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Jun. 12, 2020

TOPIC: Featured News, Patients & Members, Patient Stories

Rare Reflections: Jacob’s Story

Posted by Laura Mullen

I was diagnosed with toxic acute progressive leukoencephalopathy, a rare brain disease that took me from a high functioning and able-bodied individual to locked in syndrome, in six months. This story began on May 24, 2017 at UMass Memorial Hospital in Worcester Massachusetts. I went to the emergency department with stroke-like symptoms. Life was never the same.

On May 25, a team of doctors told me that this is a progressive disease, meaning it would only get worse. They told me I would decline rapidly and most likely die within six months. Within one month I lost most of my abilities and shortly thereafter, I could no longer eat or drink. My speech withered away until I was nonverbal. Six months later I was in a pseudo-coma and locked in. Doctors thought I was disconnected from all reality, but little did they know I was conscious and cognitively intact. I could hear everything. It was sheer terror! I was put on home care hospice and my death seemed inevitable. After six months of not dying I timed out of hospice. I was lucky that I had a great team of doctors and providers at Massachusetts General Hospital that brought me back into the hospital. In July 2018 I began to miraculously be able to blink and signal to the caregivers that I could hear them. The joy I felt was indescribable. I thought that just maybe I would not be trapped in my body for eternity! I started to be able to communicate with my eyes and my tongue; blink for no, stick out my tongue for yes. I used an AEIOU board. It was tedious but it was a game-changer. I graduated to a low tech communication board known as the Megabee. By 2019, slowly, I started to speak. Providers use words such as “flabbergasted“ and “remarkable“ when describing my case and my progress.

They do not know much about toxic acute progressive leukoencephalopathy, and the little they do know shows that what I am doing is impossible. I am the only documented case of recovery from stage four of this disease. There have been survivors but there has never been a case quite like mine. I have many complex health issues that I am slowly overcoming, such as chronic pain, contracture, spasm, ataxia, autonomic dysfunction, diaphoresis, stiff body syndrome, honestly the list can go on forever but I will overcome all of this. I am in the initial stages of relearning how to walk. I have no doubt that I will get there. I have already come this far and I have done the impossible. There is no reason I will not continue to improve. Lastly, most of my major medical issues are behind me now. It’s all about physical recovery. The future will be bright for me, thankfully. My new life‘s mission is to help others in similar situations and provide motivation and assistance to patients and families. I have created a video blog on a YouTube channel documenting my recovery. Feel free to check it out. It’s Jacob Haendel’s Recovery Channel. Feel free to contact me about anything!

I want to share my entire story to show people that with willpower and determination anything is possible. Part of the reason I have been successful is that I never took no for an answer. When someone would say he will never talk again. I found that to be unacceptable and I pushed myself even harder to make it happen. I hope that others will be impacted and motivated to make themselves better and push themselves even harder than they thought possible. If you watch some of my YouTube videos you will see that I use humor, in not so funny situations. A positive mindset and humorous attitude will help a great deal when one experiences something like this.