The adventures of Deaf-Blind Dad on his birthday!


Remember last Thursday I told you that I would be going to South Surrey for a Motion Neurologist appointment? Well, that was my birthday and getting there, and back, was a lot of fun! And I know you all want to read about the actual consult, so I will get to that shortly.

This day I took the Skytrain, first time since March 7th, nothing to report about this leg of my trip, in fact, I was engrossed in an ebook, so I didn’t notice anything. Upon arriving at Surrey Central Station, I was going to grab a taxi for the next part, I wanted to arrive at the right place! I got into a taxi, and the driver wanted me to pay up front as he calculated the cost to be $50. I showed my three books of taxi savers and said, I’ll pay you when we get there! Alrighty! He drove me to the building and, yes, it cost $50! So, I was running late and was communicating with my interpreter, she was there, waiting, and the doctor too! I rushed up to the third floor and found unit 310, hmm.. a Construction Firm? Maybe I was on wrong floor. Texted the interpreter, she will come get me… Okay… confused was I! I go to main floor check listings, the Doctor is NOT listed? Just then my interpreter walks in, and says “it in other building.” I did not other building! But it is there! Exact mirror opposite building! I was a bit mad at the taxi driver for dropping me off at the wrong building! He probably thought it was funny to see a Deaf-Blind man run into a building, thinking this the right building, yet he knew it was not! Why do I know this? Because when my appointment was finished, I asked the receptionist to call me a taxi. I went downstairs, and a cab was sitting out front, at the right place, not where I was dropped off!

I am not sure what to think… but, irregardless, moving on…

My interpreter and I speed walked back to the right building, found the Doctor out waiting for me in the lobby. He ushered me into his office to…

…find out more about my CAPOS.

This is what I learned from the Doctor…

The ATP1A3 mutation, everyone say that quickly, which causes CAPOS is also the same mutation that causes Dystonia (and my wife pointed out later it is also the same mutation that leads to Parkinson disorder). The Doctor mentioned that, often CAPOS and Dystonia overlap, patients who have CAPOS may or may not develop Dystonia.

Oh what is this interesting and weird word? What is Dystonia? It is muscles twisting involuntarily. Which could, would, explain the feelings I have of “sprained” ankles or neck aches.

The Doctor mentioned my mind is sending signals to my legs and neck, sending too many in fact, so that they are overactive! Leading to unnecessary pain.

He gave two options: one would be a relaxant medicine that would mellow me out, but not for long. The other would be Botox, which he, or someone else at a hospital/clinic closer to home, would inject at a specific muscle conjunction in order to boost the base, so the muscles wouldn’t overact or contract. If I recall correctly, Botox will be injected between two bones to move them apart.

So, obviously, I chose the Botox approach! Now, I need to get pictures or videos of my “sprains” and send them to him. How can he determine the location of a specific muscle group by looking at a series of pictures is beyond my comprehension!

BTW, both my soles of my feet are feeling numb…

We also talked about my lower back which has a lot of mild pain… he ordered an MRI.

So, after all that discussion, I zoomed home, and we had dinner and visited with my mum and mom in law out front where I was apparently Pied by my youngest son! Whip cream all over me! It was fun! I did warn him… “Your birthday is in July! You’ve been warned!”

It was an amazing birthday!

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The big five parts of capos

Cerebellar ataxia


Pes cavus

Optic atrophy

Sensorineural hearing loss


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