About Joey McAllister

In early 2024, my middle brother, Joey, was diagnosed with a rare neurological autoimmune disease, Autoimmune Encephalitis (AE). Autoimmune encephalitis is a rare disease that occurs when the body's immune system (via antibodies) mistakenly attacks healthy brain cells and brain tissue(s), causing inflammation. The swelling and inflammation of Joey's brain resulted in an Acquired Brain Injury (ABI). The cause of his infection is unknown and may never be known. The specific antibodies that Joey's body began to produce are also unknown / yet-to-be-discovered by science.

In late 2023, Joey started experiencing memory lapses (forgetting where he parked his car, where he was supposed to be for work the next day, and locations of frequently visited local establishments, etc.). Additionally, over the course of months, he lost about 40-pounds and developed extreme claustrophobia - a difficult condition for someone who builds elevators for a living.

He began to lose proper balance, the ability to climb stairs normally, his speech was beginning to slur, and his short-term memory began to deteriorate. He was admitted to Northwestern University Hospital Neurology (Chicago) where he spent about 2-weeks. While at Northwestern, he was given a series of strong steroids and several rounds of intravenous immunoglobulin (IVIG).

After being released from Northwestern University in late January, he was sent home but later readmitted to Northwestern University Neurology after his baseline began to regress quickly. After this stint at Northwestern University Hospital, he was directly admitted to Shirley Ryan AbilityLab for several weeks of acute inpatient rehab.

Joey is currently back at home, where he requires 24-hour care. He attends Shirley Ryan DayRehab 3 days/week, where he is working really hard re-learning how to walk, how to speak clearly, how to write, basic problem-solving skills, refining motor skills, etc. Currently, he is walker-dependent and his house is equipped with new handrails and wheelchair ramps. He can shower, feed himself and use the restroom on his own, but he is unable to perform any "basic" day-to-day tasks due to the damage on his Frontal and Temporal lobes. He is not bedridden but he is, however, quite comfortable and content in his recliner until it's time for his "homework", which consists of Sondra, his wife, walking laps around the living room and kitchen, puzzles, peg puzzles, eye therapy homework, crosswords, hand strengthing putty and squeezing grips, breathing exercises, light weights, worksheets provided by his therapists and practicing his handwriting.

If you've reached out to Joey at any point this year and have not heard back, it is most likely that he forgot to get back to you. His short-term memory has been incredibly impacted. He will remember who you are but it seems like memories that were created over the past 8-10 months fall through the cracks. He sometimes remembers who visited him recently but cannot usually recall if it was today, yesterday or last week. Things like asking him what he had for breakfast, lunch or dinner are usually inaccurate, too. He experiences a fair amount of just general confusion. Conversationally, he answers questions but does not follow-up with his own questions or expand on the topic. He favors one-word responses. He is not using his phone much at all and part of this disease is a lack of initiation (executive function), so he does not reach out to anyone on his own accord.

It is becoming more clear to all of those around him that his recovery is not a matter of months but, instead, probably a matter of years. Typically, Autoimmune Encephalitis is "cured" within 6-8 months but that does not appear to be his trajectory as we approach month 8.

It is highly unlikely that Joey would want any donations or accept "something-for-nothing", so this website seemed like a happy medium where funds could be raised while providing a benefit / service to the end user (you). Shopping online is something we’re accustomed to these days and by simply starting your shopping at this website can benefit the Joey we all know and love.

You don't have to purchase the items that are listed on this website, but you simply need to begin your Amazon shopping using a link from this website and a portion of your purchase (of any items you buy on Amazon after clicking a link) will make it to him in the form of a sales percentage/commission.

Throughout the next several months, we'll be better able to assess Joey's progress and measure milestones as we take it a step at a time to determine the path ahead.

We all love Joey and are his champions along this long road. Like everything, it's one day at a time with an optimistic heart.

https://www.for-joey.com/