“I remember being in the hospital and being terrified,” shares Janne Kouri, a quadriplegic from a diving accident. “Having so many questions and no answers.” In order to help others in that situation, the basic guide was born. “There is hope, you’re going to go on to live a wonderful life,” he shares. “Right now it seems like a super dark place, but trust me, if you work hard, stay focused and stay positive, you’re going to have an amazing life.” Watch the basic guide for new spinal cord injuries to get insights from Janne:
“The injury is not the end of you’re life, it’s just a bump in the road."
- Don’t listen to naysayers.
- Stay positive!
- Knowledge is power. Be educated about your injury.
- Don’t take no for an answer.
Check over your insurance bills, demand the services you need, and ask for help. You’re not alone in the struggle.
“Nurses and case managers are now your best friends. Give them chocolates, give them flowers, whatever you need to do.”
Tips to manage and what to be aware of with your new body:
1. Pressure sores
- Pressure sores can arise when your skin is irritated, which can even come from a wrinkle in your sheet or clothing.
- Make sure there are no wrinkles in your clothing or your sheets.
- Change your bedding and clothing frequently
- Do pressure releases (even if you’re in the hospital, get your nurses to help or check out these tips)
- Get a good mattress and cushion
- Check your skin everyday and keep it dry
- Not everyone gets them, but some do
- Be weary of addictive qualities of some muscle relaxers and talk to your doctor about your situation
3. Autonomic Dysreflexia
- Many medical professionals don’t know about it so it’s imperative to be informed to communicate with your doctor
- Your body is reacting when something is happening to your body that you can’t feel, this could even be from an ingrown toenail to something more serious
- The symptoms include high blood pressure, chills, sweats, etc.
- Alert a nurse or doctor immediately if you are feeling those symptoms
- Try to find the source of discomfort and remove it, remove tight clothing or accessories
“Getting healthy is your primary focus, but you do want to start rehab as soon as possible, even when you’re in the hospital. Your muscles start atrophying after one day.”
He recommends that you demand to get physical and occupational therapy while still in the hospital, even if you’re lying in your bed. “You want to make sure you get a good nutrition plan,” he shares, so see if there’s a nutritionist on staff. “Drink lots and lots of water, it’s so vital to your overall health and wellness.”
The commitment to rehabilitation
Jump to 8:58 to learn more about rehab. Janne stands by progressive rehab, and has information on centers that deliver those types of services. Although every case is different, these types of therapy focus on keeping the entire body healthy, which is beneficial even if there’s no recovery in movement. “This is not a sprint, it’s a marathon,” he shares. “It can be very discouraging at some points in times, but you have to take pride in all the small accomplishments.” You can always do what is prescribed, but Janne recommends going beyond to do more to work out on your own or with your family (of course with your doctor’s stamp of approval).
Picking a wheelchair is also a bit step that requires a lot of research on your part to ensure you get the best wheelchair. Also, don’t be afraid to do what you need to do to make your room feel comfortable to lessen stress of the new environment. It’s important to have a good atmosphere, so talk to your nurses about what you can do. Talk to your nurses and doctors to learn as much as you can about best practices for bladder and bowel management while you have them as resources and understand your risks for urinary tract infections and bladder stones. It’s also important to talk to people at rehab to understand how to prepare your home for your arrival after your discharged including, but not limited to, ramps, doorways, your bed, and any potential safety precautions.
“Learn to laugh and have fun again. The situation you’re in is crazy, absurd and it’s very traumatic, but you are still you. Give yourself one thing to look forward to after your rehab.”
Transitioning home after rehab
Jump to 12:29 to talk about transitioning home after rehab. If you need nursing care, it can be challenging, but Janne has tips for finding caregivers, including ways to save money. “Now that you’re out of rehab doesn’t mean that rehab ends,” Janne says. “It’s so important to get moving and exercise.” Regardless of your degree of movement, there are ways you can keep your body healthy, so talk to your doctor about how you can do it. Also consider adapted yoga and meditation, a great way to find your inner zen. If sports are your thing, check out how sports are adapted. You can find ways to pursue your passions or discover new ones. Also, if you want to drive, check out local regulations and opportunities for adapted driving. Otherwise, be sure to check out the accessibility of local public transport.
The greatest headache of all is perhaps the financial burden of spinal cord injury. Janne recommends some fundraising platforms to help with your financial needs. Also, be sure to check out organizations that offer grants to individuals to support people who are struggling with the financial strain.
“You have an amazing life that awaits, so get out there.”
Share this post with someone who has just begun their journey with a spinal cord injury.