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COVID-19 Worsened Ron Lissak’s Neuropathy but Strengthened his Family

Ron Lissak, FPN Board member, was interviewed by Brain & Life magazine for their most recent issue (June/July 2020) on his experience with COVID-19 and peripheral neuropathy.

Here is the article as it appeared in Brain & Life June/July, 2020

 

About 11 years ago, I was diagnosed with peripheral neuropathy.  As a result, I have numbness in my feet, calves, and hands, which gets worse at night.

Until I was infected with the coronavirus in March, my peripheral neuropathy was more annoying than painful.  After I got sick, it went into overdrive.  I had much more pain in my hands and feet, and my balance was affected.

My COVID-19 symptoms were exhaustion, chest pain, diarrhea, terrible headaches, and loss of smell.

During the second day of symptoms, including chest pain, I went to the emergency department at Southwestern Vermont Medical Center to make sure I wasn’t infected with COVID-19 or having a heart attack.  Over five hours, I had a cardiogram, a cardiac enzyme test, and a COVID-19 nasopharyngeal swab.  Even though my test came back negative.  Then, a week later, my neuropathy got much worse, and I went back to the hospital and was there for eight hours.  Doctors were concerned about inflammation of my nervous system, and they increased the dosage of my neuropathy medication.  I also had a blood test for COVID-19, but again it came back negative.  One doctor said that they have no idea how the coronavirus works- that its going to take 10 years to understand all its effects.

The emergency department experience was strange.  My family dropped me off and couldn’t come in.  I didn’t know if I would see them again.  I was alone in a room.  I was petrified, I had no idea what the doctors were going to find and could only remember the scary stories about how the virus affects the body and how fast it can change.  I was lucky that I didn’t have any lung issues and didn’t have to be on a ventilator.  Between the pounding headache, exhaustion, diarrhea, lack of appetite, and no sense of smell, I felt like I was going crazy.

Once my symptoms subsided and I was released from the emergency department, I remained in quarantine for 20 days.  The only people I saw were my doctors via telemedicine.  My wife and sons would leave food outside the guest bedroom and knock.  I was too exhausted to do anything.  IF I worked an hour a day, that was a lot (I’m an executive for a company that makes radioisotopes for PET scans).  I watched television shows twice because I would fall asleep in the middle of them.  If I walked to bathroom, I’d have to take a nap afterward.

I am better now but still easily fatigued.  And my peripheral neuropathy is much worse.  I had to increase my medications substantially- I take about five pills a day- but I’m working with my doctor to reduce the number again.  I’ve slowly started exercising more, doing Pilates at home two or three days a week.  By 8:30 p.m., I’m ready for bed, which is wen the numbness and pins-and-needles sensations happen more frequently.  My bout with COVID-19 is not finished by any means, but its been wonderful to be home with my wife and sons.

We were a true family unit before I got infected, and this experience has only strengthened it.

As told to James K Williamson at Brain & Life.  The original article can be found at: https://www.brainandlife.org/articles/a-reader-with-neuropathy-details-his-experience-with-covid-19/ [1]