2012 Cuenca Perspectives Collage

2012 Cuenca Perspectives Collage
VIVA CUENCA

VIVA CUENCA!

My mission in publishing this blog is first to provide a living history of my settlement and life in Cuenca, and to provide myself and the reader with a journal account delineating my reasons for why I have chosen to settle in Cuenca. Second, the posts are my way of staying in contact with family and friends back in the states, and to provide them with an understanding of a country and culture that most North Americans have little knowledge and awareness. Third, the blog is open to one and all who wish to compare and contrast the experiences of expat bloggers living in Cuenca, so that you can determine whether or not from your perspective Cuenca is an appropriate move for you. Fourth, my blog provides another example of how expats view and interpret life in Cuenca. Ecuadorians and Cuencanos who may read this blog are especially invited to post comments that may enhance all expats understanding and appreciation of Cuneca and its people, or to correct any misinterpretations in my assumptions and perceptions of Cuencano culture. Finally, I hope I can convey the feeling of love and appreciation that grows within me each passing day for this heavenly city nestled in the Andes and its very special people.

Thursday, June 15, 2023

APRAXIA: SIEG BRAM OF CUENCA'S STORY OF A VERY RARE DISEASE

 

Today's post is a personal story of a very good friend of mine who lives here in Cuenca, who shares with you his attempted journey to wellness as a result of contacting a very rare infirmity that apparently most doctors, world-wide, have little if any knowledge, let alone experience in dealing with it.  The infirmity is called APRAXIA. 


If you should read this letter, and know of any information on the subject, or if you are a medical person who has knowledge and experience of dealing with APRAXIA, or if you suffer from APRAXIA; Sieg would appreciate having an opportunity to commiserate with you about how you have been dealing with your experience.  You can email to Sieg Braum (onehaistct@yhoo.ca).  If for any reason, you should have difficulty contacting Sieg by his email address.  You can also use my email, (jmola777@gmail.com), and I will forward your comments and/or information.


SIEG'S STORY

The continuing saga of my mission to recover sight. Warning: it's a long email

It has been over a year, since I last created an update on my journey with, 
what now turns out to be Apraxia of the eyelids (ideomotor-type)..You may 
recall  that my earlier diagnosis was "Blepharospasm" and all treatments were 
predicated on that diagnosis. However, that changed, when four sessions of 
Botox, weeks and months apart, administered to the eyelids proved useless.

A brief description of what I'm experiencing. My eyelids refuse to open and                        remain open, for the most part. While I can force them open manually or am 
able to peer out of one or the other mostly-closed lid, the muscles generally 
tend to force shut my lids. Trying to find stuff in a cupboard or in the fridge is 
difficult and I'm often grunting in the effort to see. With my face distorted in the 
effort to see, encountering a tree, curb, sudden drop-off or Latino in the street, 
gets another weird sound. I wear wrap-around shades around people. It's for 
my own comfort and to not freak-out innocent children. It allows me to relax 
more, knowing I can leave 'em closed or catch a glimpse or two of what is 
around me. Plus I have the added advantage of looking really tough and 
Terminator-like.

I must back-track a bit, since Bleparospasm was only briefly mentioned 
in the previous email, It's not a totally unknown affliction; in fact, Botox 
seems to have been developed for that condition and then found it's place 
in the vanity/beauty world. Lots of articles to be found on that, but contrast 
that with Apraxia, for which you'll find scant information and even less 
treatment literature. One can be of two minds on this reality, one feeling 
angry that this has been foisted on me. Alternatively, how terribly special 
must I be, to be the poster-child for this incredibly rare condition! Interestingly, 
Apraxia sharessome traits with Bell's Palsy. (More on that later)

Part of my research, included looking into how Covid might have affected my 
neurology, since I'd tested "positive" twice. While there is some research   
on that, there is far more research on (Covid) "vaccine" injuries. Huh!  my 
loving wife Karen's sister-in-law, Eileen, had looked into the subject, and 
suggested I look into injuries associated with AstraZeneca (the two shots 
each that Karen and I had taken). While there are plenty of injuries listed, 
including neurological ones, Apraxia is not listed among them. The initial
symptoms appeared shortly after the first injection and obviously worsened 
after the second shot. Reaching-out to the (Iranian) author of the 135 pg 
study that details 1/4 million Astra-Zeneca injuries proved futile.

Now, there is plenty of anecdotal "evidence" out there, of vaccine injuries 
(Justin Bieber and Jamie Fox, spring to mind), but who is going to prove fault 
of Big Pharma in this? Too many conspiracy theories for my liking, and it won't 
address what I'm dealing with, in any case.

Onward and upward. I won't stick to any specific order, as I've done many 
(MANY) trial and error therapies. One that stands out, is my adventure with
Psilocybin (magic) mushrooms, right here, in our apartment. A practitioner 
administered the 'shrooms and I waited for them to take effect. Scheduled for 
four hours, the "shaman" left after two, when nothing happened. Not one 
blessed thing! Inducing "visions" and memories were a complete bust; sober 
as a church mouse.

Not quite as useless, was consuming "edibles" (gummies). While the
recommended quantity did nothing, an entire unit yielded some interesting 
times. Imagine, walking around equatorial sidewalks, convinced that the 
ground was slushy with fresh snow. Imagine a blind guy trying to navigate the 
deep slush in his treadless loafers (note: Latinos, in their bottomless wisdom, 
use indoor ceramic tile to create sidewalk surfaces; traction/schmaction!). And 
hearing/not hearing Karen talking. Thinking that perhaps I'd imagined her 
saying something, and mulling that over, before asking if I'd imagined her 
asking if I was okay with her going on a spending spree. Those of you with 
experience in that field, I'll leave you to your edibles. However, I can safely say, 
that THC does not cure Apraxia!

There was also a couple in North Carolina (who split their time between 
Ecuador and their home state), and manufacture natural remedies, including 
mineral and vegetable supplements. The goal of Mikki's ministrations, was 
to flush the remnants of the AZ shots out of my body, believing that this might 
alleviate the symptoms. One of the prescribed (out of ten or so) pills and
powders was derived from a fungus on birch trees. A delightful flavor (blah!), 
when mixed with water which, with its companion concoctions gave me as 
much relief as my daily baby aspirin. Two months of twice-daily pills.

Thinking that there might be an even deeper mental cause, I went to see 
a psychiatrist, to see if perhaps anti-anxiety meds might fix me, He happily
 prescribed Clonazepam for a short bit. Not feeling any positive change, he 
added another(whose name escapes) anti-anxiety drug. Even together, no 
positive results.  Blood-flow to certain parts was affected, however, 
and I weaned myself, ASAP!

All of this was being done, in concert with my Canadian-trained neurologist 
(she of the discomfort around eyelid injections) and Margarita was very 
supportive of any theory that had some credibility and lacked danger. The 
next adventure was at her urging and was administered by a neurological 
scientist (and doctoral students) at the local Catholic university. The treatment
 is called Trans-cranial Magnetic Stimulation (TMS), in which incredibly 
powerful electromagnets are placed on the skull of an affected person. 
Normally used for anxiety and depression (replacing electroshock therapy), 
rapid pulses of magnetic energy are focused on affected area(s) of the brain. 
While Margarita had strongly recommended the area of the brain, concerned
with eyelid movement, it seems they went with their own protocol, focusing on 
the motor cortex (or some such) for a month of daily treatments. I only 
discovered this discrepancy, the final week, and a change was not in the offing.

The university was an hour's bus ride away, and each day, I spent a total of 
three hours between treatments and mass transit.  How did I navigate, you 
ask?  One word; stubborn.  Karen was willing to be my eyes, but I insisted 
on struggling my way through this and, after a few times, it wasn't so tough.

Latinos, in their infinite  wisdom, do NOT consult with one-another,so 
Margarita didn't check-in to see if her recommendation was being followed.  
That left this poor Gringo to the care of the clinician, Esteban. Delightful 
young man, he happened to be a musician, and is enamored of the 
music of my youth. So, we spent each hour enjoying each others' tunes 
(well, mostly mine) and bonding over some really awesome albums.

I managed to wrangle another week, with the pulses focused on another area 
of the brain. A fair bit of negotiating and wheedling, at long last had a much 
more powerful pulse applied to the part of my brain that was indicated. Sadly, 
two weeks of this changed nothing and we parted ways.

Next was the uncle of our friend and guide, Felipe. Uncle Servio lived near 
the coast, four hours away; so Karen, Felipe and I made a weekend of it, 
staying in a rustic little farm accommodation. Seems the city of Machala 
was a bit dangerous, and staying near the doctor was a poor idea, so we 
stayed at "Happy Fruit", an hour away.  Servio uses and injects a 
German-sourced medicine called "Procaine" to cure most anything, 

Of course, I heard "cocaine" and got excitedly right down to it turns out it's 
related to novocaine, and was injected along the scar of my heart surgery, 
the area around the AZ shots (another "anti-vaxxer, Dr Servio) as well as 
around my eyes. That was Friday, and no results were felt. Saturday we 
returned for round two. This time, the shots were inside my mouth and 
throat. While Felipe could hold the light for the doctor, he could not 
observe my tonsils being injected, I think Karen averted her eyes as well. 
Brave Servio didn't flinch, and neither did I. Sadly, no result.

Round three with Dr Servio took place at our home. He'd asked me to get a 
panoramic of my teeth and send it to him ($15 for the x-ray). He was excited 
to see the file, as it confirmed something he'd suspected; I still had my 
wisdom teeth!  His theory was that the teeth were impacting my skull 
(muscles, nerves, etc), resulting in my condition. When he dropped-by 
with his handy doctor bag, complete with syringes and (you guessed it) 
procaine, he sat me down and injected the stuff on both sides of each 
wisdom tooth, to simulate their removal. The thought being, that if my 
eyelids worked, his theory was correct, as the numbing effect took hold. 
You're probably used to this by now, but no change, At the end of the visit,
as the freezing wore off, my lids 
remained firmly down.

So, what next? I'd done some acupuncture,  massage, started going to a 
gym for cardio (at the recommendation of one psychologist) and 
weight-training (still going, a year later), lost weight, to the delight of our 
nutritionist, my cardiologist and our GP. Continuously do mental puzzles and 
Spanish learning work, just in case. Alcohol consumption is way down 
(practically none) We've continued tutoring English several days per week, 
not forgoing social connection or staying at home. Which only proves how 
stubborn and unwilling to give up. I've broken three glasses and stepped 
on the cat only twice (he's since learned to take a defensive posture when 
I'm around).

It seemed I was left with two options (three, if you count Margarita's 
suggestion of implanting electrodes in my skull), accept that I may be
blind(ed) forever or continue to be open to something new, whatever that 
may be.  Despite three psychologists and a psychiatrist assuring me that 
there wasn't anything 'mental" about my condition, the occasional 
eyes-wide-open experience, predicated on nothing at all, seemed to indicate  
there was some willpower/psychological/muscular/dumb luck element to this. 

Therefore, I'm seeing, Nick, my physiotherapist, to see if we can combine 
exercise with cognitive efforts.  Nick is an American, young and in love with 
an Ecuadorian girl (marrying at the end of June). Though not the same as 
Bell's Palsy (told you we'd come back to that), there are similarities, enough 
to warrant using some of those therapies for me.  Nick has shown a great 
enthusiasm and initiative, in exploring my condition both in online investigation 
as well as consulting with US colleagues and professors. He even shared that 
there were two types of Apraxia, which (being the smart-ass) I immediately 
sent to Margarita, who confirmed the "ideomotor" version. Not that it's any help, 
since it isn't my type of APRAXIA.

Then the idea that Nick might work with my psychologist, Anna 
(another Gringa), to explore the possibility that the psychological may have 
some sort of impact still, though not exclusively. Both seem rather intrigued, 
if not enthused at the idea of collaborating to work toward a solution (I need 
to be careful about using the word ("cure") with me. Not to be too down on 
Latino culture, but this seems not to happen outside of North American circles, 
so I'm grateful to them both. Not gonna count any chickens, but the physio 
seems to be having an effect, Certainly not predictable nor controllable 
(might even be placebo), but I sense the severity receding at times and 
am hopeful that this collaboration may yield more results. I'd likened it to 
those "magic-eye" puzzles, where you have to do two things at once; relax 
your eyes and yet force them to focus in a certain way, to see the 3-D image,

I'm encouraged by the concern, thoughts and prayers of all who are aware 
of my challenges, and though I can perceive a certain expectation of recovery 
from some quarters, I've learned to not let the fear of disappointing my loved 
ones prevent me from seeking new options. Please feel free to share this 
missive with others who may have an interest (saves me from having to 
explain my situation repeatedly).  

Thank you,

Sieg Braum



 

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