Rise Again wants to help families impacted by spinal cord injuries by offering support. There are many organizations available that can lend a hand.
Therapy & Alternative Options
Tips from the Brown family who started Rise Again:
Our journey has brought us to people and places we would have never even thought about a few years ago. You have to find what works the best for you and seek out alternatives when necessary. Look for similar programs in your area.
Physical Therapy & Occupational Therapy
Alex participates in outpatient therapy at the Frazier Institute which is part of the University of Louisville Kosair Charities Center for Pediatric NeuroRecovery. “An activity-based therapy is a physical rehabilitation therapy that’s purpose is to “activate” or “turn on” the nerves and muscles affected by a neurological impairment.” They primarily focus on locomotor therapy for 1 hour and 30 minutes over ground. Currently this is the only NeuroRecoveryNetwork facility for pediatrics. Typically you would go for an evaluation and plan for 20/40/60 consecutive sessions. There is also an adult section as well both offering therapy and research for patients. You can find out more at https://victoryoverparalysis.org/
Alex’s therapists at home in the Pittsburgh area are so receptive to learning more and it will be a collaborative effort. You have to create the program that will achieve your goals. The typical protocol here may not be appropriate for you.
In Pittsburgh pediatrics and adolescents can participate in locomotor training.
- Children’s Hospital of Pittsburgh UPMC http://www.chp.edu/our-services/physical-therapy Wexford Pine Center and South Bridgeville
- The Children’s Institute—Squirrel Hill www.amazingkids.org
Aqua Therapy can be tailored to your goals. Locally in Pittsburgh there are a few places to look into.
- Wellness Pavilion–https://www.ahn.org/locations/healthwellness-pavilion
- UPMC Lemieux Sports Complex–http://upmclemieuxsportscomplex.com/
- The Children’s Institute–Squirrel Hill http://www.amazingkids.org
In researching spinal cord injuries, acupuncture kept coming up as an option. We watched the documentary 9000 Needles. Finding an acupuncturist isn’t easy. We are so fortunate to have found one in our area. There are many benefits to acupuncture including improving your immune system. Our doctor is so good about adding in the appropriate supplements, testing and nutritional counseling, too.
We were looking at optimizing Alex’s therapy buy fueling it from within. Our decision was to have our family go to a functional medicine doctor. We went to Dr. Conan Shaw in Seven Fields who works with a variety of conditions looking at the cause and not just symptoms. Alex is on an anti-inflammatory diet and supplements to promote neuro recovery. http://www.pittsburghnutritioncounseling.com/ There is also a functional medicine team in Cleveland, OH. http://my.clevelandclinic.org/services/center-for-functional-medicine
Alex has grown in a short period of time and we have seen his muscles get tighter in his hamstrings. It has made it increasingly hard for Alex to straighten his legs himself. We decided to try massage. We have been learning it isn’t just his hamstrings that are tight. It starts at his neck and back. Alex has a ways to go with getting his overworked muscles to relax.
Mighty Penguins-Cranberry Twp., PA http://www.penguinssledhockey.org/
Miracle League of Southwestern PA
Rugby, Shark, Basketball—Wheelchair Sports Clinics
The Hope Network—The Children’s Institute Squirrel Hill, PA
Bring your friends plenty of wheelchairs so you can have fun together! The Hope Network also can assist in help in any other sport you have interest in including track and field.
Performances, Clinics, Lessons—Cleveland, OH
Wheelchair Tennis—Louisville, KY
University of Louisville Meg Peavy
Apply for a grant and get riding on a handcycle!
Enjoy racing with your handcycle at the Achilles Foundation http://www.achillespghrace.com/ race. Now the Pittsburgh Marathon allows handcyclists in the 5K and full marathon. You can also participate in the 6.6K Lemieux Foundation fall race.
Disabled Sports USA http://www.disabledsportsusa.org/
The E-Team is designed to support and empower to young emerging athletes with a disability training competitively in Summer and Winter Paralympic Sports.
Supplies–Items that might help out
- Restorative Therapies FES Cycle http://www.restorative-therapies.com/
- Cath bag to use to transport supplies on the go. http://www.landsend.com/shop/search?Ntt=cinch+sack
- Specialized Seating http://www.specialtomato.com/
- Accessories for Wheelchair http://www.sportaid.com/home.php
- Fun Accessories http://www.pimpmychair.com/ http://www.universaldesignstyle.com/personalize-your-wheelchair-with-coolhubcaps/
- Underwear for kids https://www.goodnites.com/our-products/goodnites-trufit/
- Ice Vest (recommended if there are problems with being able to sweat and cool your body) http://www.coolvest.com