20210213 : my stroke and communication

The reference to the Tobii device a few days back, made me reflect on my communication saga and thought i'll share it with you all. Keen to know any other stroke survivor's story, and and ideas which we all could benefit from...

When I had the stroke and got back to clear and coherent understanding of what had hit us, it was about 5 weeks. It was a complétely unnerving feeling and what made it worse was the inability to communicate and express it in any way.

Very early on, folks realised i could move my eye balls vertically and blink. Very soon I had two words in my vocabulary. I was asked to look up for Yes and Down for no. It was a good start but the most frustrating as well.

-------> I had no way of asking or knowing what I wanted. I could only respond to what everyone wanted to know. Besides, i realised soon its not easy for everyone to frame questions that were closed ended. Most end up having to be Maybe, and other variants, so i chose to keep quiet.

Next was a very brilliant idea by a close friend of mine. He wrote the "Morse Codes" , thick and big, on a cardboard for the letters . It had to be "Short blink" for 'Dot' and "Long blink" for 'Dash'. I would see the board and do my series of blinks and others would decipher the word, letter by letter. It was tedious, but, i had the English Alphabet now...This was great....

--------> It was soon evident it was not easy for everyone and most folks would give up. Luckily, my wife was very good at this and i could convey few things. Given it was a tedious process, i had to prioritise and choose what to spend precious time on..

Everyone was spending a lot of time/ energy on mundane things. Like position change, diaper change, etc. Soon emerged another sheet with a list of standard things. So first they would show me both and ask which one i wanted and go from there. If it was std, we'd go down the list playing the yes/no game. Else play the morse code game.

After some weeks, i was able to move my left wrist and forearm a bit and instead of playing games, they could lift my hand to the sheet and i was able to point at the letters or what i wanted. It certainly made it easier..

This was all good games.. but how do you call someone to play when you cant move and cant make a sound. Especially because you had to call the nurse for suction/ anything. How do you catch the attention of whoever is attending to you so you can get them to call the nurse.

My wife had this brilliant idea to get me a 'front desk call bell' and keep it next to my left hand so i could just ring it to get attention. 

That bell has remained my faithful companion till date and stays next to me always..

Then we moved home and i got bit more ambitious..i had to convey pin numbers, user ids pwds etc . Imagine having to convey mixed case, alphanumeric with special characters with what i had...

Also i had no strength to lift my hand to move it vertically, but moveing it horizontally with my elbow resting on the bed easier.

So we printed a normal qwerty keyboard and pasted it on a cardboard and kept. Now i had the shift key, numerals special characters, the whole lot.. they would keep it near my hard, and i would point.

Inbetween we tried the Tobii device. Its really cool and very powerful. You use it just like a pc but the interface is all with your eyes.

I gave up using it mainly for two reasons

1. It was getting very strenuous because i had very nagging double vision

2. It had to be calibrated each time my position changed even a bit, and changed a lot it did, because of my cough.

So i reverted back to the qwerty keyboard. I used it for over a year till recently when i could use the phone and whatsapp.

Thats the story so far... Dont know what's next....

The video and experience by Kate Alatt and the feelings and frustration she explains is so relatable..

If anyone else is struggling and not able to communicate thats probably the first thing to sort out and find a way of communicating/ expressing. Thats over half the battle won in this journey..