Help Veteran 1st Responder James recover from GBS

Hi, I'm James and I was diagnosised with a rare disease July 17, 2023. I woke up confused thinking it was Sunday and missed work. My work called to say I missed my first client. I cancelled all my appointments, went to my doctor with flu-like symptoms around noon and came home, laid down on the couch for a nap. That's the last thing I remember.

I was brought to the ER, where they couldn't find out was wrong with me and they told my family I was dying. I was transferred to Rush hospital in Chicago. For the next two weeks I was in a coma. When I eventually came to, I was a quadriplegic only able to move my head. I was diagnosised with Guillian Barre' syndrome (GBS). I was told by my doctors that I had the rarest form of GBS, Bickerstaff GBS who told me affected 1:500,000. GBS is a rare autoimmune, neurologic, inflammatory disorder which killed off all my nerves. I was unable breathe on my own requiring a cricothyotomy, a feeding tube since I couldn't swallow or eat, I had horrible visions, and nightmares and still do sometimes. I was in four hospitals over the next four months. I had to relearn how to do every basic life function such as breathing, talking, eating/swallowing food and liquids. Learning to walk was on of the hardest most painful things I have ever had to do in my life. When my nerves were reconnecting and regenerating; it was the most painful thing I ever went through in my life. You have more nerves in your hands and feet, which still are incredibly painful to this day. My rehab will take two years. However, my rehab is not linear like a broken bone, it is progress followed by BIG steps backwards. I was hospitalized again in early December for 8 days where I received five rounds of plasma ferocious. Only 1-3% of GBS patients get GBS a second time. I was hospitalized for a third time in late January when I got my second round of IVIG. I go to therapy three days a week for three hours each day. I need home health care, and specialized testing every month. I walk with a walker or cane depending on the situation. Additionally my blood pressure oxygen saturation has been affected by GBS and can bottom out which impacts my balance, causes dizziness, and causes me to fall and injure myself further.

I haven't been able to work since mid-July and it will take some time until I am working full time. I lost half a years salary plus, have extensive medical bills, additional medical costs, and will continue to have more medical bills while being unable to work.

I'm a proud Army Veteran, and also worked as a cop and a paramedic. Currently I work as a counselor working with those with PTSD many of those are Veterans or first responders. I have gone through what little savings I had and have gotten by through the extreme generosity of family, and friends. I plan to use any donations for my many medical bills, paying back those that have helped but can't afford to help as much as they have, and for other items needed to help in my rehab. My form of GBS, suggests I could develop CIDP (Chronic Inflammatory Demyelinating Polyneuopathy). This would explain the big steps backwards further delaying my rehab. This could land me in the ICU from time to time. I have always worked in careers where I served other and put their needs ahead of mine, so asking others for support is difficult for me, but I know I need help. I appreciate you taking the time to read this and any donations I am very grateful for. Please share my story with as many others as you can.

Respectfully and with GREAT appreciation,

James