Welcome to Mick’s CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Many of you may know that Mick has been battling the aggressive onset of a devastating health imbalance. There’s no way to quickly summarize his story, but I’ll try my best with still covering enough detail to answer most questions.
This past June, Mick started noticing some tingling in his feet, and throughout the month it gradually progressed to his hands. He then noticed his feet making a different sound as he was walking (hindsight is that this was the beginning of his “foot-drop”). He went to his General Practitioner in July, who was at a loss with his symptoms. They proceeded with lab testing for West Nile Virus and Lyme Disease (both came back negative). By the end of July he was experiencing excessive numbness in his feet and his hands were hypersensitive. He visited the ER on 7/31 and was diagnosed with Polyneuropathy. He was then referred to a Neurologist.
August 12th, Mick officially retired. That following week he had foot-drop, though it hadn’t been diagnosed yet. That same week he fell down a few times. August 21st was the last day that he was able to leave the house and walk very far (after returning from walking their dog). Shortly after, he started needing the assistance of a cane to get around. By Labor Day Weekend, he was using a walker and even then, still unsteady.
9/7 he went to his neurologist in Council Bluffs for an EMG test, then a Spinal Tap a few days later. A week later, he then went to stay at Salem Lutheran Homes in Elk Horn, IA with instructions for Occupational/Physical Therapy. The neurologist a few days later called and stated that he wanted a second opinion. Mick was then referred to a different neurologist at University of Nebraska Medical Center. By this time, Mick was in a wheelchair with close-to-no feeling in his legs. Unexpectedly, they immediately admitted him and the next day he was already interviewing with a new Neuro team. After another EMG, bed-side spinal tap, and a CT, they had come up with a projected treatment plan that was centered around IVIG treatments (intravenous immunoglobulin therapy).
After several consecutive daily IVIG treatments, they opted to administer the treatment once a week ongoing and then he was admitted to Madonna acute Rehabilitation Facility. Over the next 10 days, there was a lot of inconsistency with how Mick felt (going back and forth between feeling stronger then weaker). He was sent back to UNMC for 3 days, then back to Madonna again. The next few weeks Mick’s health progressively declined. His last 2 days there, he couldn’t move his arms/hands or legs/feet at all and his airway and ability to swallow became compromised.
The end of October or beginning of November (dates 🥴), Mick was admitted again to UNMC where they quickly decided on a different course of treatment. They started PLEX treatments, which stands for Plasma Exchange. Every other day for the next few weeks, 70% of Mick’s plasma was taken out and then replaced with an “artificial” plasma. 7 treatments in 14 days, and now recently (as of 11/28), they’ve scaled back to 2 treatments a week for the next 2 months, then 1 treatment a week for the 3rd month.
While Mick has improved at this point, he’s still feeling the same “twinges” that he was experiencing in the beginning. Meaning there are still antibodies attacking his nervous system somewhere. He’s now able to move his arms (hopefully hands/fingers next) and he’s able to move his legs, but still has no feeling from his knees down to his feet. He’s taking each day as it comes right now!
Diagnosis: Through process of elimination, Mick was finally given a diagnosis called “Chronic Inflammatory Demyelinating Polyneuropathy. He tested negative for ALS, MS, Parkinson’s, brain tumor, and all the things.
“Why did this happen?” All we know is that when your immune system is suppressed, your body creates antibodies and sometimes those antibodies attack healthy nerves. We don’t know why. In Mick’s case, antibodies are attacking his “peripheral nervous system”, specifically the protective sheath that surrounds his nerves. CIDP is a sister or cousin to MS, only with MS it’s the central nervous system and brain being attacked. What we’re hoping to accomplish with the PLEX treatments and the continuous filtering of his plasma, is that it’ll eventually result in all of the antibodies that are still currently attacking, being filtered out. He currently has a port above his heart to assist in administering the treatments, much similar to dialysis and chemotherapy.
“Will Mick regain mobility”? We’re very optimistic, as is his neurologist! As I mentioned earlier, he’s made wonderful progress just in the last 2 weeks with being able to move his arms and legs from hips to knees. Mick has lost a substantial amount of weight due to muscle loss, however we expect he’ll gain much back once he’s back in rehabilitation and being more active!
“Does Mick have his cognitive abilities”? Yes! Thankfully his cognitive function hasn’t been affected. He’s still giving the staff a hard time and watching the Hawkeyes kick ass weekly!!
We’ll continue to post a few times a week so you may follow his progress. There’s no current timeline as for when Mick will be able to return home. In the meantime, we ask you to refrain from texting or calling him on his mobile. Hearing his phone notify him of calls or texts has created much anxiety since he’s currently unable to pick it up to look at it/or answer it. Thankfully the staff there have been wonderful about dialing up Kathy and putting them on speaker so they can chat a few times a day:)
We will post an update when he regains his ability pick up/hold objects though. Until then, PLEASE leave him a message! He can use all the uplifting words and prayers anyone has to offer. Kathy will read those to him weekly!
As of now, we’ve decided against starting a “go-fund-me”, however if you feel compelled to help out with expenses, you may do so by using Venmo. User name “ @Cassandra-Hohl “, then write something in the memo showing that it’s for Mick’s health journey.
