Updates from the PNP, May 2018


VMC Rehab Releases New Video


The passing of Stephen Hawking

Physicist Stephen Hawking in Zero Gravity NASA

Stephen Hawking, floating in “zero gravity” at age 65, despite being paralyzed since age 21 by ALS.

It’s been a while since our last post, and during that time the renowned physicist Steven Hawking passed away in March, 2018.  He lived 50+ years longer than expected.  He was an inspiration to me and it was while reading one of his books, during my rehab in 2013, that I was finally able to turn the pages in the book.  After more than a year in the hospital, regaining that ability was really significant to me.

Privacy Policy rollout

We have released a draft of our Privacy Policy.  Please check it out at https://www.patterson-net.org/privacy-policy/ and let us know if you have any feedback, corrections, or suggestions.

PNP Site Tricks

Here are a few things worth trying on your next visit to the PNP site:

  1. You can leave a comment, on any post, without logging in.  Please give it a try; we’d like to know if this feature is working properly.  All comments will need to be approved by one of our moderators before it appears on the site, so please be patient if your comment takes a day to show up.  We do this to avoid spam comments.
  2. If you haven’t already tried this, here’s a quick and easy way to give the PNP site a new look, plus it may be easier on your eyes as well.  On the right hand side of the home page, click on the text that reads “Toggle High Contrast.”  If you don’t like the way it looks, click on that text again and the display should return to normal.
  3. Most of the history of the PNP emails (mostly after May 2016) is available at https://patterson-net.org/pipermail/pattnet-announce/ .  Archives before May of 2016 were handled differently, and are not in these archives

Improving Your Next Stay at a Hospital

By the end of April of this year, I’d already spent three separate stays in the local Intensive Care Unit (ICU).  While the hospital staff did a great job getting me well enough to go home, I learned a few things that could have made everything go better.  Here are a few things that I could have done better:

  1. Always carry an up-to-date copy of your medications with you.  Actually, three copies are better than one.   One copy is for the Emergency Department (ED), another is to give your nurse if you end up being admitted, and the third copy is for you to keep.  Hospital staff usually prefer to see the list organized by medication (one med each row) with your dosage and then when you take each as columns.  Here are two examples:
    1. Allegra  180 mg   once a day after dinner
    2. Vitamin C 500 mg  with each meal
  2. Try to keep a few days worth of each of your critical medications with you at all times.  Most hospitals don’t have every medication in their pharmacy, and they may even ask you to bring some of your medications from home.  If you do need to bring in meds from home, the hospital pharmacy will need to check them out, and it helps if keep your home supply in their original prescription bottles.  Be sure to get any of these meds back when you are discharged from the hospital.
  3. Notify the hospital of any food or drugs that you are allergic to.  It ultimately is our job to know what medication the hospital is giving us, and to be on the alert for food or meds that could harm us.
  4. If you have any special needs, tell the staff about them before they become problematic.  I’ve found that most bay area hospitals are unfamiliar with common needs of people living with an spinal cord injury, bowel care being one significant example.
  5. You may be asked to bring in some of your own equipment, such as breathing assist devices (CPAP, BIPAP), and eating assist tools (cuffs, special silverware, plates).
  6. The hospital staff is there to help; be nice to them!  By the time a nurse or aid responds to our press on the call button, we’re often in pain and frustrated by the wait.  Still, I’ve found it worth the effort to treat everyone with kindness, including the housekeeping and maintenance workers.  We want them to feel comfortable coming in to help us!
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