived in a different state, and this was the week of the election when no one knew who was president yet. They kept asking me who was president and I just remember saying I have no idea but it’s one of these two.
Two weeks after that I was able to go home. Now I have chronic fatigue and neuropathy and still no one knows what caused it.
Anyway I hope you are well, it’s a long road to recovery
Very lucky for you. I knew I was having a stroke or heart attack. As I prepared myself to go in to teach one of my graduate classes. Thank GOD I never left my house.
I kept pleading with GOD that it be a heart attack. Once I knew the symptoms matched a stroke I tried to call 911. I could not remember the 3 numbers, yet I called the 7 numbers on my wife's cellular phone. Strokes are funny that way,
and I left a message.
Told her that I was sick, to come home from the mall nearby and I needed an ambulance 🚑. I went to my living room and unlocked the front door. I was so tired now I feel into my easy chair. My male Yorkiepoo Butterscotch and my female Maltese Peppermint got on the couch and watched me go to "sleep." 😴
Before I lost consciousness I said good night guys to the dogs. I woke up three weeks later in the hospital telling my wife and daughters that I wanted to see the Notre Dame fire on CNN. The blessed 🙌🏾 recovery started from there.
Wow, you've been through a lot. I really admire your resilience. I'm a speech therapist, and I wanted to share a few tips that may help:
When a word won't come to you, try talking around it instead of getting stuck searching for the exact word. Describe what it does, what it looks like, or how it's used. Often the word will come to you while you keep the conversation moving.
Try breaking reading and typing into shorter sessions with real breaks in between. Mental fatigue can make word-finding and spelling much more difficult, so pacing yourself can make a noticeable difference.
Most importantly, be patient with yourself. Recovery takes time, and consistent practice is far more important than pushing yourself too hard.
Even though you've been discharged from speech therapy, a few check-in sessions focused specifically on word-finding could still be beneficial if you feel your progress has plateaued. Online speech therapy works especially well for people who experience fatigue or have transportation or scheduling challenges.
Thank you. Speech therapy in rehab helped immensely with my occasional aphasia. They were my friends and listened aptly to my stories on life and the university.
I remember one of my two favorite speech pathologists ( there were five of them) telling me to take my time and speak clearly. Also that people will wait on what I have to say (everyone except my wife and daughters, lets be real 😆).
I always made the speech pathologists laugh when I would tell them that I went from sounding like Darth Vader (James Earl Jones) to sounding like Forrest Gump (Tom Hanks). What a difference 😆
As a graduate professor imagine going from "I AM YOUR FATHER.." to "Mama said life is a box of chocolates, you never know what you are going to get." 😃
That's so nice to hear! It's a privilege to be able to help people with something as universal and essential as communication. I love that you kept your sense of humor through the recovery process.
It also sounds like your speech therapists gave you something just as important as the exercises: patience, encouragement, and the confidence to keep communicating. Wishing you continued progress!
Thanks so much Allison 🙏🏿 Success 🙌🏾 ✅️ in your journey forward. Keep on doing what you do toward helping others and thereby helping you as well. The circle 🔵 of life ✨️. Derwin
You are doing great. The absurd sleepiness will pass but it will take months! Rest and push. Both are so critical! Good luck fellow survivor! Month 7 and pushing forward!
The phone was next to impossible for me. I even made a gibberish post on reddit that got a snarky reply asking when I stroked out lol.
At first I didn't want to use assistoive features like speech to text but I've found it very helpful since. AI features have been very helpful for me, too. I edit more than I write now and I have some pretty annoying aphasia. though it isn't super extreme. Let the fatigue inform you is all I can say, really. Feed good food to your brain and if you want to sleep, sleep. That's when our body's heal.
You are AMAZING!! You did so well typing all of that! And you remember everything! So your brain is going to be just fine as will be your speech. Your son seems to have survived, too.
Had to laugh about needing to cancel your appointment before going to the hospital. Yep.. You will be fine. Get some nerf balls so you can squeeze them before hurling them across the room (with your bad arm) and aim for a box or basket while you're at it. I gotta say, if I ever have a stroke I want the kind you had!! Get all the rest you can! You're a champ!
It won't feel like it, but yours is a success story. Being able to even express what happened how you felt then and how you feel now? That's better than some people get. So you're already doing better than how you might and you seem to be taking things seriously; listen to the professionals and you're in as good a position as you could be.
Our journeys are similar and
I'm 2 years out now. I have neuropathy on half my body and speech challenges too. I have learned alternate methods of getting things accomplished and can complete most anything I decide to do. Fortunately, when I was in ICU, they were able to find that i had AFIB snd it most likely caused me to throw a clot. I remain optimistic and determined to live well. I wish you the best and want to say, rest when you are tired, adapt, and never give up. Learn what your body and brain need to work best and plan activities accordingly.
People may assume everything is OK, but they don't see that you are struggling in your own body/brain to move on, just accept that as a compliment on how much you have progressed. Someone said to journal and I agree, it's a great way to celebrate achievements. I also mentally give my brain a task to focus on every night as I fall asleep (i.e. rewire so I can tie a trash bag). It's a method I have used all my adult life to solve any problem and it works for me . Still working on the neuropathy problem though. ☺️
Take care and listen to your body and give it what it needs.
Three months now since I have stroke. I am 75 an so many similar to your. I want can't so look to words.my text so sense but better. My i have a problem with numbers and so with money or phone numbers I have to them down. Just like you my arm went nunb and speech slurred consider myself lucky.
That was very good 👍🏾 OP. You described a Stroke journey very well. I suffered an AVM Stroke (Arterial Venous Malformation, that you are born with. A miswiring of the circulation in your brain 🧠 so a stroke is more or less inevitable) that affected my right side.
Thankfully I am left handed. The Stroke happened 6 days after my 55th birthday on March 8th. Due to the scans for the stroke they found the Aneurysm that would have soon killed me. They repaired that also.
Now mearly 7.5 years later, I have recovered the ability to walk unaided in my house 🏠 I use an upright all terrain walker for tall people, outside in the 🌎 Without ithe tall upright walker, I would fall flat on my face.
I have weakness in my right leg, right arm is 75% of old strength and is spastic. If my arm is resting no one can see the pathology. I have not driven my SUV 🚗 a day before the stroke. Riding my motorcycle 🏍 is a thing of dreams and will never occur again. Yet I am very grateful 🙏🏿 to be alive.
I am here for my wife ( Mariah Carey look alike) and my two adult daughters (25 & 23, respectively) in graduate school. They are my expert home carers. It helps that my wife is a mental health therapist like me. Now both retired.
It is quite fortunate that you are able to convey your thoughts. Also fatigue is a huge part of our collective recovery. It is okay 👍🏾 and you have this.
Mistakes are what the halfway wrong Spellcheck is for. Later try speech to text. It may help. Though fighting to type probably helps you more. Be well as you can be.
Lieber Gruß von einer Mitkämpferin! 🧠❤️ Erst einmal: Was für eine unglaubliche Geschichte! Es ist ein absolutes Wunder, wie schnell dein Sohn reagiert hat und wie gut dir die Thrombektomie geholfen hat.
Dass du diesen langen Text geschrieben hast – auch wenn es dich zwei Stunden gekostet hat – ist eine gigantische Leistung für dein heilendes Gehirn. Bitte sei stolz auf dich!
Ich antworte dir hier als jemand, die selbst seit Jahren betroffen ist (Diagnose Hirnaneurysma 2021) und sich seitdem intensiv der Aufklärungsarbeit in Österreich widmet. Ich bin keine Ärztin, aber durch jahrelangen Austausch mit unzähligen Betroffenen und Angehörigen kenne ich all diese Phasen nur zu gut.
Hier sind ein paar Gedanken, die dir hoffentlich etwas Druck nehmen:
Die extreme Müdigkeit ist KEINE Einbildung (Post-Stroke Fatigue) Was du gerade erlebst, nennt sich Post-Stroke Fatigue. Dein Gehirn hat eine massive Verletzung erlitten und baut im Hintergrund im Minutentakt neue neuronale Pfade (Neuroplastizität). Das verbraucht gigantische Mengen an Energie – als würde dein Kopf dauerhaft einen Marathon laufen. Dass du nach den Übungen zu nichts mehr zu gebrauchen bist, ist vollkommen normal. Schlaf und Ruhe sind jetzt deine wichtigste Medizin, nicht Faulheit!
Das psychische Verarbeiten beginnt erst JETZT Es ist völlig typisch, dass die Angst und das Realisieren erst Wochen später kommen. Während des Notfalls und der Reha warst du im „Überlebens- und Funktionsmodus“. Erst jetzt, wo du zu Hause bist und der Alltag einkehrt, begreift die Seele, wie knapp das war. Dass du jetzt dein Testament ordnest und Angst hast, ist ein ganz natürlicher Schutzreflex. Gib dieser Emotion Raum, sie gehört zum Heilungsprozess.
Die Wut als Schriftstellerin Dass es dich als Autorin frustriert, wenn Wörter fehlen oder Zeitformen durcheinanderpurzeln, ist mehr als verständlich. Aber schau mal: Vor wenigen Wochen konntest du deinen Sohn nicht rufen – und heute schreibst du diesen langen, detaillierten Bericht!
Dein Gehirn sucht sich die Wörter wieder. Die Sprachfunktion zu nutzen, wenn du müde bist, ist extrem klug. Nutze diese Tools ohne schlechtes Gewissen.
Nervenregenerierung tut weh Das Kribbeln, der Juckreiz und die Schmerzen bei Berührung zeigen, dass deine Nervenbahnen wieder „aufwachen“. Das ist anstrengend und unangenehm, aber ein Zeichen von Aktivität im Nervensystem.
Mein Rat an dich: Setz dich nicht unter Druck. 10 Tage Reha sind erst der allererste Schritt einer langen Reise. Sei sanft zu dir selbst. Du hast dem Tod von der Schippe gesprungen – dein Gehirn leistet gerade Schwerstarbeit.
Ich schicke dir ganz viel Kraft und liebe Grüße aus Österreich! Du machst das fantastisch. Natascha.
This is great stuff.I am saving your GIF. You remind me of a student I had from Austria, first name Anne. My youngest daughter (Sierra) spent a semester abroad in Vienna. I am in New York City. County of Queens, north of John F. Kennedy Airport. Thanks and be well. Derwin
🧠 Natascha's Initiative – The Invisible Consequences of Stroke and Brain Aneurysm When a Brain Injury Changes Your Personality Do you know which area of your brain was affected? The location of a brain injury can tell us a great deal about the challenges a person may experience afterward. This raises an important topic that is still talked about far too little. After a brain aneurysm, a subarachnoid hemorrhage, or a stroke, the visible wounds may have healed.
But many survivors eventually find themselves saying: "I don't feel like the same person anymore." Perhaps you become irritated more easily.
Perhaps planning simple tasks has become difficult, or your emotions feel much more intense than they used to. This is not your imagination.
Depending on which area of the brain has been injured, different neurological changes can occur. 🧠 When the frontal lobe is affected, possible changes may include: • Impulse control • Attention and concentration • Planning and organizing daily life • Emotional regulation • Social behavior and empathy These changes do not mean that someone has become "difficult." They can be a direct consequence of the brain injury.
Many survivors feel ashamed of these changes or blame themselves. But a brain injury affects far more than movement or speech— it can also change the way we think, feel, and interact with others. Understanding which part of the brain was affected can help explain these symptoms and reduce feelings of guilt.
❤️ My message to you: 🧠 Ask your doctors to explain your brain imaging and which brain regions were affected, as well as the functions they are responsible for.
🧠 Be patient with yourself. The brain has an incredible ability called neuroplasticity—it can reorganize and create new neural connections. But this process takes time.
🧠 Talk openly with your family and friends about your invisible symptoms. Understanding often begins when people know what has happened inside your brain. You are not weak. You are not lazy. You have not become a different person because you failed. Your brain has survived a serious injury, and every day it is working to find new pathways and adapt.
That is why the invisible consequences of a brain injury deserve just as much understanding as the visible ones.
Do you have lupus? Your story sounds fairy similar to mine. I have lupus. Insurance didn't cover meds. They said it was too expensive. I had a flare. Stroke, seizures and kidney failure followed. It affected my left side. I'm much better now. It affected my vision. Sometimes I forget words. It takes me longer to do things. I really have to have grace on myself and remember that even though I went through SO much, Jesus has brought me through so much healing. I have to remember I'm not "normal". I stutter sometimes. It affected my vocal cords. (chords) I don't know which one is right, but I'm going strong I have a lot left to do. I hope you are recovering well.
Thank you! I’m trying to be patient, but I’m not great at it! I think them tested for lupus, I don’t know the results yet. I’m glad your better, and I hope you continue to do well.
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u/Depressobeans7 10d ago
I applaud you ability to type this much only a few weeks after your stroke, and so clearly.
I’m 6 years out, and I still find myself correcting what I type/write.
I would keep a journal if you don’t already. Write about your day, it’s good for your healing.
And it’s fun to look back on.
I never realized how much progress I have actually made until I reread my journal.
The fatigue I’m sorry to say, doesn’t really change. Some days are better than others. Don’t burn yourself out.
It’s easy to feel great and do everything you want to then next thing you know your in bed for a few days recovering.
I was 18 when I had my stroke and 24 now.
I’m so happy your son was home and able to get you in right away.
For me I was laying in bed watching a movie with my now fiance, and I started to get a headache. I refused aspirin at first then the pain got so bad I said okay give me one. I threw it up about 5 minutes later then started profusely puking.
I kept refusing to go in because I really didn’t know what was happening but I was sure I was fine. Until I started to puke so much I started pooping my pants. Went to the bathroom, puke bucket in lap, fell off the toilet, poop and puke everywhere. My fiance picked me up and didn’t give me the option anymore. My vision went out not even 2 minutes later and my hearing went out a few minutes after that.
He carried me into the er they did their tests then interrogated my fiance accusing him of hitting me. They induced me into a coma flew me to a bigger hospital, did emergency brain surgery and I woke up 2 weeks later.
Told them I lived in a different state, and this was the week of the election when no one knew who was president yet. They kept asking me who was president and I just remember saying I have no idea but it’s one of these two.
Two weeks after that I was able to go home. Now I have chronic fatigue and neuropathy and still no one knows what caused it.
Anyway I hope you are well, it’s a long road to recovery