It Will Come

I looked like someone with Locked-In Syndrome 17 years ago. I've had continual progress. I talk and write now. I'm not Locked-In anymore. I probably look like someone who was Locked-In, but now types with one finger and has simple speech.

Progress would be neuroplasticity.

https://en.wikipedia.org/wiki/Neuroplasticity

I've made slow progress  for the last 17 years. I don't look the same as the day that I had my stroke. That's neuroplasticity. I'd say that neurogenesis also had to be in there.

Recovery from the 'locked-in' syndrome.

McCusker EA, Rudick RA, Honch GW, Griggs RC. 

Abstract

Four patients made substantial recovery following the locked-in syndrome of vascular origin. Clinical and radiologic features supported the presence of ventral pontine infarction secondary to basilar artery occlusion. Quadriplegia and mutism persisted for one to 12 weeks before recovery of motor function began. Improvement continued over several years. All patients regained functional though dysarthric speech. Three of the four patients are ambulatory, one without assistance. As a few patients make a notable recovery from the locked-in syndrome resulting from ventral pontine infarction, aggressive supportive therapy should be considered in the early months of the syndrome.

 https://www.ncbi.nlm.nih.gov/pubmed/7065931

That's how I look now. I have made progress much slower, though. Talking took years to come. Some still use the word quadriplegia, but I now use one hand. You can't say tri-plegia as that doesn't exist.

I move all body parts. "Plegia" or paralysis doesn't fit. Quadriparesis is the better word I guess, although I am "tri." Quadriparesis is severe weakness in all limbs.

" locked-in syndrome resulting from ventral pontine infarction"- When I went to Santa Clara Valley Medical Rehabilitation, I heard a physical therapist aide describe that my bleed was in my cerebellum next to the pons. (I could only hear then.) Some know that the pons, "pontine infarction", is associated with Locked-In Syndrome. None of this was ever written down back then. I don't think my diagnosis could be changed.

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LOLLIPOPS

What I am doing with lollipops now is purely experimental.

The lollipop is specifically used in therapy. I do not get therapy.

Lollipop Swallow from Ed Steger, NFOSD President on Vimeo.

I actually do this every day. Sucking on lollipops isn't glamorous. Work is involved.

I also use the following device for specific exercises. More information on the PhagiaFlex can be found at https://www.alternativespeech.com/?fbclid=IwAR0sXlz-IUFuWDD3AMUtFYLq9f_9fN73JidgXPFEWN6AAc7MWnl5SAtn-Fo 

I practice swallowing because I drool when I speak.

There are quite a few pauses

due to drooling.

  I did not speak like this in the hospital. As you can see, though, I do speak. It came years later. I did have the beginning of speech in the hospital. Sound came 8-9 months after my bleed. I could get out a word for Stanford 2 years after my bleed.

Swallowing will be the same. How do I know? I have the beginnings of a swallow and I changed the environment.

When I opened my eyes, my swallowing was tested. Jello was used. It came out my nose and it was in the ventilator's tracheal tube. This is dangerous! It's also a weird coincidence as to why I am alive. That tube saved my life. Without it I would have aspirated the food all the way to my lungs and died. I've said no food orally ever since.

Lollipops are an interesting food. They flavor your saliva. You don't have to swallow anything extra. They are a good start in a swallowing program. This is what I used to change my environment. The brain adapts to its environment.  (*note- lollipops must remain in the mouth for 2 hours)

15 years after my bleed, Medicare stops sending the formula for my feeding tube. My  father gets them to agree to turn it back on if my swallowing is tested again.

I still don't swallow, so I'm still in a coma. The hospital speech therapist saw something different, though. I closed my airway when I swallowed. (Closing the airway must happen before any food is presented.)

I can have lollipops now.

I will swallow. I'm just on a yearly timeline.