My PN Story by Scott Hobbs --

I don’t know when it started. All that I know is that I’ve been very fatigued since 1997. I walked fine and was very active, though I was very overweight.

During 1997, I was playing volleyball with a group of friends. I ran to hit the ball and succeeded but found myself unable to stop running. I just rolled on the ground got stopped, then got up again. Everyone was looking at me like I was weird. I kept playing but the same thing kept happening to me. This was the first time I noticed something was wrong, I was only 30 years old at the time.

I also began to notice that my shoes would wear out in a weird way. The heels on the inside of my feet would wear down to nothing while the outside was fine. I never felt funny when walking and nobody said anything to me about it either.

I moved to Metro Washington DC from Metro Detroit that winter and had no problems loading and unloading the moving truck. I worked hard through 1998 and never noticed any difficulty. I wasn’t playing volleyball so it wasn’t noticeable, I guess.

In January 1999, I got a second job driving an auto parts truck. I was having difficulty with balance and walking like I was drunk. I had to quit that job after only one week. I still had my main job as Pastor for a Deaf church. I had to sit often though because it was hard to keep from falling down. When preaching, I had to hold the pulpit to keep balanced. That’s kind of hard to do when you’re preaching with sign language, which requires both hands and body movement to be understood. :-)

I did fine, however, until May 1999. By that time, I had to get a cane. Just one month later I needed a walker that my wife just happened to find in the trash. In May 1999, my church was getting worried so they approved money to get me health insurance. I hadn’t been covered by insurance since 1991. I had quit my engineering job to go to Bible College back then and had to give up my insurance.

I finally went to the doctor who immediately referred me to a neurologist. He evaluated me and suspected Neuropathy but needed more tests first. I got sent for Lyme tests, Vitamin B6 and E tests, and many other blood tests. The tests kept coming back normal. He sent me for a brain MRI and that didn’t show anything. He then had me get an EMG/NCV test which showed neuropathy. He then wanted a Nerve Biopsy but I didn’t want one. I cancelled that appointment and tried to figure out what to do next.

In July, I got a wheelchair from church. It was an old one with no foot rests and was beat up, but hey, it worked. I’ve been using wheelchairs ever since. I moved by sitting in the chair and walking with my legs while sitting. I was still able to put the chair in my car and hobble over to the driver's seat while holding on to the car. Driving was easy and something I loved to do.

My wife gave birth to our third daughter in August and I realized that, without her help, I couldn’t get into my home. I was allowed to stay in the hospital with her for the 2 days she and the baby were there.

I had to stop driving in September. One month before, a man rear-ended my car. That was ironic because PN had nothing to do with it. However, by September, I was not able to feel the brake pedal right. I was coming up to a light and missed the brake pedal! I finally got it in time and didn’t hit anybody. I immediately pulled over and let my wife drive. That was hard because driving is my favorite thing in all my life. She’s been driving ever since.

In September, I tried one of those Colonic Irrigations to see if it would help me. I’d done them years before, so I knew what would happen. At least I thought that I knew! It caused me to become very sick and I started to vomit continuously for the next 48 hours! I had to stay in bed the whole time. I couldn’t have Bowel Movements anymore and didn’t have one until December, 1999. Needless to say I could not eat either and drinking was difficult also.

I went to a Holistic Doctor who treated me for free. He discovered that my thyroid was overactive. I also did Chelation therapy about 8 or 9 times. We saw some improvement but I was still not able to eat much. In the last month I rapidly lost weight.

Finally, I needed to go to the emergency room and stayed in the local hospital for 3 days. I didn’t like the doctors, so I checked out and went home with nothing done. I still didn’t eat much. Drinking was also hard and I was back at the hospital to get rehydrated, but this time I would not be admitted.

The PN spread to my hands and right arm. Since I could not move my hands right I had to take off and let my wife do the preaching since July. I was still the Pastor but had to sit while she preached.

In November, I was so bad and had lost so much weight. I called my neurologist and he called back and wanted me to go to The Johns Hopkins Hospital in Baltimore as they would be better for me and had top Neurologists there. I gave in and an ambulance picked me up and drove me the 40 miles to Johns Hopkins.

I was brought to the emergency room but had to sit on the "rolling stretcher" (forgot what it’s called) for 5 hours or so waiting for a bed to open in the Emergency Room. Finally, I got a bed and they took blood tests. I sat there all night until around 4 a.m. when a Sign Language interpreter showed up. The Neurologist resident showed up and ordered a new MRI and more blood tests. I waited all day until evening when a bed opened up for me to be admitted. I spent the next 3.5 weeks up there being tested over and over.

The tests were a repeat of the earlier tests, plus many new tests. I also had nerve and muscle biopsy from my left leg (not the ankle that I had earlier refused. I also had the Lumbar Puncture test (spinal tap). They were also trying to figure out why I hadn’t had a bowel movement since September. They treated that with laxatives but still nothing came out. I had to have a tube inserted into my nose which ran to my stomach. Told my interpreter that I finally understood what, "up your nose with a rubber hose" meant. Acid kept building up in there and had to be emptied all the time. After a swallowing test they wouldn’t let me eat or drink and fed me by I.V. They told me that if I wanted to go home soon I would need a feeding tube in my stomach. I gave in to that after 2 days and had it done.

However, when they were ready to do it they discovered my colon was in the way. So a couple of days later, they put it in my small intestine instead. I was fed Ensure that way all night long each night.

I also had my eyes tested and found problems related to PN. Hearing tests confirmed that I was Deaf. I already told them that, duh!

One other thing, my PN does not cause pain or stabbing feelings. It’s just a constant numbness and inability to feel my feet or hands right.

I’m not nor have I ever taken any medications for it, even today. The Neurologists at first suspected a hereditary PN but after negative results revised it to Idiopathic. Lately, he suspects a Mitochondrial disorder but not confirmed yet. I was moved to the Rehabilitation wing to get Therapy. I was there for 2 and a half weeks. I got back a lot of strength there and really improved. I also got to eat and drink there and had my first bowel movement there! Wasn’t much but it was a start. I was released in December 1999. Going outside for the first time in 6 weeks was great! My wife managed to fit me in our Geo Metro with my new borrowed wheelchair, my things and our 3 daughters and get me home fine.

In January, I was getting Home therapy and finally was eating again. The feeding tube was removed then as well. Therapy stopped in March to keep from using my insurance limits up. In March a custom Wheelchair was delivered but they neglected to pick up the old one, so now I had two. I informed them several times that I still had the loaner but they never came to get it. They still haven’t got it today! (they later told me to keep it.)

After all this stuff happened I was 100 pounds lighter and very thin! I couldn’t get back to see the Neurologist until January 2001, more than one year after I was out of the hospital!

I have improved so much in the past year and a half, but my PN is worse and I still can’t walk. I can eat and drink normally again. I have to use a bed pan because I can’t get into my bathroom and if I could I wouldn’t be able to balance or clean up with my hands. (if you know what I mean). My wife has to give me sponge baths. I have only had one shower since 1999!

During 2000, I got reinstated on Social Security Disability (Had SSDI before because of Deafness). A church gave us a free donated van, a member of that church gave us a scooter and many other blessings, some miraculous, were received. I couldn’t use the scooter because of balance problems so I gave it to another PNer who needed it. I hope to get an electric wheelchair instead.

Since I sent this first story, I've gained back most of the weight that I had lost. ( which means I'm big again, darn it!) It mostly came back in 6-8 months time. I'm confused about that.

I also got the electric wheelchair, a 'Jazzy 1120' for PN. I spend most days at the computer or in bed. What a boring life! Well, that’s my story, very long I know but had to share it. I’ve probably forgotten some details but I hope it is interesting. I’ve been very frustrated to find that most PNers can still walk, albeit with a cane or walker. I still cannot after 2 years and I don’t know why. I’m sure there are others but I’ve yet to hear of any.

Scott Hobbs