An Ounce of Prevention

Posted by Reeve Staff in Life After Paralysis on July 03, 2020 # Health

By guest blogger Sheri Denkensohn-Trott

Individuals with spinal cord injuries (SCI) have a laundry list of tasks that consume energy and time each day. For some, getting dressed, with the help of an attendant can take an hour. When you add bowel routine and shower, that time can double. Some days, this means getting up at the crack of dawn.

With everything on your daily plate, it feels even more burdensome to add regular checkups and preventative care. Energy on medical matters is devoted to immediate priorities such as ordering supplies, going to pain specialists, and urological issues, among others. Associated insurance hassles may require lengthy phone calls and oppressive paperwork. I have had days when I wanted to give up on scheduling general medical appointments because the effort involved was too great.

As hard as it is to schedule and travel to preventative appointments (and the inevitable follow-up tests), many with SCI, myself included, just want to push these to the side. But after 36 years, I have learned that time spent on prevention is time very well spent.clipboard checklist

What follows, are helpful tips that I have adopted. These keep me healthier and maintain a doable routine of juggling my multiple medical needs. This is not a “one-size-fits-all” approach and can be adjusted to meet your needs

  • Maintain a balanced and healthy diet. Stay away from sugary drinks and ensure you get enough fiber, fruits, and vegetables. To prevent pressure sores, protein levels should be high. Supplements are useful, so talk to your physician about what is best for you.
  • Exercise. As a C4 quad, I didn’t believe there was any exercise that would benefit me. After a hospitalization that resulted in my getting a trach, I started doing yoga breathing and it made my diaphragm stronger. Encouraged by this, I joined a local gym and began yoga and Zumba classes. When the instructor does something with legs, I do the motion with my arms. I still get my heart rate up and feel better.
  • Watch and act. Examine your skin daily. If you are unable to do it yourself, have your attendant do a head to toe look, focusing on areas that tend to be problematic. Catching a pressure sore, ingrown toenail, or irritated area before it flares up is crucial. Take a picture of any developing problem area and get it to your doctor. Visit if you need to. Watch your urine color and your stool output. If you think an infection is developing or impaction is happening, talk to your doctor and make sure he/she coordinates with your other providers. Coordinated care is a necessity!
  • Talk to others with SCI and ask questions. There are resources available online through a variety of organizations, including the Reeve Foundation. You are not in this alone. Peer mentors are available.
  • Don’t delay. It is common to start the day intending to make appointments, order supplies, etc., but quickly, the day is over. After several such days, you can find yourself out of supplies or worse, in need of urgent care. Keep a running list of your supplies and drugs so you can avoid emergencies.
  • Be prepared. Avoid doing the intake paperwork at your doctor’s office. Ask if your medical providers can send you necessary paperwork before an office visit. Also, prepare and routinely update an electronic list of your surgeries, medications, supplements, points of contact, and other pertinent information. Store it online and keep a hard copy with you.
  • Report accessibility barriers. Point out problematic parking, elevator buttons, intake desks, exam tables, mammogram machines, and any other point in your health care journey that is inaccessible. Many entities are not in compliance with the law or ignorant of it. They need to know when you cannot utilize resources appropriately to receive quality care. There are checklists and other resources regarding accessible healthcare to use as a guide. Speak up for all of us.

The bottom line is to be proactive in your healthcare and request help when you need it. Aging with SCI is not for sissies, so do your best to make it as easy as possible. It is worth the effort.

Sheri Denkensohn-Trott sustained a spinal cord injury in 1983 and is a C4 quadriplegic. She practiced law for the Federal government for 25 years and started her own business with her husband (who also has a disability) called Happy on Wheels, LLC. Their vision is to inspire others, with and without disabilities, to live happier lives through writing, speaking, mentoring, and consulting. Sheri is a columnist for New Mobility magazine and a regular contributor to other written publications. Additionally, she is a motivational speaker, professional storyteller, and mentors’ students and individuals of all ages. She serves on The Advisory Board of the Rockefeller College and is also a breast cancer survivor and Ambassador for the American Cancer Society. Sheri is currently writing her first book. Sheri and her husband reside in Arlington, Virginia. You can follow them on all forms of social media, and subscribe to their newsletter by accessing their website www.happyonwheels.com.