Invisible Disability after my stroke. Alexia, Agraphia, Acalculia, Anomia, Aphasia.

[@TorgerVedeler]

Stroke survivor here. Every word of this is true. I was able to relearn to read, thank goodness, but I still feel the disability. A couple of days ago I had a TIA and lost it all again. Thank God it came back, but the fear is still there. Thank you for doing this video.

[@lovelifevlogs4543]

You are truly a determined person. Hats off of your courage

[@77Marcel]

Your videos help me to understand how my brain has been "rewired" since my strokes. Thanks for your courage and help to accept what has happened to me.

[@sonjavass8014]

Thank you so much, alcalculia is so frustrating!

[@maryfagan9592]

Brilliant video I had to tell rehab my husband couldn’t read ,though he was pretending to because he wanted to finally they assessed his deficits and realised that he couldn’t !

[@Christine-bq1uy]

This is a wonderful video Rebecca. It is informative and accessible and destined to help many people, particularly those who have experienced a stroke. This vulnerability and bravery are gifts to so many others. Thank you for sharing your voice and keep doing so. It is needed.

[@Freedom-x4u]

Having a stroke and people around trying to bump up your emotions by saying, you look great to me, makes me feel intimidated on, if they could only feel the pain and struggles.

[@jaylynw]

I absolutely love this video, and it is so essential for all of us to hear! Thank you so much for sharing your struggles and raising awareness for your disability that already takes such emotional toll. You are definitely speaking up for others who may not be able to speak for themselves. And, I agree that there should be so many more visual supports in hospitals and rehabilitation centers. Wonderful video.

[@mydisorderedbrain8607]

Thank you for taking the time to leave this message! I appreciate it!

[@crispendergast111]

Great video! I literally had to write an email to my husband’s OT therapist this morning because his aphasia is severe and he was very frustrated yesterday and all I could get was they had him filling out some kind of form. He can sound a lot of words out now but doesn’t comprehend what he’s reading and still around a first grade level.

[@mydisorderedbrain8607]

Uggg!! Throughout my rehabilitation, I began to ask, have you asked my speech language pathologist if this is an appropriate task? What does my speech on his pathologist think about this? Have you asked your coworkers about this? My SLPs were amazing throughout my recovery and they were the experts in my care. Find your hospital ally! Perhaps a card that you can write for him? I have aphasia, idiot. Happy to talk! I have so many stories of my own but I would love to start collecting stories from others! One therapist would always challenge me to remember my room number. I couldn't read the numbers. I couldn't remember the numbers. One day I snapped. I don't remember my children's names. The names that I chose for them. The names that I wanted above all other names. And I don't always remember their names. And I'm terrified. F*** the room number.

[@crispendergast111]

Yes! The children’s names! The one that’s hardest for my husband is our eldest who is named after him. Yep I’m pretty sure the email I wrote this morning is going to start a fire. But he has all kinds of tools with him because he also sees speech there and a Id bracelet because he can’t always tell you his name etc. I am a huge advocate for him but these times we live in make all of this harder since they don’t let me stay with him.

[@mydisorderedbrain8607]

@@crispendergast111 Thank you for being his voice when he doesn't have one. I always thought it was amazing that I was living in an intensive rehabilitation unit but continued to face obstacles like these as a patient who's disorders were poorly understood

[@mydisorderedbrain8607]

@@crispendergast111 I hope your fire burns the place down. To burn down the health system that we find ourselves in. To burn down the siloed network of experts in our intensive care units. So that the expert's responsible for our care will truly listen to patients

[@valeriebrennan949]

You did a tremendous job on that Rebecca. I know that takes a lot of skill. Congratulations.

[@rebeccam1713]

Hi from another Rebecca with 8 invisible AVM related long term disabilities (epilepsy, partial hand paralysis, visual field cut, ADD, short term memory loss, severe math/ science/technical disabilities) Kudos for the great video! 👋

[@mydisorderedbrain8607]

Hello Rebecca! Thank you for reaching out to say hi! When was your AVM rupture?

[@rebeccam1713]

Hello - you're welcome! My AVM rupture was over Memorial Day weekend in 1993, at the end of 6th grade at a magnet language school - I had just won a trophy for getting the second best grades in the class (my mom said they brought it to me while I was starting to relearn math again from 1 plus 1).

[@zoria]

Really frustrating about the discharge plan. Can't believe that they didn't provide options!

[@SarahEYounglove-MissUSA]

Thank you so much!

[@normanmacfarlane6724]

I have had 2 strokes. Although I look physically well I shut down when there's too much stimulation. I simply cannot think about what is going on.

[@sdkonlinestrokeawareness5990]

I am a stroke survivor since 2013

[@relationshipk]

I have a client who has had L] MCA stroke, difficulty with reading. If he/she is with Alexia, I am wondering how to improve this symptoms.

[@mydisorderedbrain8607]

Awesome question! I started with the alphabet. I chose a picture for each letter. Think of a children's alphabet A=Apple B=Bear C=Cat. But, I chose words that were best for me, sometimes my kids names. N=Norah O=Oscar. I can send you a picture. You can message me on Instagram or Facebook at ComfortHeadbands. Next, I practiced a list of the most common 100 words in the English language everyday * one week. Example: This Time But You What And It Have Is I used a stopwatch to measure improvement. The next week, I would practice the next most common 100 words. I did this for 10 weeks = 1000 words in the English language. Every week, I practiced those words in a sentence. There were about 20 sentences in the beginning. Example: What time is it? Each week, the sentences became longer and more different. Finally, I practiced a paragraphs. My goal was to get to 100 words per minute. But I don't think I ever got there! Send me a message if you have more questions !

[@yooya3407]

can you tell how long have you been in stroke? I'm being in a stroke for march 3, 2019. right now, i feel like my stroke has gone 90 percent. i'm graduated in my master computer engineer after my stroke 3 years ago.

[@mydisorderedbrain8607]

June 12, 2020. It's been almost a year since my stroke. Congrats on completing your masters degree! And, I'm glad to hear you've recovered 90 percent. My day to day life is getting easier. But, my reading, writing and math is poor. I'm reading at a grade 1 level. I read at a rate of 35 words/ minute. The average adult reads at 250-350 words / minute. Thank goodness for technology!! Did your stroke affect the same hard of your brain as mine?

[@yooya3407]

you're get better if your time going 2 years (trust me). At my first year, i do get a job as hardware engineer, second job is electrical engineer, and my third job is firmware engineer. Never give up !

[@donntrent2]

Hi, did your brain MRI show areas of damage?

[@mydisorderedbrain8607]

Yes! You can watch my most recent video where we look at my brain scan!

[@tinasteer2507]

It usually shows up as a bright white area on the brain.

[@MrDavidsuits]

I wonder If that is the kind of stroke I had

[@patient4138]

My wife just got that rare alexia stroke , and its alarming how reading and writing compression got lost after a stroke... can you please help us have hope on how to gain all those disability came back how are you now We got it two weeks ago

[@lazysleeper7174]

Could you write now???

[@CF-tk4jk]

hi, i watched your videos, but I ask of you to change your name from mydisorderedbrain. your words have power :)

[@mydisorderedbrain8607]

Awww, thank you! I'm glad you are finding connection here. I'll think about what you said! My brain now has trouble ordering ideas (as well as numbers and words). But, I'm liking parts of myself in that. I don't feel as constrained by an intended 'outcome' or 'message' of these videos. I find the disorder can be freeing.

[@Freedom-x4u]

Leftsided Thalamic stroke 2021, and after two types of P. T., two pain management facilities, 5 different pain meds, they have done nothing but make me irritable and frustrated. So I started smoking Idica CBD-THCA, and it mentally helps(anxiety), It also hits the CB-1 receptors in the brain cells which somehow directs the physical pain elsewhere. Steps, slopes and driving at night are my fears. Of course everyone reacts differently from smoking it or taking the gummies, but flower cost less than worms. It somehow ups brain activity. Makes you more into music, able to focus on chores and a motivational effect. Does it make finding words easier, not really. Helps with sleep. Does not stop the headaches you get from concentrating. It also helps with sleep and does give an euphoric effect(high feeling). I'm Still struggling today with Spasticity,, Rigity and motor function. Magnesium Glycolate helps with spasms. You are correct in trying to explain to someone what struggles stroke survivors cope with everyday. Explaining to anyone is like talking to the wall. Even the people that say, "you look great". If they could only feel our pain, would they then might understand our daily emotions.