Support Paul's Battle with Guillain-Barré Syndrome

Hi - I’m Paul. I never thought I would have to start a Go Fund Me, but 2024 has been a very rough year so far. Thank god for voice-to-text, or I never would have been able to write this.

Here’s the long story short version: After a series of other setbacks, I was diagnosed with a rare, serious autoimmune disease that has left me unable to work and largely unable to function. My recovery will be long and slow, and I might not fully recover. Resources have run too thin. Disability might be an option, but it could take years if I even qualify. Because of that, we’re at a point where we can’t meet our expenses even after cutting back and being frugal. We need help.

Here is the longer version with all the details:

After 10 years I lost the job I thought I would retire from. Then I poured everything I had - physically, mentally, and financially - into starting my own business. I was having successes and building momentum. Then we had some unexpected medical issues. During those challenges, our water heater burst, flooding the basement with over 70,000 gallons of water.

Then I had a routine doctor’s visit on August 23rd. He said I was in overall good health but wanted to give me a pneumonia vaccine, just in case. I said sure, why not.

About a week later, I woke up on September 1st with my feet asleep. Over the next few days, things kept getting worse. The numbness traveled up my legs. My hands went numb and started to hurt. My arms went numb. I could no longer walk normally. I couldn’t type. I couldn’t sleep. Finally, it drove me to the emergency room where they did a bevy of tests - MRIs, CT scans, bloodwork, etc.

It looked like back issues – bulging discs and such - so I made an appointment with my spine surgeon and left the ER with high hopes.

One week later, things had gotten way worse, and I was back in the ER in excruciating pain with facial paralysis added to my growing list of symptoms. I was convinced I was having a stroke. More tests and scans later, there was no sign of a stroke, and nothing to indicate that my back had gotten worse. They gave me some drugs and assured me that my spine surgeon should be able to help at my upcoming appointment. Things only got worse over the next week and a half.

At my spine doctor appointment, he reviewed all of the MRIs and CT scans with me and said:

”There is nothing that requires intervention - you don’t need surgery or anything.”

He asked me about the history of my symptoms. When I explained to him that prior to my neck surgery in 2019, it took nine months for things to get really bad, he asked me how long these problems had been going on. It was September 24th, so I did the math...

Abut three weeks.

That’s how long it had taken for everything to become worse, more painful, and more widespread than in 2019. I woke up one day with numb feet and just three weeks later I was basically unable to function.

He asked if I had been sick or gotten any vaccines recently, and I told him about the pneumonia vaccine on 8/23. He thought for a minute and said: “This sounds like Guillain-Barré syndrome. If it gets worse, or if you start having any trouble breathing, go to the ER.”

Later that night, the pain was the worst it had ever been and I started to have trouble breathing. I was an absolute mess of tears as we went off to the emergency room for the third week in a row.

After a lumbar puncture (spinal tap) and more bloodwork, the diagnosis of Guillain-Barré syndrome was confirmed.

Guillain-Barré syndrome is a rare autoimmune disorder that causes the immune system to attack the peripheral nervous system, causing numbness, pain, muscle weakness and other problems. Left untreated it can lead to paralysis and even death. There is no cure, but there are treatments. Some people recover, but there are no guarantees.

After a series of treatments and a week in the hospital transitional care unit, there were some minor improvements. Some of the numbness in my legs receded, but I still can’t feel anything below my ankles. The numbness, pain and discomfort remains in my hands and arms, but it’s more manageable. They sent me home after a week because there is only so much they can do in the hospital.

I am still in excruciating pain, and my hands and feet remain numb as bricks. I cannot walk without a cane, and even then I cannot walk long distances. I cannot stand for long periods, and I cannot sit for long periods. I wear out very easily and am constantly fatigued, requiring way more sleep than is typical. I still have difficulty sleeping though. I have lost the majority of my fine motor skills and dexterity. I have very limited grip strength, and there is significant weakness in my arm and leg muscles. I need a lot of help. Each day, the majority of my energy goes into just existing, and the fatigue is constant. There’s no way to tell how long my recovery might take. It could be months or years, and there’s a chance I’ll never fully recover.

I can’t work because I can’t stand or sit or type or talk for long enough to accomplish anything, and the business I had been working so hard to build has essentially crumbled.

That’s why I’ve created this fundraiser. As much as I would like to believe that we can shoulder this on our own, we cannot. Our resources have run very thin. Everyone asks what they can do to help, and right now, this is the help we need.

The money will be used in several ways. I have good insurance, but there will be things it does not cover. I've already got a ton of follow up appointments, and I’ll need occupational and physical therapy eventually. The mental strain will require therapy too, but my therapist doesn’t take my insurance. I will be in and out of a lot of medical professionals' offices in the coming months and years. We don't know what we'll end up having to pay for out of pocket, so covering any direct medical expenses will be the biggest priority.

Covering other, related expenses like assistive equipment, mobility aids, etc. will be the next priority.

We’ll use some of the money to help cover everyday living expenses. My inability to work puts us in a serious financial strain. I might qualify for disability, but that takes months or sometimes years to work through the system. We don’t have that kind of time. Even cutting expenses and being extremely frugal only goes so far.

Anything helps and will be so very greatly appreciated. Thank you in advance for helping. I will post regular updates, and if you want to reach out, please do.