Mind of my Stroked Brain

The topic of my epiglottis came up today again.... I want to state for the record, now that i can communicate, i didn't make it up, i did hear the docs and everyone else having an elaborate conversation about the epiglottis not moving and the paralysed right vocal chord. Also, i have seen it not moving properly in countless FES tests , endoscopies and also in the barium swallow tests. I only knew how it should work when i saw the video shown latee by my wife (yes, at some stage it was thought that seeing videos of a perfect swallow would make my brain do it subconsciously) Some gyan here..... The epiglottis is a muscular organ, like the tongue (i think it means tongue in latin) and works completely involuntarily. Like the heart, it just does its job from first breath we breathe to the last breath we take. Its sole function is like a flip flop. Sitting in the throat, it closes the oesophagus when we breathe and closes the wind pipe when we swallow anything. We cannot control it, eve

My head is aching more , back paining a lot, lot of pain in the neck, when sitting on wheelchair, bottom hurts more, the hamstrings pain a lot where it presses the wheelchair, my ankle joint hurts a lot, etc... Basically i am aching a lot more than ever.. Much of the time I'm sorting out between new pain or old pain and should i ask for a painkiller. For ex, my left shoulder pain is new, attributable to the physio focussing on exercising the shoulder. The shoulder blade pain is due to the standing for longer periods, so is the ankle. These are all new pain because of some new activity and i am cautious of these. All other aches and pains , nothing new has been done, same drill followed for ages now. I can only conclude that all this pain existed forever but i am able to feel it only now.. that's painful no doubt, but indicates some sensation in these places is slowly returning. That thought brings joy... Extending that logic, a lot more pain is in store as sensations slowly com

So, this is what i have experienced/ observed as the stages in rehabilitation.  Stage 0 is when you can neither move/ control the muscle. You can't even feel  it. Note: these are not just the big ones we know of, like biceps, triceps, hamstring,calf etc. Its every hundreds of small ones we never knew existed. Stage 1: is when they do passive movements. Just multiple movement of the same muscle. They supplement it with electric stimulation to trigger movement of the targeted muscle. It could take 6 - 8 months typically. Many of my left side muscles are still in this stage ,even at 2 years... Stage 2: is when the muscle gets some involuntary movements. It feels really weird and crazy to feel some part of  you twiching uncontrollably..i am guessing this is when the brain is doing trial and error connecting and having fun. I have noticed it very short time for a few muscles and months for others. ..its not the reaction when someone touches or moves the muscle, it has to move on its own

On a good day, i would be driving the car, humming to the music playing on the radio, having a conversation with the person next to me, fully aware of the conversation going on at the back as well. On many occasions i have caught myself subconsciously chanting a sloka which i used to chant very often.. 3-4 threads were easily processed in the head... Now, i cant handle even 2. Yes, I can hear ok, quite well in the left ear. However the brain just cannot process 2 conversations together. Suddenly both conversations become gibberish. If there is any cross talk, everything becomes unintelligible. Its quite an experience.. i can hear the multiple sounds, but i just cannot make out anything. This is not reserved to conversations i can understand alone. Even when the nurses are talking, i cant understand anything on the tv. Same when I'm watching tv in the living room. That's why i can't watch anything without subtitles. There will be some talk, and i can't make out without s

In the initial days of stroke, i used to get very emotional when anyone had food or drink in front of me. I used to feel so very bad. It was gut wenching to struggle with a spoon of water and have someone glug down bottles of water.. or hearing which dishes were better at some restaurant or hear arguments as to what to order from swiggy... Then i came home and everyone did a phenomenal job in being considerate not eating or bringing any food in front of me, except for the occassional tea. Coffee was still banned, fearing the aroma would set me off ( i still had the trac and couldnt smell anything). My poor daughter still struggles to hide the junk she eats.. Over a period i realised i was not that which triggered it when i saw foods. I thought over time i have adjusted and become less emotional. But that wasnt the case. I have realised that the desire to eat something, apart from feeling hungry, is complex. Its like going to a restaurant and being given a menu. When you order something

When i was out of surgery, my neurosurgeon told my wife that I'd have a lot of hiccups and balance issues because of where i had the stroke. The hiccups have been quite a lot. They were so much early on. They also made it to my hallucinations when in icu. When it starts, i know next few hrs is gone and i am unable to do anything else. My personal record is about 4 days non stop. It has gotten better and 3-4 hours every few days now. It has reduced in duration and frequency, except more intensity. Actually i dont know if its stronger or i just struggle more as there is on less hole in the airway to manage it.. but I'm hopeful it'll get better over time with the trend line... The balance is an issue I've had from day 1 as well. Its hard to describe.. i cant move an inch, but feel like I'm falling all the time. The closest i can think of is feeling of getting a kick as described from the movie inception ( https://youtu.be/V9uX_WamuYA ) . It is a milder version ,but the

When they finally removed the trac tube, everyone was thrilled. Not that i wasnt happy, after all, we have all struggled for so long for it. Entire Mumbai circus was for it.  While there are physiological benefits, it didnt do anything to me psychogically. The real breakthrough has been being able to weild the phone and Whatsapp. All the while there was so much crap going on in my brain , and i had no idea how to express it. It also gave me the strength to stay in the hospital... Now, i can eat all your heads even if i cant eat anything else.... I remember the days when it was look up for YES and look down for NO. That was hellish as most people didnt manage to frame closed ended questions, and most often the answer had to be a MAYBE... Then, thanks to my good friend, came the morse code chart. It was a big step up. But the challenge was most people could not understand it and would turn into a guessing game.. i would get even more frustrated, drive anyone trying to help crazy , and fi

Why i drool so much. I am asked to swallow my saliva and not spit out.. even if wanted to , i wouldn't be able to spit..   When the saliva is secreted, some of it comes to the front, depending on my position. What goes back to the throat ,i try to swallow most of it. But what collects in the front, well, you need 4 things to suck it back 1 strong lips 2 strong breadth, to create a sucking, vaccume force 3 functioning cheeks, to fold in slightly, to aid the sucking force 4 Most importantly, working tongue, to swipe and bring it back. None of the above works properly today, let alone coordinated way to make it happen. Yes, everyone does it, unconsciously.. Its also why i am able to swallow water and even semi solids doesnt happen. When im in bed, slightly tilted back, water like fluids just flow down to the back and i dont have to do much. However with semisolids, even if i can try swallowing, the stuff just doesnt go back. Hence the drool.. Believe me i know the mess i create, and i

Now that i have an account of what transpired, i will try to giva a glimpse of what was happening in my head. I dont know if they were dreams, hallucinations or imaginations. They were fantastical and detailed and unlike dreams which you typically forget or fades out, some of them i remember very clearly. I had no sense of time and dont remember the sequence it all played out. Each thread felt like it ran into days.. reminds me of the movie 'Inception' where your life in that world is 20 times normal time.. and if you asked me, i  could swear it was all real. It took a while to figure it was all just in my head... ___________ I was in the ambulance of what looked like some basement, seemed more like the basement parking of some mall. There was a lot of fight and argument and there was no room free to admit me. So, i stayed in the basement for days together.. ***** This might have been in the 2st hospital, im not sure ___________  I was tied to a chair and left dangling from a r