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Everything changed

15 Feb. 2012, presented to Family Medicine Residency Program, UCSD School of Medicine 


It’s been 4 years since a stroke hit the left side of my brain.

I don’t know why a clot traveled there. But travelled it did, and I was paralyzed in my right side and couldn’t speak.

I went to Palomar Hospital and was in intensive care for 1 week, and on the rehab floor for 3 wks.
The doctors said to my husband, Greg, that my stroke was massive. In fact, people often say strokes as massive. I don’t know why this term is used so often. Perhaps massive is used because whenever an important part of a person’s brain dies, that is a massive loss. Or, maybe it’s used as a polite way of saying, you will never be the same again, because when a part of your brain dies, a part of YOU has died with it.

In any case, my “massive” stroke resulted in lots of challenges up and down my body ...
  • my right leg ended up very weak. Happily, I relearned to walk by the time I left the hospital. 
  • my right arm and hand didn’t come back for a year. They are now getting stronger, but they still have a problem with spasticity and weakness. So, now I am trying to be left-handed! 
  • My speech had 4 conditions: Dysphagia, Dysarthria, Aphasia, and Apraxia. My dysphagia lasted only about 2 weeks. My dysarthria lasted about 6 months. My aphasia lasted about 2 years. And my apraxia is 4 years and counting… 
When I had my stroke, everything changed for me in an instant …
  • I used to have a job that I was good at -- but now I knew that I would never work again and all my work friends would drift away.
  • Instead of my old job which I loved, my new job became my rehab, which I wasn’t prepared for. 
  • I had always prided myself as a good writer, but now I left out small – but not unimportant -- words. 
  • I had always been a good conversationalist – but now what came out of my mouth didn’t sound like me and often wasn’t even the sounds I intended to say. 
  • I had always loved being around people – but now I was afraid to order at a restaurant. 
  • I had a PhD – but now when I tried to speak, people sometimes thought I was retarded. 
  •  I had always loved word games and was a good speller at them – but now because I couldn’t remember how to say a word, I had a hard time spelling it. 
When I left the hospital, I came home to a life that was far different and far more difficult. At home, everything had to be judged whether it was good practice for me, unsafe for me, or impossible for me.
  • Every footstep I tried to take, I had to think which leg was I going to lead off with, how was I going to get there; and would I be have enough stamina to get back? 
  • Everything I picked up, I had to think about how was I going hold it; which hand was I going to use; and would I drop it? 
  • Everything I wanted to say, I had to first remember the words – and then how to make my mouth say those words. 
  • It was all too exhausting… and depressing. 
Back then, I figured all this wasn’t permanent, that eventually I would recover. That was only partly true.

A lot of these things have improved in the last 4 years. I can drive again; I can use the computer again; I can sign my own name again, and I can make myself understood again.

But it’s also true that everything has permanently changed for me. This is my new normal – David 2.0. This new me is a quieter me, a less active me.

But I’m trying to make the new me into a person that makes me proud and does some good.

Now I wanted to share with you a couple of slides I made:
Slide 1
  • Slide 1: Shows of the medical terms of my stroke. The way a doctor usually sees me, as a list of conditions. 
Slide 2
  • Slide 2: But this is the way that I see me. Can you see what I what I was trying to say by this slide? Symptoms are all jumbled together…confused… not easily taken out separately. Emotions are mixed in with the list. Complex. 

To help me and others like me understand and get through the complexities of stroke, I put together a website: http://strokewise.blogspot.com/. It has a lot of info and links, advice, gadgets, and – most importantly – encouragement.

Feel free to refer your patients and caregivers to it. Or better yet, show them a section yourself. I wished that a doctor would have taken the time doing that with me 4 years ago.
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