My CAPOS Neurological Appointment!

Dear friends!

I am so very sorry to keep you all waiting for Any New blog from me! I have no idea why I have become so uninspired to write… It is inexcusable!

I hope this tread will reverse itself and I’ll be back to my daily blogging!

Anyways, as mentioned on Facebook, that I saw my Neurologist for CAPOS on July 8th. And, for the first time, I am actually satisfied with the results.  She made many recommendations and referrals within the two hours that I was there!

Here is a summary of what happened.  For the Longread, please consider buying the book…

With my amazing wife by my side; we met first with a nurse who listened to my issues, made notes and ran the routine tests: Blood pressure was not at its best, my heartbeat was found to be palpating, which is a slow/fast/slow beat.  She made a note of that for the doctor to pursue.  Next, my height & weight were recorded by her, forgotten by me, written down by my wife.  I also explained my income, which is pretty small, and benefits, which is covered by insurance.

It was agreed that I should see, have access to, a social worker.

I was surprised to learn that a social worker would be able to see us, like, now! I wasn’t expecting that! But this clinic is like a boutique, and has many services right there! No real waiting!

So, with the social worker, we discussed Orthotics (which are inserts for shoes, I need these badly!) and braces.  My knees, lower legs and feet, sometimes my hips, but never my ankles, hurt or are in mild pain.  We also discussed in great depth counseling!  And PT/OT!

After the Social Worker left, within 7 minutes, my Neurologist entered the room!  She was tall, Scandinavian and super smart!

We talked about a lot of different things: including falling, confusion, headaches, hearing, handling things and breathing/swallowing.  She asked if I had issues urinating, to which I replied, yes… I seem to not be able to hold it for long periods.  Which I’ve noticed quite a while back.  She also asked about my heart, and I didn’t give it to her, but informed her that I have noticed some issues with fast beats and minute chest pains at odd times.

She referred me to more doctors or services with that two hours than I have had in the past 20 years!

  • Occupational Therapist: who I saw just two days ago!
  • Physical Therapist
  • Urologist, appointment made for the end of August
  • Audiologist
  • Foot Doctor
  • a Sleep Study, as my sleep apnea, proven in 2015 in Toronto, is not valid enough for insurance policies.
  • and a few others that I cannot remember right now…

The audiologist is to check my hearing, as I’ve not seen one for a LONG time! Almost 12 years? This is to see if a cochlear implant might help. Her response to that query from us was skepticism because the cochlear (the spiral tube that you hear with, I think) is right beside the cerebellum.  So, in that neighborhood, there is a lot of confusion with neurons going whacko and bumping into other neurons for no apparent reason!   Sorta like downtown Vancouver after Sympathy of Fire fireworks showcase!  Oh the chaos!  So with that confusion, the implant would not function to its best ability. She is concerned that it would be a waste of time… But we will check it out!

I also voiced issues with my leg pains, and she mentioned that it might be CAPOS connected, not arthritis!


A few other points that we discussed were: my “trances” where I seem to zone out for a minute.  Not sure why or what they are…

I asked about my emotions and if they are connected to ataxia… she mentioned the Bulbar Gland, and I will focus a full article on that.

I waited a week to do this article as I wanted my amazing wife to proofread it, which she did…

❤Note from his amazing wife! Craig this accurate you fantastic guy!❤

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The big five parts of capos

Cerebellar ataxia


Pes cavus

Optic atrophy

Sensorineural hearing loss


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