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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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.

https://contactingcongress.org/

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

https://unitedspinal.org/tax-cuts/

Disability Rights Education & Defense Fund

https://dredf.org/

Disability Scoop

https://www.disabilityscoop.com/2017/11/28/tax-threaten-disability-services/24464/

American Civil Liberties Union

https://www.aclu.org/

California Foundation of Independent Living Centers

https://www.cfilc.org/

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DSLC reschedules its Tech Expo & More

Disability Services & Legal Center, has a new date for their Tech Expo & More – Friday, May 11th 2018 at 10am – 3pm.  The Tech Expo & More will be held at the Grace Pavilion at the Sonoma County Fairgrounds.

DSLC postponed their 2017 Tech Expo because of the North Bay fires.  At that time, the space scheduled to host the Tech Expo was being used as a temporary shelter for people displaced by the fires.  Since then, the people at DSLC have been working to assist disable people who were displaced by the fires.

About DSLC

“Disability Services & Legal Center (DSLC) is a 501(C)(3) non-profit organization. DSLC has been the primary resource for adults, children, veterans and seniors with disabilities and their families in Sonoma County since 1976.

DSLC is one of California’s 28 Centers for Independent Living (CIL/ILC) that promotes the Independent Living philosophy through education, community partnerships and advocacy.

Headquartered in Santa Rosa (with branch offices in Napa and Ukiah), the organization serves people with disabilities in Sonoma, Napa, Lake and Mendocino Counties. DSLC serves over 2,000 people annually, providing information, advice and assistance on a wide range of disability-related matters.”

Read more about DSLC at http://mydslc.org/

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SCVMC Peer Support Program, Thanksgiving Dinner

Peer Support Program, Thanksgiving Dinner
Please join us and celebrate Thanksgiving with our TBI/ Stroke Peer Support Team, SCI Peer support Team, SCVMC staff and SCVMC past Rehab patients. We hope to see you there.
Thursday, November 16th 2017
SCVMC Peer Support Program Thanksgiving Dinner
At Santa Clara Valley Medical Center’s Cafeteria
(located in the 2nd floor of the Rehab Building)
751 S. Bascom Ave. San Jose, CA 95128
6:00pm-8:30pm
Event is free, but you must RSVP by no
later than Monday, November 13th.
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