This is Jim Weber. A survivor of Guillain-Barre Syndrome.
Jim introduced himself and his family to me at the inaugural Animal Run in 2018. He told me he would do his best to run Animal Run for as long as it exists. So, like what naturally happens in the running community, we became instant friends. True to his word, he ran it again in 2019 as a canicross team. And then, 2020 happened. This is the incredible email I got from him.
Boy, this has been some year, hasn’t it? The craziness actually started earlier for me, though. About a month after I ran in your 10k Animal Run in July I started coming down with some strange symptoms.
On August 12, 2019 I went out for a run after work and noticed my fingers and toes were tingling. I had to stop my run at only 5 miles because my calves were cramping up (I had been running 40-50 miles a week at this time, so this calf cramping was not something normal.) I took a couple days off to recover, but I was now feeling the finger and toe tingling all the time. I tried running again and had to stop at 4 miles due to my calves.
I went to see a doctor the next week and he ran a bunch of tests that came up negative. I started doing my own research and one thing that kept popping up was Guillain-Barre Syndrome or GBS. But, one of the main symptoms of GBS is severe weakness and for some reason I didn’t think that my calf cramping was weakness, so I didn’t bring it up. But, over the second weekend since the symptoms started I realized I couldn’t jump at all and it was due to muscle weakness. That’s when I got scared….
I saw the doctor again on August 27th and explained the muscle weakness as another symptom and he immediately left the room to call a neurologist. He came back and did the reflex test, which I failed miserably. He said he thought I might have GBS and told me to go to the emergency room immediately for a spinal tap (they check the protein levels within your spinal fluid as further confirmation of GBS). They found it was high and immediately admitted me. I was started on a 4-day treatment of IVIG (purified plasma with other people’s antibodies) I started to get worse and could barely walk at all, but after the fourth treatment I seemed to start improving and I was released.
At this point, let me explain a little about GBS; it’s a rare (1 out of 100,000) auto-immune disease that comes on usually after a viral infection and your antibodies defeat the virus but then for some reason they come to the conclusion that they must attack your nerves’ myelin sheath, which is like the insulation on a wire. When that myelin sheath gets removed the signals don’t make it to where they are supposed to go. Everyone goes through GBS differently, but 75% of the cases result in losing the ability to walk and a third lose the ability to breathe on their own and need to be on a ventilator. People usually improve, but it is a long, slow process. As a rule, you can degrade for up to 7-8 weeks and then plateau and eventually start improving.
IVIG doesn’t fix things, but it helps to slow down the degradation and keeps you from becoming totally paralyzed or needing a ventilator.
Since we caught it relatively early we were all very optimistic, especially since I seemed to improve with the IVIG. I literally thought I’d be able to finish the Brazen Racing Ultra Half Marathon Trail running series. I had two more races scheduled and I was on pace to finish in the top 10 of all males. That optimism would be short-lived unfortunately.
This story is probably too long as it is, but quickly, a month later I was back in the hospital getting another round of IVIG because I was getting weaker daily. The next round didn’t seem to do much and this was at about week 6-7 since first getting symptoms, so I was supposed to start plateauing soon anyways.
By October I couldn’t leave my house without a walker.
This is where I could not continue reading. I was too shocked and emotional. Jim and Jordy came in 3rd place in the 2018 5k Canicross, then 2nd place in the 2019 10k Canicross. Jim is a VERY strong guy. I started reading again the next day.
Jim in 2018
Jim in 2019
I tried to be independent and didn’t use the walker much in my house, but I fell a lot. I started using my walker to walk around my half mile neighborhood loop and keeping track of my times. The first time I did it, it took me over 27 minutes to complete the half mile and I was exhausted. As some background, I had been shooting at breaking 20 minutes in the 5K for the last year (6:27/ mile) and I kept coming up just short (20:12, 20:11, 20:04), but breaking 20 was always on my mind. Well, soon it became a goal to break 20 in my half mile loop with my walker.
Dang, this is way too long, but starting in January of this year I really started to make noticeable improvements. I started “running” again in March after the shelter in place order. It was a 13 minute/mile pace and I could only go a half mile, but I was running without a walker! I kept at it everyday for about 40 days and kept improving.
In June I was feeling good and ran 4.7 miles at about a 9 min/mile pace on one of my normal courses. It had some extreme elevation change at about the 3.7 mile mark and coming down the hill I seriously hurt the ligaments in my left knee and I haven’t been able to run since. I think it’s about better and hoping I can start running again in September.
Since this is so long, I don’t know if you’ll get here, but I do want to register for the 5K virtual run with an 11-pound dog. I think there’ll be a lot of walking between the two of us (he’s a 14-year old chihuahua).
It seems so strange now because I almost feel “normal,” but during the months of Oct, Nov and Dec I honestly wondered if I would ever get better.
In our community, we have a saying that GBS stands for Getting Better Slowly, and it is so true. My feet and mid-back are still numb and my calves are a full inch smaller than they were, but no one would be able to tell by looking at me that just this last January I couldn’t leave my house without a walker.
Hopefully we’ll get to meet again in person and give an actual hug. Man, what a year, huh?
Jim, thank you so much for sharing your inspiring story of staying strong in the face of a debilitating mystery disease. And yes, I am also looking forward to seeing you crush the next in-person canicross event and getting a congratulatory hug, when we can all go back to hugging again. 🙂
For those interested, here is some info about GBS from the Mayo Clinic.
Guillain-Barre (gee-YAH-buh-RAY) syndrome is a rare disorder in which your body’s immune system attacks your nerves. Weakness and tingling in your extremities are usually the first symptoms.
These sensations can quickly spread, eventually paralyzing your whole body. In its most severe form Guillain-Barre syndrome is a medical emergency. Most people with the condition must be hospitalized to receive treatment.
The exact cause of Guillain-Barre syndrome is unknown. But two-thirds of patients report symptoms of an infection in the six weeks preceding. These include respiratory or a gastrointestinal infection or Zika virus.
There’s no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. Although most people recover from Guillain-Barre syndrome, the mortality rate is 4% to 7%. Between 60-80% of people are able to walk at six months. Patients may experience lingering effects from it, such as weakness, numbness or fatigue.