Treyvon's Journey With Transverse Myelitis

12/19/2024

06/02/2023

WEDNESDAY, May 24, 2023 (HealthDay News) -- A Dutch man with paralyzed legs can now stand and walk, thanks to a wireless brain-spine interface that responds to his thoughts by moving his legs.Gert-Jan Oskam, 40, suffered a spinal cord injury 11 years ago from a bike accident in China that left him u...

03/31/2023

Props to Treyvon (SCI) from Indiana for putting in 4 hours per day during his 2 week Intensive Program! His big focus this trip is improving core and postural strength (hence, nice and stacked tall kneeling!) and getting in some locomotor training every.single.day!!! 👣🔄👣

03/19/2023

09/26/2022

In his spare time, Treyvon loves to play Xbox. He's been working on connecting with content creators for his favorite game, Destiny, to do a fundraiser for the SRNA. One of them (Aztecross) reached out to him to get his take on some devices that are used in gaming to cheat with the guise of accessibility. Check out the YouTube video in the comments to hear Treyvon's thoughts.

09/01/2021

While your diagnosis may be rare, we at SRNA see the power in advocating for people with all rare neuroimmune disorders.

They cause similar symptoms that are treated in the same ways. There are similarities in the acute therapies to stop the attacks. There is significant overlap in the long-term care. Research on any one of these disorders benefits all these disorders. Education, support, and research are more effective by sharing experiences, and knowledge collaboratively. There is strength in numbers.

Help us help you. Donate today.

https://wearesrna.org/donate

06/05/2021

Link to Treyvon's graduation (starts now):

Please help us congratulate the Class of 2021! This ceremony includes graduates with last names starting with A-Ki.

01/30/2021

I recall that first year when we were getting trained on Neuromuscular Electrical Stimulation (NMES) with the Functional Electrical Stimulation (FES) cycle. The clinician was so precise and adamant about the placement of the electrodes. They had to be in a certain spot and away from spine. I wondered what would happen if there were too close to the spine, and they said it would be painful if it was on the bone where the spine was (ironic for someone that could not feel pain below their shoulders). So they went about training us on their strict protocol that had to be done that way because it is what was proven. Reading this article really makes me think we as a society like to "red tape" ourselves with protocols, when in actuality, all a protocol really means is something just hasn't been studied a different way. The research time just hasn't been invested to see if another way works. This article seems quite similar to the transcutaneous stim study Treyvon was in, and it certainly works. He has seen marked improvement in his back, arm/shoulder, and grip strength. We've switched his high back on his power chair to a lower back that is armpit level. He also doesn't face plant in the stander now and can activate his back muscles to hold himself up. He lifts and fills up his 64oz mug cup with ease now. His strength certainly has improved overall in his upper body. We can't trace that all directly to the TcStim trial, but I am certain it was a big catalyst. It is quite ironic to know that something that was believed to cause pain just a few years ago has actually instead demonstrated that it opens the communication pathway to get the messages through. I am quite thankful for the researchers that don't take no for an answer and that instead say let's try it.....let's try it in a clinical setting and see what happens. I am so thankful we live close to Frazier and are able to work with those "let's try it minds." My rebellious nature hates protocols and loves to adapt to what makes sense. So this year, we are going to continue to look beyond the protocols and see what new opportunities are out there. 💙

"Never be afraid to try something new, because life gets boring when you stay within the limits of what you already know." -Unknown

In a clinical trial, wearing a small stimulator on their necks helped people with quadriplegia build back movement they had lost years ago.

05/31/2020

Happy to see this device is now on the market! Treyvon has been using it almost 2 years now through research at Frazier. His pulmonary function increased from 37% to 42% after the first year of using it. It really works! 💙

02/23/2020

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NeuroHope Presents at APTA National Conference February 21, 2020/in Annoucements, General Blog Posts, News /by Chris LeeuwThe NeuroHope story was presented at the American Physical Therapy Association’s (APTA) Combined Sections Meeting in Denver, Colorado on February 14th! Dr. Stephanie A. Miller ...