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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Self Care, News

In This Newsletter

  • Self Care Tips For Every Body
  • News (after main article):

From BORP, Wheelchair Basketball, Seated Tai Chi, and Cycling Center
New Events from SVILC
DREDF Action Alert: H.R. 620 passed in the House of Representatives!
Spotlight on CPANYS (Coalition of People of dis-Abilities of NYS)


Self Care Tips For Every Body

“An empty lantern provides no light.Self-care is the fuel that allows your light to shine brightly.”-Unknown

We are back! What a month and a half it has been! Often we are at the mercy of our physical conditions. It’s important to listen to our bodies, minds, and souls for rest and replenishment before it’s too late. Sometimes we don’t listen right away and things get out of control, hence the silence for the past month and a half. From pressure sores, to chronic pain and fatigue, not to mention the dangerous flu season it has been, self-care is a necessity.

Looking back at how we were and who we were can be a hindrance and an unreasonable expectation of where we are and who we are now. It’s definitely not easy to have a balance between the two. It’s not to say that we just lay around now with the excuse that we’re just not the same. It is the acceptance to the changes that are occurring within us, or have occurred and being patient with ourselves and our possible limitations. All of this can bring self-doubt, depression, sadness, mourning, and frustration. It is a very valid way to feel when things have changed so drastically. However, the one person who must be the most patient, understanding, and loving person to ourselves is us. If we don’t take care of ourselves, no one else will.

Here are some easy ways to take care of ourselves each and every day. Do not feel you have to adopt each and every one of them into your life, take what you feel is relevant to you, and leave the rest.

  1. Let go of control. You don’t have to have the answers to the world problems. Life is meant to be an adventure and full of mysteries. You can’t control all events and should learn to embrace the unknown. Follow your instincts with grace, and grace and love will lead you in the right direction.
  2. Learn to accept your life. It may not be perfect, but it is what it is. List your best assets and be satisfied with your life as it is. Find the special ways that you have been blessed and concentrate on the special skills that you have.
  3. Find a special place where you can be quiet and alone with your thoughts. There is so much rushing in our lives, over stimulation with our technical gadgets that we forget to stop, be quiet and listen to the wind. Your special place may be a park, garden, room in your house or anywhere you can turn off the noise and listen to the quiet. Take a few moments every day to close your eyes listen to the grass grow.
  4. You are totally unique! No one else has your good qualities. Don’t compare yourself with others. Every person has personal and health issues and you don’t know what their struggles have been. Uses your uniqueness to find what is needed to reach your goals.
  5. Create Joyful Rituals. Create rituals of joy like spreading the bed and drinking lemon water every morning. Create simple easy to do rituals that ground your day and you’ll find your way “home” no matter what life throws at you.
  6. Conquer scary tasks. Take one small step at a time and soon the task will be conquered. It’s so easy to find a hundred excuses for why you’re not ready to do something you’ve dreamed of. To reach out to someone who could change your life. To apply for that job you’ve always wanted. Remind yourself of how short life is. In the end, any discomfort or rejection won’t really matter. The only way to achieve things you want is to take bold actions. If something scares you deeply, it means you want it deeply, so go for it.
  7. Cherish Your True Friends including your internet friends. Surround yourself with true friends. Friends who’ve seen you at your worst, and love you even more for it. Friends you can be crabby and miserable around and yet they strive to make you laugh. Internet friends can be supportive and as precious as friends who visit in your home. All those friends are priceless.
  8. Know Your Strengths. Our weaknesses are always shouting out for our attention. Try to instead focus on your strengths. You have so many. Focus on them and use them daily. List them out so you never forget what they are. Build your life around them.
  9. Eat as Many Greens as Possible. Greens, greens and more greens. Fruit too. The more you eat them, the more your tastebuds change and you realize just how delicious food from the earth truly is. The lighter you feel, the better your skin looks, the more energy you have.
  10. Reduce/Eliminate Animal Products. As you may know, our food production system is a disgrace; to animals, to our health, to the environment. We fill our bodies with an abundance of hormones, chemicals and pesticides and support awful places with our everyday food choices. Whether you’re an animal person or not, eating more from the earth and less from the factories lightens both your plate, your arteries, and your spirit.
  11. Exercise Regularly. Regular exercise can transform your life. Find the appropriate exercise for your body. Start slow and add a little time each week. Measure your activity and chart your progress. Make time for exercise, it will give time back to you.
  12. Stand up for yourself. Being nice and being a doormat are two very different things. Be strong and stand up for yourself, don’t be afraid of offending others with the truth. Use your voice and don’t let people walk all over you. Being a doormat robs you of your voice and leaves you angry and resentful. Be strong!
  13. Forgive Yourself. Forgive Others. Forgiveness is one of our most powerful allies. Forgive the people in your life who harmed you and forgive yourself for your own mistakes and you will liberate yourself from pain, anger, resentment and negativity. Anger, grudges and resentment sap your energy and hurt no one more than the person holding them.
  14. Stay Away from Negative People. Avoid people who are mean and nasty. Choose carefully who you keep in your life.
  15. Don’t Be a Negative Person. Don’t get drawn into negativity. It brings down your vibration. Always remember who you are and who you want to be. Be nice to people, to everyone. Support people and their dreams. Love as you’d want to be loved. Strive to be nicer and do better. Being a positive person attracts other positive people.
  16. Don’t Live on Facebook. Facebook is great and it’s fun to be social. And if you have an online business, it’s priceless. But reading through facebook statuses too often can lead to “facebook depression.” Facebook is like an advertising campaign for everyone’s life. It’s all shiny and sparkly and well-crafted to present the best. That’s only the face that people want to show – not quite real – but an edited version of their life.
  17. Allow Yourself to Feel Whatever You’re Feeling. If you are down or hurt know that it will get better and focus on the positive feelings. If you don’t want to leave the couch. It’s okay. Let yourself sulk, get it all out of your system. Don’t fight it because “what you resist, persists.” So don’t resist. The sooner you get it all out the sooner you can move on.
  18. Breathe Deep. Deep luscious breaths from way down in your diaphragm. Deep breaths clean your lungs and refresh your brain.
  19. Embrace Your Imperfections. Your imperfections are your perfection. Embrace them. Let them reveal your individuality. Laugh at them if you need to. Perfect is boring. Imperfections make things interesting. And behind every imperfection is a strength.
  20. Share your life. Find a really nice person to be with you as a date/Co-Habitat, partner, or special friend. Who needs a bad-ass (in the arrogant, self-centered, high school maturity level sense of the term), being nice is way sexier, more secure, more comforting, more loving, more stable, and all around more awesome.
  21. Read Non-Fiction to Expand Your Mind. Read Fiction to Expand Your Imagination. It’s inspiring for the imagination, a great distraction and such a good way to end the day. Reading can be educational, inspirational or just fun.
  22. Watch Less TV. Such a hard habit to break. Too much TV robs you of time and social interaction. Goals fly out the window. Motivation gets lost. So does conversation. TV’s addictive and it lures you in, try to keep it in moderation.

The above used with permission from: http://strongsensitivesouls.com/25-self-care-tips-for-the-body-soul


From BORP, Wheelchair Basketball, Seated Tai Chi, and Cycling Center:

We are hosting the 2018 West Coast Conference Wheelchair Basketball Championship at Stanford University where we will be cheering on the BORP Jr. Road Warriors. Our Fitness Studio has a full schedule of classes, including this month’s featured class: Seated Tai Chi on Tuesdays at 10:15 am. On March 3rd the Cycling Center opens for the 2018 season.

New Events from SVILC

We’ve added a number of events to our public calendar, including seven workshops and events at the Silicon Valley Independent Living Center as well as Power Soccer 2018 on Mar 10, 11, and 17  Please come check it out at https://patterson-net.org/test-event-list


DREDF Action Alert: H.R. 620 passed in the House of Representatives!

Tell your Senators to Oppose H.R. 620

Do Not Roll Back the Protections of the Americans with Disabilities Act!

Call the U.S. Capitol Switchboard today at (202) 224-3121 and ask to be connected to your Representative.

Email your Representatives: Contacting Congress provides unique links to email your Representative directly.

Read More at https://dredf.org/hr620/

Spotlight on CPANYS (Coalition of People of dis- Abilities of NYS)

If you use Yahoo, you might want to check out this group.  Although they are based in NYS, they discuss topics that are of interest to everyone involved in the disability community.  You can even subscribe to weekly updates by joining the group.  To join, you’ll need a free Yahoo.com account.  You can learn more about the group at https://groups.yahoo.com/neo/groups/CPANYS/info

The CPANYS (Coalition of People of dis- Abilities of NYS) associated with
consumers, clients, activists, health care providers, professional organizations working, representing, advocate on behalf or with people with disabilities and seniors. The CPANYS is searching for information, resources, services, alert about changing policies, and encourage PWD and SENIORS to full participation in their life by increase appropriate regulations and legal protections.

This group gives great opportunity to share information with other groups and organization, promote their activities, finding the answer for the problems of people with disability and seniors, consumers and clients and to achieve the main goal – helping PWD and SENIOR to life their life independently.

From their latest newsletter:

Continue Reading Self Care, News

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Planning for 2018, Important News

In This Issue

Purpose and Goals for 2018

*VMC E.R. doc suffers a traumatic SCI in Nov, starts walking weeks later
*Introducing Ligia Andrade Zúñiga

Purpose & Goals for 2018

The new year always brings a time of reflection of the previous year, along with planning the upcoming year. We are motivated to plan our year around different reasons, having a goal is very purposeful. So what is the purpose of the goals we will set for ourselves this year? Do they align with the purpose that we have set for ourselves in life? Where is our purpose coming from? What is the motivation? This year the PNP will be focusing on topics that are more aligned with Richard Patterson’s purpose. His purpose for this project was to connect and bring community to individuals who have acquired a spinal cord injury (and/or a traumatic brain injury) to enable their participation in peer support, post discharge, regardless of their location. Bringing up to date, relevant, exciting information is important to keeping our community connected. We will be more interactive, more up to date, and open to collaborations.

We are bilingual! If you or anyone you know would like this information in Spanish please contact us. If you have any ideas around topics you would like to see covered, please let us know! We appreciate any feedback! We wish everyone a wonderful 2018!

News and updates:

VMC ER doctor receives “ultra early” novel therapy to treat a serious spinal cord injury, and he’s already on his feet!

After suffering a serious spinal cord injury on Nov 15, Dr Wetschler received treatment using new protocols at Zuckerberg San Francisco General Hospital.

The SJ Mercury News wrote, “The innovative protocols — developed by a team at Zuckerberg including Dr. Geoffrey Manley, chief of neurosurgery, and Dr. Sanjay Dhall, director of spinal neurotrauma — use advanced MRI imaging and neuromonitoring, focused on maintaining sufficient blood flow within the spinal cord.

It’s something that Dhall said Friday must be addressed within 12 hours of a spinal cord injury to be effective.”

While nobody is saying that this promising treatment means that we’re closer to a general cure for SCI, we are hopeful that it represents a big step in the right direction.


https://pattnet.us/2DJxhHY (includes video)


Introducing Ligia Andrade Zúñiga

Ligia Andrade Zúñiga been a dedicated peer supporter for 8 1/2 years following her spinal cord injury in January 2009. She is a new contributor to the Patterson Network bringing a new perspective while bridging communities.

Continue Reading Planning for 2018, Important News

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Not Just The Holiday Blues

The holidays are a time for joy and excitement. Shopping, spending time with friends and family, eating good food, and traveling are all parts of the holiday season that brings people much happiness. However, for a population of our community the holidays are not so joyous and can bring feeling of sadness, depression, and loneliness. These feelings, especially for people living with spinal cord injury and other conditions/diseases can become out of control very quickly. Being able to identify the symptoms as soon as possible and address them is very important in preventing the downward spiral.

In “Managing Depression with a Spinal Cord Injury”, posted by lisagetsocial in Wheel:life, www.wheel-life.org, “Depression is an illness that affects one in 20 Americans, however it affects one in every five individuals with spinal cord injury causing isolation and negatively affecting interpersonal relationships. Depression in individuals with spinal cord injury is higher than average due to the physical physiological changes that occur in the body, and is not to be mistaken with feeling short-term sadness. Depression is not caused by personality issues, or lack of willpower, it is not the fault of the person who is experiencing it. Life stresses and medical problems can alter brain receptors called neurotransmitters causing chemical imbalance the brain. In people with spinal cord injury the risk for depression is highest in the first five years after the injury.”

In the article “The Symptom of Depression We Don’t Talk About” published on The Mighty, written by Jenna B, “People with depression can feel sad and empty much of the time, have changes in appetite or sleeping habits, be fatigued, have decreased feelings of pleasure in things that would normally bring them joy, and possibly even have thoughts of death or dying. But the one symptom of depression you probably don’t know about, and one of the hardest ones to deal with, is severe loneliness. Depression is a disease of acute loneliness, and connecting with other people can make all the difference in your recovery.”

If you feel any of the symptoms above, there are some ways to prevent these feelings from becoming overwhelming. Here are some suggestions on how to manage this type of situation.

(Please keep in mind that these are suggestions that are not to be taken as medical advice*. The suggestions below are not to be used in place of medical advice from a licensed physician.)

  • Antidepressants (advised, prescribed, and monitored by your physician)
  • Cognitive Behavioral Therapy (talk therapy, referred by your physician)
  • Exercise (talk to your physician about any limitations on your exercise plans)
  • Have sex
  • Laughter, do something you enjoy
  • Seek out and get support from friends and family
  • Spend more time with your pets, perhaps get a pet if you don’t have one
  • Turn on more lights, don’t sit in the dark
  • Get some direct sunlight if you are able to, Vitamin D deficiencies can be directly related to depression (again, something to speak to your physician about)
  • Talk to someone in your place of worship, if you have one (priest, pastor, rabbi, etc)
  • Attend a peer support meeting near you (check our calendar https://pattnet.us/2BCQj5H to find a peer support group meeting near you )
  • Find online resources. If privacy is a concern, look under the “help” function on your browser (Chrome, Safari, Firefox, etc) and learn how to use the “incognito” or “private browsing” option
  • Get assistance from a hotline or advice line

Peer support is extremely important for individuals with spinal cord injuries. It not only allows for new ideas and management of the condition, it also validates the emotional aspects of our recovery. People often forget that our physical bodies are not the only part of ourselves that need to recover. Our emotional, psychological, and spiritual selves require recovery as well. People who attend these meeting truly understand what you’re going through because they’ve gone through it themselves.

According to Stan, leader of the Sonoma-Marin SCI Peer Support Group, (https://pattnet.us/2ANizil), “If you’ve never been to one of our meetings before, this would be a great opportunity to meet other people fighting similar battles like the battles that you are facing. Lots of our members have successfully overcome their challenges, and eagerly share their successful strategies with others.”

For Peer Support Groups in your area, take a look at our calendar at https://pattnet.us/2BCQj5H to see when and where the support groups meet.  You can also check our list of peer support groups at https://pattnet.us/2oGVE6z

In the spirit of peer support it is up to us to make sure everyone in the SCI community is taken care of both physically and emotionally. Looking out for each other is important, especially because many of us relate to each other in different ways that others cannot.

*Disclaimer: This article is about a medical condition. The article is meant to be informative only and does not substitute for medical advice. Please consult a physician for medical advice for your specific situation. Depression can be a serious medical condition. If you think you are in danger of harming yourself or others, call 911 or a crisis line immediately.

The national toll free crisis line number is 1-866-427-4747 .

Remember, depression is treatable!

Read more about SCI and depression at the Reeve Foundation at https://pattnet.us/2CjeXVw

Read more about SCI and depression at the University of Washington’s site at https://pattnet.us/2yFbMVQ

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S.1 Tax Cuts & Jobs Act (TCJA)

Dear Patterson Network Project Community

Late breaking news: The vote on the Senate tax bill was postponed because there were not enough votes to approve the bill. The sticking point is that fiscal conservatives want to see a workable plan to deal with the projected deficit if the cuts fail to result in increased tax revenue. This is a good time to contact our Congessional representatives, even if you’ve already done so.

I wish to thank Ligia Andrade for her contribution to this article.

A few days ago the GOP tax bill was pushed forward through the Senate Budget Committee moving on to the Senate floor preparing it for vote by Friday morning December 1, 2017. The passing of this bill will cause significant changes and devastation to health and social services especially for individuals with spinal cord injuries and other disabilities. It is important to educate yourselves on the significant impacts this bill will have not only now, but for years to come.

It is not too late to understand the effects and contact your representatives. Here are the areas of concern…

  • Despite the varying opinions on the Affordable Care Act there are an estimated 13 million people who depend on this for health coverage are expected to lose access to health insurance completely.
  • Whether the individual mandate is expensive or not for different individuals, healthcare premiums are projected to increase 10% each year over the next 10 years as a result of the tax cut bill.
  • Eliminating the ability to deduct health care costs from taxable income will hurt the elderly, disabled, and chronically ill who rely on these deductions to afford to stay in their homes instead of being institutionalized. When coupled with cuts that are projected to be made to Medicare (see below) this will be especially devastating.
  • Charitable contributions are significant for nonprofit agencies that provide services to the disabled community along with the general population, alleviating their dependence on government funding allowing for funds to be used for things that are not restricted by the donors. Reduction in charitable contributions to nonprofit agencies is expected to lead to a reduction in funds available to the disabled and critically ill population.
  • Many individuals with spinal cord injuries and other disabilities depend on certain medications that treat our very specific disorders. Reducing the tax credit to businesses that develop these types of drugs, which are expensive to produce is forecast to result in a 33% reduction in the availability of these medications.
  • Additional cuts to “non-entitlement” programs such as Vocational Rehab, public housing, public transportation, education, employment, and other programs that are specifically for individuals with disabilities, or used by individuals with disabilities will be made.
  • 4%-$25 billion could be cut from Medicare, affecting millions of individuals living with spinal cord injuries and other disabilities, devastating their lives in many different ways. For example, the cost of something simple such as catheters, DME, in-home care services etc. are all funded by Medicare and will be significantly affected.
  • $1.5 trillion is projected to be added to the national debt as a result. It is expected that the shortfall will be financed by cuts in Medicare and other health related programs.

Please use the link below to find and contact your local congressional representatives to find and contact your local congressional representatives.


For more extensive information on how this will affect individuals with spinal cord injuries and other disabilities here are some links to other disability related websites and their take on the impacts.

United Spinal


Disability Rights Education & Defense Fund


Disability Scoop


American Civil Liberties Union


California Foundation of Independent Living Centers


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