Aaron Oyster

Help Aaron regain his mobility & independence

My name is Aaron Oyster. I am a survivor of 2 TBIs (traumatic Brain Injuries). I am hoping to get support for a new kind of treatment: the BioSleeves from Axiobionics. This promising technology has the chance to re-educate my muscles and brain to make my life easier, pain-free, and more fulfilling.

In 1985, when I was only 5, I first started showing signs of my first TBI, a malignant pilocytic astrocytoma, one of the most common childhood brain tumors. My tumor wasn’t removed until October 1987 at Children’s Hospital Phoenix, AZ (after undergoing radiation to reduce its size after its growth had damaged the right side of my brain), because of an earlier misdiagnosis which allowed the tumor time to grow.

I had seizures before and even after the tumor’s removal, I continued having hundreds of different kinds of seizures (anywhere from petite mals to grand mals, ones that would induce catatonia where I’d either be totally unresponsive or I’d respond like I was in a totally different reality). Over the following 20+ years, 17 of the 19 seizure drugs were tried to control my seizures (up to toxic levels) as well as other treatments, such as a Vagus nerve stimulator but to no lasting effect. My seizures posed a serious threat as I have almost fell on the range of our stove, have fallen down stairs, been thrown to the ground numerous times, & was nearly pinned in traffic after losing my balance off the sidewalk between the severity of my seizure and the weight of my backpack.

When I was 28, my doctors told me that if I kept having seizures I wouldn’t live past 30. So I resigned myself to agree to neurosurgery which would be my 2nd TBI (after telling the neurosurgeon, “take out what you have to, but salvage what you can”) & undergoing an intercranial EEG to determine the origin of my seizures, a partial hemispherectomy (removal of part of my right Frontal lobe, all of the right Temporal lobe, & isolation of the Occipital lobe) was performed all in an attempt to stop my seizures. This procedure turned me into a total hemiplegic (paralysis on one side of the spine, left in my case since the right side was damaged further by its partial removal).

However, after 15 years of dogged pursuit of conventional Physical & Occupational Therapy, I can walk (at least somewhat normally with an AFO (ankle foot orthosis) and sometimes a cane, as well as bathe & dress myself, though I have no fine dexterity in my left hand & spasticity (the muscle’s refusal to stretch) most everywhere, yet most noticeably in my arm and my ankle, causing the hand to be functionally useless without my gripping aid (which helps me hold onto rod-like objects), the elbow to involuntarily flex in an abnormal synergy pattern when trying to raise my arm overhead & causing my ankle to involuntarily point downward (plantarflexion), as well as causing the toes to curl. Bearing my weight on that is painful and involuntary plantarflexion causes obvious balance issues.

Since my body has pretty severe levels of spasticity, this limits me from achieving a fully functional degree of rehabilitation and performing chores & food preparation (cooking not only being a necessity, but also something I enjoy doing) are two of the most challenging tasks for me due to my paralysis issues. What movement I do have is noticeably ad-libbed & improvised due to my spasticity.

High dosages of Botox are periodically injected into my forearm & ankle muscles to temporarily alleviate spastic reactions, but are losing their efficacy, and we can’t keep increasing the dosage. Which is why I sought out a different kind of treatment: BioSleeves from Axiobionics – because while much in this world is ADA-friendly, you can’t do everything with only one functional arm/hand, nor can you walk unassisted without dorsiflexion of the ankle (pulling the foot up towards the Tibia, your shin bone). The BioSleeves will re-educate the muscles in my shoulder, arm, hand, & calf so that new neural pathways can be established. Taking advantage of the neuroplasticity that the BioSleves enhance, I hope to encourage the reorganization of my brain’s network that connects to my muscles (thus, facilitating mobility)/improving ROM, as well as increasing bloodflow, & reducing spasticity and spasms (in my case, my seizures).

I am highly intelligent and very active (graduating High School with Honors & exercising at home or the gym nearly every day). I can no longer run as I used to in my youth, but I have a quixotic interest in Kung fu (particularly tai chi, but also Shaolin) and putting on as much muscle mass as I can since much of it has atrophied due to my inability to use the muscles as well as playing Magic The Gathering and reading. Due to the nightmare I’ve been through, I lack some physical mobility, & would just like to live a moderately successful life where I can contribute to society, provide a living for myself, & enjoy what’s left of it (I am now nearly 43) to the fullest extent possible (start a career, have a family of my own, etc.).

My insurance is very good, yet it can’t cover things like the BioSleeves or attending a stroke boot camp out in Charleston, SC which is why I need the community’s help. I am often asking how I can help those around me. Many think my obsession with regaining my mobility is a borderline OCD, yet I refuse to believe that this is all there is for me in this life & it surely doesn’t look like the prosperous future alluded to in Jeremiah 29:11, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future”. Friends and family have often told me that I am an inspiration to others. I hope my determination and compassion inspires you to give from your hearts as now I need your help by giving to my cause on Help Hope Live

Family and friends of Aaron Oyster are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.

Aaron has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!