The Southern California Chapter is excited to host our 2nd Annual workshop titled Trending Topics for Living with SCI/D. We hope you continue to look to United Spinal as a trusted resource for professional development and also as a referral resource for those living with SCI/D in their quest for a better quality of life.
This years event will be a bit different from the 2018 workshop. We will have a keynote speaker talking about advocacy/self advocacy and two panel groups, the first will discuss “Life Skills and Independence” while the second will talk about “Ability and Aging”. We will have a vendor area where you can go to see equipment or learn of services available to you or those you work with.
We will offer fresh fruit, water, juice and coffee thanks to Sprouts Family Market and bagels thanks to Rehabilitation Care Coordination.
You will receive a United Spinal backpack filled with all sorts of interesting things as well as a copy of the book, “The First 90 Days” written by our friend Sam Maddox. Thanks Sam for these fine gifts. Thanks United Spinal for the backpacks.
We would like to thank Sharp Health Care for supporting our efforts all year long by providing a space for our workshops and Meet and Greet events.
Spinal Cord Injury Awareness Begins with Our Members
Our Southern California Chapter members demonstrate that a full, productive, and rewarding life is within the reach of anyone with the strength to believe it and the courage to make it happen. Spinal cord injury may close one chapter of life, but there are new chapters to be written.
After overcoming the extraordinary adversity of spinal cord injury, our members are writing their own chapters. Unwilling to accept the status quo or misconceptions of living as wheelchair users, these individuals embody the spirit of our mission and our vision of greater independence and quality of life for those we serve.
In recognition of Spinal Cord Injury Awareness Month, we’re taking a moment to honor some of the game changers and innovators who make our diverse community truly amazing.
Our Peer Mentor program is off to a great start with thirteen trained and certified peer mentors. Lindsey Elliott, peer mentor trainer with the United Spinal Association, came out to San Diego to facilitate the full day training. The feedback we received was 100% positive and it was great to see so many people completely engaged.
I want to thank the Student Ability Success Center at San Diego State University for hosting our event. They were so accommodating throughout the planning process and the day of. Thanks also to Which Wich for the great sandwiches and box lunch.
We are making plans for a great Peer Mentor section on our website, one where you will be able to meet our peer mentors and watch an introductory video from each. If you are have need for peer mentor services, please click the button below..
Every day, members of the United Spinal community face unequal access or exclusion due to physical barriers and ineffective policies, practices, or procedures. When frustrations arise in healthcare, mobility, education, work or limitations in quality of life, through grassroots advocacy, your personal experience becomes the seed that can bring about necessary change.
What Is Grassroots Advocacy?
Grassroots advocacy is an awareness initiative generated by concerned individuals that builds a community of support both on the ground and online. People seeking a solution use their own voices to contact organizations or local, state, and/or federal legislators regarding an issue that affects them directly. As a grassroots advocate, each of us has an opportunity to ‘plant seeds’ of concern and cultivate the kind of attention and action that solves problems. By sharing a personal story of need, your own experience and effort are what nurtures a movement to grow, like grass, and affect change across the country.
Anyone Can Be a Grassroots Advocate
Grassroots advocates are members and allies of a directly affected community, like you and me. This means, anyone who is personally affected by an issue has the power to act as a grassroots advocate. Many believe this is strictly the job of direct lobbyists, or those who politically advise on behalf of organizations and maintain professional lobbyist credentials, but it is not. There are also patient advocates, who support individuals on a case-by-case level in a medical setting. Grassroots advocates, instead, voluntarily speak on behalf of themselves and others for local, state or national policy change.
Planting Your Own Grassroots
When it comes to grassroots advocacy and addressing the barriers we face living with physical disabilities, we have to ask ourselves an important question: do I accept this or is there something I can do to make this situation better for myself and for others? If the answer is yes, it’s time to start planting your own seeds of change.
If you are interested in getting more involved with grassroots advocacy, speak with your United Spinal chapter’s advocacy representative and consider joining our Grassroots Advocacy Network: https://www.unitedspinal.org/grassroots-advocates-rolling-together/
— Brook McCall, MPH, United Spinal’s Grassroots Advocacy Manager
Q. I am 55 and in my 20th year as a T9 complete para. Over the past five years the skin on my feet has become quite fragile. I recently developed a pressure sore on my left heel from a minor bump on my foot rest during a transfer while I was barefoot. Although I managed to get in to see a wound care specialist within a week of the injury — when it was no bigger than the size of a pencil eraser — it took over a month of care and weekly visits to the specialist to heal it. It seems all of a sudden — through nightly mirror checks — both heels would be red from pressure. I’ve had to move to a full size larger shoe than usual to keep the pressure off my heels. Is this common in people with spinal cord injuries? Is there anything I can do about it?
A. Mark, the people I roll with have the same issues. At some point post-injury, the skin on our feet becomes more fragile, especially heels, around toes, and ankle bones.
To answer your questions I turned to Kathleen Dunn, clinical nurse specialist and rehab case manager. Dunn says that people with SCI have the same high risk for skin breakdown in their feet as people with diabetes — for similar reasons. Both groups have lack of sensation that can lead to scrapes and pressure sores. A slow healing wound on a foot or toe can quickly lead to infections such as cellulitis or osteomyelitis (infection of the bone). Edema (swelling) makes skin even more vulnerable. The good news is there are many steps that can and should be done to help keep feet healthy.
A good place to start is to avoid going barefoot, even around the house. Darryl Murphy, 58, in his 40th year as a T11 para, says, “In the first 20 years after my injury I lost toes from getting minor stubs and scrapes. I would go barefoot in my chair and stub a toe (or a few) and they would be very slow in healing. At the time I was a smoker, so it made healing even slower. Eventually an infection would set in, it would get into the bone, and then my only options were months of IV antibiotics to try and knock out the infection and hope it didn’t spread to the foot, or have the toe(s) amputated. I opted for amputation at an outpatient surgical center. I finally learned my lesson and now put on shoes before I get in my chair. And I quit smoking.”
Candace Cable, 62, in her 41st year as a T10 para, concurs. “I pay close attention to my feet because if I get any scrapes or wounds on them, it takes a long time to heal,” she says. “I always wear shoes. Even if I’m just getting up at night to use the bathroom, I’ll slip on a pair of shoes. Plus it prevents my feet from sliding when I’m doing transfers.”
Another area where it is all too easy to scrape a foot is during swimming and watersports. This can be avoided by wearing canvas tennis shoes, or better yet, by wearing neoprene wetsuit boots or thin “water socks” (around $20 at dive shops or places like Amazon.com).
“Be careful when selecting footwear. I have seen too-tight shoes cause autonomic dysreflexia,” says Dunn. “New shoes should only be worn for two hours, then removed to check for pressure areas.” Then wear them four hours, then six, etc., to make sure there aren’t any red areas. Pay close attention to heels, outside edges of feet, bony areas over the toes, and with high-tops or boots, the malleolus (bony prominence on each side of the ankle).
For people who have problems with edema, be extra sure shoes aren’t too tight, says Dunn. Diabetic shoes are often the best option, but with any shoe it is recommended to increase both size and width if feet are developing edema at the end of the day, especially because edematous skin is more vulnerable to pressure. When buying new shoes, keep the box and receipt until you’re sure they’re the ones for you.
Other foot-related pressure areas to check are the outside of foot-plate posts, and where feet rest while driving — if you transfer to the driver’s seat.
Lying in bed is another potential foot-pressure area, especially for heels and the malleolus, says Dunn. She suggests wearing pressure-relieving boots to protect these areas (found on Amazon.com for around $40 a pair). Cable suggests another option. “I stack two pillows under my calves and hang my feet over the end of the pillows. This also reduces any edema I’ve developed over a long day.”
“Feet should be inspected and cleaned daily, a bedtime foot-skin-check is a must, and an additional morning check is also important,” says Dunn. If skin becomes dry or flakey, Dunn recommends using a good moisturizer that is high in urea that helps soften dry, rough, and scaly skin, such as U-Lactin, which can be found at most drug stores, or a petrolatum cream like Aquaphor. Dunn is not in favor of ex-foliation (rubbing off flaky skin) because on areas that have no sensation, it can be done too harshly and cause more problems than it helps.
“Be sure to pay attention to your toes and the area in between,” says Dunn. After bathing it is important to carefully dry between toes. For problems with chronic moisture between toes or if toes are rubbing together, a thin piece of lamb’s wool threaded around the toes will prevent rubbing and allow more air into the area. Athlete’s foot should be treated with appropriate antifungal agents like Tinactin or Lotrimin. Another way to help keep toes dry and athlete’s foot at bay is to wear foam “toe separators” to bed (can be purchased at most major drug stores).
Last but not least: toenail care. Dunn explains that people with SCI are at very high risk for developing ingrown toenails, something that should be seen by a podiatrist because they can become infected and can cause autonomic dysreflexia. One of the many causes of ingrown toenails is improper clipping. “Clipping toenails is a high-risk activity and needs to be done properly,” says Dunn. “A visit with a podiatrist to learn proper nail care, or even having nail clipping done by the podiatrist, can be money well spent. Many insurances will cover this with a justification of insensate feet.” Medicare will pay for trimming, cutting, clipping or debriding of toenails by a podiatrist, osteopath, or doctor of medicine with certain “systemic” conditions, including neurological ones, that may require specialized foot care by a professional.
“For people with SCI who already cut their nails, various ways are possible. Some cut the nail straight across and some do a rounded cut. Do what works,” says Dr. Daniel McFarlane, a podiatrist affiliated with Craig Hospital. “Straight cut toenails should be a little longer; round cut should be shorter.” Take care to leave enough nail to avoid nicking the skin. WebMD.com’s advice for diabetic feet is to cut toenails after bathing when they are soft. Trim them straight across, then carefully smooth them with a file, and be careful to avoid cutting the corners of your toes.
As a routine part of “daily SCI systems management,” foot care only amounts to a few minutes a day — time well spent to avoid serious complications that could result in hospital stays.