Please Help The Shook Family Fight for Allan!
Hi. My name is Dan Gorman. My wife Charlotte and I are close family friends of Allan Shook and his beautiful family. Allan is currently battling an ultra rare and debilitating disease called Autoimmune Driven Paraneoplastic Anti-Ma2 Encephalitis which has left him unable to work or even function normally. As the sole provider for his family, this has left his wife and two beautiful daughters wondering what tomorrow will bring. His pay will be stopping next month as he is unable to return to work at this time due to this horrible disease. With an uncertain future ahead, we are asking you to please consider helping the Shook family through this crisis so they can continue to help Allan fight to recover. The following statement has been written by Tracy, Allan's wife, about theirs and Allan's struggle with this disease and his ongoing treatment.
Hello, this is Allan's wife, Tracy. Very few of you are aware of what has been going on with Allan's health over the past year. As a family, we have kept things very private in order to respect his privacy. Some of you have reached out via text, email, or phone - thank you. I apologize if I haven't been able to personally reach out to each and every one of you yet. Please know our family appreciates your continued thoughts and prayers. With Allan's blessing, I am reaching out to you to share his story.
Allan started experiencing debilitating migraines back in Feb. 2020 - ones that his migraine medicine would not touch. Along with this, came some visual issues, occasional double or blurred vision. His migraine doctor dubbed this as "the perfect storm" of migraines. In typical Allan fashion, he pushed through and continued working and ignoring these symptoms as best he could.
Over Spring of 2020 those migraines persisted, visual issues came and went, and he started developing narcoleptic-type symptoms as well. Physicians initially diagnosed him with narcolepsy and prescribed medication, however none of the medications improved the narcolepsy, instead it worsened. He was literally falling asleep while eating, in mid-conversations, while seated watching T.V. etc. He had no control over it and NO medications were helping. It was very scary not only for him but for the girls and I as well. We sought out the opinions of two additional sleep medicine doctors. One agreed it was narcolepsy. The other did not. He did a very thorough workup and informed Allan that he did not believe he had narcolepsy, but rather a very serious and undiagnosed neurological condition that was manifesting and presenting these narcoleptic symptoms.
Allan was referred to a neurologist at the main campus of the Cleveland Clinic. His appt was Summer of 2020. During this time while dealing with the perfect storm of migraines and extreme narcolepsy symptoms he began having short term memory issues, hand tremors, and balance/gait issues. All of which he had no control over. He was also experiencing very vivid visual, tactile, and auditory hallucinations. He was becoming paranoid and exhibiting increased confusion at times. In addition, he was having extreme temperature regulation issues. His core body temperatures ranged anywhere from 86 degrees - 107.2 degrees at it's highest. He would often have episodes of profuse sweating, dizziness, rapid heartbeat, high and low BP's and stuttering. We would later learn these episodes are referred to as "neurostorming."
The first neurologist he saw at the Cleveland Clinic did many many diagnostic tests, bloodwork, and exams, and yet still had not uncovered what was causing all of this that was happening to him. He sought the opinion of a colleague, a neurologist who had just recently came on staff at the Cleveland Clinic from the Mayo Clinic.
In October of 2020, Allan met with the new neurologist. More bloodwork, exams, diagnostic testing, and scans followed. On October 27, 2020, Allan was diagnosed with a very very rare disease - Autoimmune Driven Paraneoplastic Anti-Ma2 Encephalitis. We quickly learned that only 150 people in the ENTIRE WORLD have this condition. It is so rare that there are few research papers written on it and not a lot of information is known. His MRI's revealed that he had inflammation mid-line in the hypothalamic region of his brain.
In younger males, Paraneoplastic Anti-Ma 2 Encephalitis typically presents with a testicular cancer, however, to date no cancer has been found in Allan's case. If they could find a cancer that is driving the flair of these Ma2 antibodies they could treat aggressively. Unfortunately, in his case, he is continuing to be attacked by his own body.
During Allan's illness the girls and I have witnessed this disease slowly take away the person we knew. It is extremely difficult to watch someone you deeply love suffer and not be able to do absolutely anything about it.
Up to this point, doctors have completely suppressed his immune system, given him steroids both oral and IV, IVIG infusions, rituximab infusions, and plasmapheresis treatments. His immune system has not responded enough to these treatments. The antibodies are still present and attacking his body. Recently, he was given 2 doses (4 weeks apart) of Cytoxan, which is a Chemotherapy and Immunosuppressive drug. We are awaiting a follow up with his neurologist to determine next steps in his treatment.
To say that he has been through hell would be an extreme understatement. To date, he has had many inpatient doctors, 19 outpatient doctors all specializing in different parts of his care, has had 11 trips to the ER, resulting in 6 hospitalizations and 2 stays in rehab facilities, totaling 157 days and counting in the hospital.
The most recent trip to the ER was by far the scariest and worst condition we have seen him in. In the couple days leading up to April 8th, 2021, he started sleeping more and becoming less interactive with us. We kept a very watchful eye and on 4/8 he began running a higher fever (102), had a higher BP, was tachycardic, tremoring, started profusely sweating and stuttering his words. We now know this was "neurostorming." He was admitted to the MICU (Medical Intensive Care Unit) and on 4/9 began running a fever of 107.2 while neurostorming. A nurse that had been there for 20 years told me she had never had a patient have that high of a fever. During this time he was placed on the Arctic Sun to aid in cooling his core body temperature, used a paralytic drip medication to completely relax his body in order for the tremoring to stop, he was put on ventilator support, required dialysis, and had an NG tube placed. He remained on the ventilator for the next 3 weeks as they were unable to wean him off of it. At that point they placed a tracheostomy to maintain his airway. After the tracheostomy placement he was more awake but has been non-verbal. When medically able, respiratory will place the PSV valve (speaking valve) on him - we have heard mainly breath sounds and not much of an audible voice at the present time. He has been in a quadriplegic state and unable to move any of his extremities from the neck down. Neurologists are unsure if he will be able to regain function of his voice or extremities nor are they sure exactly what has caused this to happen. This disease is so rare that even the neurologists and team of physicians are not sure of what to tell us regarding what to expect and the "why's and how's" of the many questions that our family has asked.
Over Memorial Day weekend he was transferred from CLE Clinic to an L-Tach (Long-Term Acute Care Hospital) and is still currently there. He recently had a PEG procedure done (Flexible feeding tube that is placed through the abdominal wall and into the stomach). PT, OT, and Speech therapy are working with him as tolerated. His level of wakefulness, interaction, and participation fluctuates day to day. I am told the next step from the L-Tach is to a SNF (skilled nursing facility) and that may happen as early as next week.
As you can imagine this has been an unimaginable time in all of our lives. A nightmare that we keep wishing would go away. It is devastating to know the man that he is and yet see him in this condition. He is trapped in his own body - unable to communicate and unable to move. We are hoping and praying for a miracle to heal his body and bring him back home to us. I miss my husband and the girls miss their Dad.
To all of his family, friends, colleagues, co-workers, and students: He misses you all and wants nothing more than to get his life back. From the onset of this horrible disease one of his main focuses has always been, "When can I get back to work?" To those who know him, that is Allan.
Thank you for reading this lengthy update and please know that Allan appreciates each and every one of you. You have all had a positive impact in his life.
-- Tracy, Madison, and Emily Shook