Brian's Story

My name is Brian and I live in New Hampshire. I'm 58 years old and am currently undergoing treatment for CIDP, which is Chronic Inflammatory Demyelinating polyneuropathy. I have injured myself saying that.

This malady began to manifest itself as a balance problem that would evidence itself when I would close my eyes when shampooing in the shower. I noticed at first that my toes became extremely overactive when my eyes closed, not unlike the wing tips of a bird in flight as an even keel was maintained. Within about a week, it became necessary to touch the shower wall with an elbow or knee in order to feel balanced. I also felt that my legs were starting to get very heavy, and was beginning to feel more knee and hip pain than my years should warrant.

At work, where I deliver pharmaceutical supplies to hospitals and/or pharmacies, my strength was noticeably ebbing. We handle anything from cases of printing paper, which are pretty heavy, to wheelchairs which are awkward, to smaller packages of insignificant size and weight. On the day I decided that I needed to "take a week off" for R&R, I recall in particular trying to lift some ENSURE fortified drink cases. Normally one would grab 5 or so cases of 24 at a time to load, but I could lift only 2 cases and, in fact, my left arm was rapidly collapsing under the weight of the two cases. Prior to this I had been having trouble getting into my cargo van as my legs, and in particular, my knees had started to really hurt with exertion, and in fact, my feet and hands had started to experience numbness. Another oddity was that the ignition key position in my cargo van in the "OFF" position seemed to be suddenly as far clockwise as my wrist could reach. In other words, I was suddenly unable to muster the strength to start my vehicle.

During my "R&R week", I began to really have difficulty getting started. My creaky ole bones had for some time been, well, reluctant to perambulate steadily, if I may. I was having difficulty stepping out of the shower over the seemingly now insurmountable tub walls. My gait was becoming, at best, unwieldy, stairs nearly unmanageable as my legs started to feel lead like.  When trying to dress, it was taking me five or ten minutes to put socks on, about the same to tie my shoes, and the numbness that would soon envelope my hands and feet completely, was making it impossible to find the tab on my fly to zip up, impossible to feel the buttons on my shirt, never mind the slot that the buttons fit in. I actually cut my self using a Gillette safety razor for the first time ever as my steadily declining hand co-ordination allowed the razor to slide sideways. After a week of "R&R", I was really screwed!

The Veterans Administration (VA) has very good medical center nearby and I , fortunately, had the foresight (luck!) to avail myself of it. I dragged myself to the emergency room in late November of 2004. I was treated by a Dr. Lamphere and will always be grateful for the attention and care he provided as he seemed to know something out of the ordinary was happening to me, even as I didn't. He referred me to a neurologist, Dr. xxxxxx, from whom I first heard utter the word "neuropathy". He also uttered the words vitamin B-12 deficiency, which thrilled me as I was convinced that due to the rapidity of the onset of the symptoms I was suffering, that a simple inoculation was going to do the trick and I would be back to work being a productive citizen. I received a B-12 complex shot as well as a supply of B-12 tabs and went home to recover. Naturally, after a week or so, I was still a mess. I borrowed a walker.

My oldest son, who is a military recruiter in a city not far from here, had recently moved in with me as he awaited base housing also nearby. He had left to drive to Iowa to pick up his three young children who were being driven to Iowa from Utah by their mom so that they could spend the holidays with me and my son. Whilst awaiting the arrival of the kids, I continued to deny and deteriorate. Shortly after the kids arrived, and after falling a couple of times, and over my fervent protestations, my three kids, en masse, took me to the emergency room at the VA. What they openly knew, and I secretly knew, was that I needed hospitalization and insisted that I be so designated. It was December 19th 2004. The emergency room doc suggested that we return on Monday the 20th, as he would still be there at 8AM on Monday and would be able to help expedite my getting hospitalized. Again it was Dr.
Lamphere who made the final decision to admit me. He again mentioned neuropathy, and to my chagrin, would not rule out either MS or ALS. Things were getting dicier. It was Sunday, December 19th 2004.

I was moved by ambulance to the VA medical center (VAMC) West Roxbury Massachusetts the morning of Dec 20th. I was on a walker then and by Christmas eve I could not even stand, let alone walk. I had lost all feeling in my hands and feet and, in fact, all extremities had become useless, and hapless was my middle name.

VAMC West Rox, like all hospitals, is kept very warm. Since my bed room at home has only radiant heat from a stove in the room below it, and is thus very cool, I found the hospital bed to be all too toasty. The bed is one of those Hill-Rom tanklike military electric beds with the adjustable head and foot sections. One of the odd symptoms of CIPD is the absolute hyper-sensitivity of the skin of the otherwise totally numb extremities to the touch of foreign surfaces. In other words, the mere touch of the footboard of the bed was akin to an electric shock. Thus the first 10 or so minutes of every night to bed was spent "dolphining" up the sheets to get my toes as far from the footboard as humanely possible. This "scooching up" was due to the total inability to use hands and feet, and would, every night end up with me lying there exhausted and covered with sweat, all of which was made more difficult by the extra sheet the nurses would lay tucked in crossways across the bed, as well as by the plastic padded sheets they lay across the bed midsection, I guess because VETS leak, or something.  It quite honestly took me WAY too long to realize that if I took the electric headboard way negative and then the footboard way up, well, then gravity helped.
 

And that was only the beginning. Since several medications were being ingested, including pills that produce copious amounts of pee, 4 0r 5 times night it would be necessary to fire up the bed and get the headboard cranked up to a near sitting position, being oh so careful that my right hip was perfectly positioned next to the railing end so my feet could be pivoted out to the floor. Then I could put my head against the now nearly vertical railing and, sans hands, push my head against the railing to a sitting position, which I could do, eventually, in about 90% of attempts. The other times, well, it was cussingly frustrating as it was motorize back down flat, scotch, and like shampooing, repeat. Then it was pee in the duck.

I feel uncomfortable comparing the symptoms I suffered with those endured by people with spinal injuries. If I could claim some kinship with out first hand knowledge please allow that, because I felt pretty helpless allot of the time. I apologize if that sounds like a clumsy sentence. I could neither get into nor out of bed unassisted. Though I could pee using the urinal (duck), I needed help to the toilet, and quite frankly and humiliatingly, to wipe my ass.

The whole human waste issue is something that I found very interesting, and here I need to become very personal but, after all, this IS a medical discussion. CIDP rendered me in a situation that can best be described as causing, in the words of George Costanza, "severe shrinkage" in the area of the genatals. Coupled with the fact that I am not circumcised, I would find myself in the middle of the night having to pee VERY badly, trying to operate a SLOW MOTION electric bed to a position from which I could sit on the edge of the bed to use the duck, failing oh, 10% of the time and having to go back to step one, go flat and repeat the entire process. Then it was find the shrunken thing with fingers that could not differentiate between a small rubber ball and a small triangle in a bowl of dry rice in OT, skin it back and try to pee straight into the duck. I had my share of accidents and I SO dreaded the urine smell that seemed to follow me around. My fingers at this point were so useless, I was unable to button a button, even if it was on something that I was holding in my lap, or even snap the snap on my VA issue pajamas.

As a result of this inability to work even the simplest of snaps or buttons, I was frequently found sleeping with "everything hanging out", if you will and was on more than one occasion admonished like some sort of pervert to "cover up". That was very frustrating. It was a little dishearten to see how many of the symptoms of this malady are totally not known or understood. But if you think about it, how do you describe appendages that are totally numb yet wildly sensitive at the same time?

The hoyer lift is an interesting mechanism. It can best be described as critical care's engine hoist. Normally, when I needed to hit the john, three or so people would be needed to get me from the bed to a wheelchair and then to lift me to the toilet and then reverse the situation so it was peoplepower to the rescue. One of the nurses aids however, bithya, a tiny whisp of a thing would readily and expertly, by herself, employ the hoyer and have me on the john in 5 minutes. She is just one of the many fabulous people that helped me along the way. The hoyer is very safe but so damn humiliating. She made it less so by her professionalism and warmth. Those kids had a saying that we'll keep you as "clean as a whistle" and they did.

My first week or ten days, were spent in the neurological ward where the first line of treatment was intravenous Imuno-globulin or IVIG. This treatment was administered over a 5 day period and consisted of an IV drip of .1mg/hr for 10 hours followed by a saline solution for about 7 hours, rest then repeat for 5 days. Then it was wait for 3 weeks, oh, what the heck, let's give it another week. I experienced absolutely no feelings, good or bad from that procedure. Concurrently, we were also conducting physical therapy which seemed nearly pointless then as I was kinda like a wet noodle and could not even stand let alone walk. It was a frustrating month which seemed like at was just flittered away.

It was then decided that plasmapheresis was the next way to go. The procedure required a surgically implanted line from a vein in my neck which was then routed under the skin in my chest to two connectors which essentially hung over my right nipple. The first procedure took about three hours as my vital signs were carefully monitored and blood pressure maintained for the duration. It was determined that there was no deleterious reaction to the procedure and the required time per treatment was speeded up to about 90 minutes. The treatment was painless and had no affect on energy levels, in fact I felt quite normal although I would basically rest for an hour after being treated.
Much to my delight, within the first three treatments, which by the way were three times a week for the first couple of weeks then twice a week for a total of about 14 treatments. I actually began to feel better. By that, I mean I actually began to FEEL. First, I had a pain in my toe. It was sorta OW!, Yeah!! Then my right hand started to lose the numbness as the numbness seemed to creep down my arm and out the fingers. Within a day or two of beginning a healthy dose of steroids (Prednisone at 80Mg/Day) the severe pain that I had been experiencing in my hips and knees seemed to vanish and I could quite suddenly and easily lift my legs off the bed which was an absolute nightmare in PT. I felt right there that I would stand today, and I did. I am not some kinda macho man that thrives off of my virility, but if I carefully peruse the notes I made during treatment, there it is, about halfway into treatment, maybe iteration # 6 or #7, oh, it's in red! It says "Eureka!" That was the oh so sudden re-emergence of my manhood after many, many months of inactivity. Forgive my juvenileism, if that's a word, but some things really do matter to a guy.

I was able to stand from this point on with the exception of one day, about two days later. I'm not sure why that happened. Progress has been steady and I walked with assistance for 20 feet, then 40, then 60 in consecutive days.
In another week, I was using a walker and was covering several hundreds feet on the weekends with my family.

As I look back on the initial Physical therapy session, when I was undergoing IVIG treatment, my lowest of times, one of the exercises we did was on the rickshaw. The weight I was able to lift then was 6 pounds!! I was now doing 80 pounds. The numbness in my extremities was now localized to my lower feet.

On March 10, 10 days short of 3 months after arriving, I was transferred to VAMC Manchester, NH about 15 miles from my home to continue therapy and plasmapheresis if required. On March 12 I was given a pass to spend the night at home. Finally!!
At Manchester, I have an hour of physical therapy a day before and after which I spend as a patient taking the assorted meds I need and tending to a suddenly volatile blood sugar situation brought on by the steroids. Counter to what I expected, I have experienced 2 low sugar episodes, which caused me lightheadedness, sweats and mildly blurred vision. Adjustments are being made, I was attentively scheduled to be released on March 12th, but contracted pneumonia on the 18th. I have, in rapid succession, gone from a walker to a cane to walking with a limp with a sore left knee. I really feel that the proper treatment given at the proper time in the proper sequence was a huge factor for me.

I would be happy to answer any questions that may come up regarding my situation and will gladly share any info anyone may find helpful. My e-mail is bsulli4207@hotmail.com

Thanks for your patience
Brian Sullivan