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Sept Update From the PNP

News from the PNP

September is Spinal Cord Injury/Disease Awareness Month!

Commit yourself to creating awareness and educating your family, friends, and community around prevention, and the effects of spinal cord injury/disease.

Advocate for resources and get involved with organizations that assist those with spinal cord injuries/disease, and other disabilities.

Perspectives in Assistive Technology prepares for its 13th year

David Jaffe, who teaches “Perspectives in Assistive Technology” at Stanford University, is soliciting student project ideas from the community for the course starting this January. The course teaches students about the needs of the disabled community, and about how to take an identified need and solve it with a new invention. Each year, the course starts off with a number of project suggestions, presented by other students, health care professionals, members of the disabled community, as well as friends and family members. To read more about how you can contribute to this wonderful program, check out the official class web site at: http://engr110.stanford.edu/

Introducing the Bay Area Association of Disabled Sailors

The Bay Area Association of Disabled Sailors (BAADS) seeks to make all aspects of sailing accessible. To fulfill this mission, they offer weekly small boat sailing, keelboat sailing, and Veterans sailing out of South Beach Marina, adjacent to AT&T Park. In addition to their weekly sailing programs, BAADS hosts and participates in a variety of regattas and informal races both locally and internationally. To find out about racing opportunities, visit their race page. To learn more about how you can participate, read more about BAADS at http://www.baads.org/

Free information and support from the Christopher and Dana Reeve Foundation

Whether you are newly injured or a long time SCI survivor, this guide has something for you.

The Christopher and Dana Reeve Foundation has created a free comprehensive guide that is an essential tool for everyone living with or impacted by paralysis.

You can download copies to your phone, tablet, e-reader or computer, and you can request hard copies be shipped to you. The Paralysis Resource Guide third edition is currently available in print – English or Spanish. Click here to download your own copy.

How to Hear (and delete) Google Home and Amazon Alexa Recordings

The invention of voice controlled assistants has been a boon to the disabled, allowing us to independently control our environment through voice commands. Some people are reluctant to embrace this technology because of privacy issues. The main privacy issue is that these devices sometimes hear and record a lot more than we think. They can record every sound in their proximity, including private discussions about your health and the voices of your children or grandchildren playing nearby. The idea of some unknown person at one of these companies listening to you and your family can be creepy at best.

Now there is a way to hear what’s been recorded by these devices and you can even delete any recordings that have been saved on the Google and Amazon servers. Here’s how to do that:

Google Home: https://pattnet.us/2wW3NEY

Amazon Alexa: https://pattnet.us/2wPI4PS

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Celebration of Life Services for Annamarie Moreno

Kindness, Hope, & Love
My Beautiful Friend Annamarie Moreno

A photo of Annamarie Morino (on the right) and Ligia Andrade Zuniga (on the left)

Annamarie Morino (right) and Ligia Andrade Zuniga (left)

Para Leer En Español

I’m not really sure how it was that I was in touch with Annamarie, whether it was an email or phone call requesting I visit her, or just in my rounds on the 1st floor of the rehab department in the Santa Clara Valley Medical Center. You see, I sustained a spinal cord injury in 2009 in which the Peer Support program was invaluable and  influential in my physical and emotional recovery. I joined the program as a Peer Supporter because I wanted to provide the same hope that I received after my SCI to other people experiencing the same kind of injury. So did Annamarie.

The day I met Annamarie I remember rolling into a dimly lit hospital room with mixed emotions, excited to share my story and support with someone who had just experienced the same thing I had, and saddened by the same idea. A tall slender woman with long dark hair and a very calm demeanor greeted me. She looked very tired and sad. She stood up and smiled, she introduced herself, and if I remember correctly as Annamarie’s aunt. I introduced myself and explained what my purpose was for the visit. She then introduced me to Annamarie, a young woman with long dark hair, big expressive eyes, and a beautiful smile. “Hi, my name is Ligia,” I said. “Hi, I am Annamarie,” she replied, and that is where this friendship began. I proceeded to tell her all about my injury and my experience right before, during the medical process in the hospital, and how my life evolved thereafter leaving the hospital. I asked her about her life, about who she was, and what brought her to this place. after all, we are all just human beings living life connected by this unfortunate circumstance.She was very forthcoming, very trusting, but most of all very kind. We talked for over an hour like we had been friends for years. another one of the reasons I knew that our friendship would flourish was that she asked me about my shoes. That day I was wearing my bright yellow wedges that made my legs sit tall and proud even though they had no life in them. The brightness of the yellow attracted sunlight and positivity. “When will I be able to wear shoes like that again?” she asked. “You’re going to be just fine,”I replied. Our friendship was meant to be.

I went to visit her a couple more times after the initial visit, but discharged time came and I just waited to see her again at one of the Peer Support meetings, or chat with her over the phone when she was home. Over the years we’ve shared conversations in person, via Skype, over the phone, and via text message. Our friendship developed quickly being that it was so easy to be friends with such a loving and amazing person. Our children were around the same ages at the points of our injuries which exchanging parenting tips brought us even closer. Annamarie and I had planned to start a peer group for the young and/or adult children of individuals with SCI to share their experiences, their fears, anxieties, high points, and low point of this journey with their parents and how it has affected them. Unfortunately, we kept postponing our beginning date, and it never happened. Annamarie loved her children, they were her life. There was nothing she wouldn’t do for them, and the ultimate purpose of acceptance and moving forward was for those two kids. This was the fountain this passion she had around our project overflowed from.

Although I have many memories of Annamarie,  of many conversations, many laughs, many tears, my most favorite memory was when we went to a concert for my birthday with my mom, and my sister-in-law. Because Annamarie’s birthday was around the same time, we made it a celebration for both. When we got to the venue we couldn’t find each other. I think we were both going around in circles, and as soon as one of us would get to a certain point, the other one would have just left. This happened over and over for about half an hour. Finally! We found each other! I remember Annamarie rolling through the door with her bright pink lipstick radiating from her gigantic smile and her beautiful bright pink cardigan. We had so much fun that night, we laughed so hard we got a headache, lost our voices, for that moment in time life was good.

Supporting one another whether it be through a formalized program like the program we were affiliated with, or just casually meeting people, the power of human connection is what allows our souls, our spirits to recover from tragedy and loss. It is not a coincidence that she and I became such good friends; at that time in my life I needed some light. My life became that much more colorful and vibrant having her as a friend, We meet so many people throughout our lives, some come and go, but some leave a permanent imprint. That is what Annamarie left in my life, a permanent imprint of kindness, hope, perseverance, and love. You see, I didn’t just help her in her recovery; she has also helped me in mine. She always thanked me for guiding her through this, but she also guided me at times. I will miss my friend Annamarie Moreno.

“Don’t walk behind me, I may not lead. Don’t walk in front of me, I may not follow. Just walk beside me, and be my friend.”-Albert Camus

Annamarie Moreno, age 33, passed away on July 12, 2018. Annamarie was a woman of strong faith and love for God. She loved singing, dancing, sewing and spending time with her family and friends. She was a beloved Mother, Daughter, Granddaughter, Sister, Aunt, cousin and a friend to many. She will be remembered for her beautiful smile and love she had for people. She will be greatly missed by all who knew her.

Annamarie was a SCI peer supporter at Santa Clara Valley Medical Center where she spent her time following her spinal cord injury in 2012 and had a beautiful smile from day one.

Family and Friends are invited to attend:

Celebration of Life Services
July 20, 2018 at 3pm
Mt. Pleasant Christian Center
3535 Clayton Rd.
San Jose, Ca 95127

Reception immediately following
St. John Vianney Community Center
4600 Hyland Rd.
San Jose, Ca 95127

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Updates from the PNP, May 2018

News

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

News:

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

News
*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.

Read more at

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

https://pattnet.us/2C7y7y0

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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