Actually, in retrospect I should have called this page “Roller Coaster” instead of “Adventures”

April 2007 - It’s been a long time since I wrote an update. Much has happened during the last seven months. The US Department of Labor denied my claim because no clear link existed between my stay in the Peace Corps and the CIDP. I did quit the Prednisone in fall but continued the monthly IVIG treatments. The results still were not very dramatic but overall I was doing fairly well. Inside the house I was able to walk around without cane or rollator.

   Because of the improvements in my symptoms, at the end of the year we accepted the invitation of EWOB/AEIOU to return to Thailand for two months. I would skip one IVIG treatment. Carol would be teaching her Community and Organizational Development course to young Burmese refugees again, I would continue as registrar keeping track of the students and their performance. Here is our story:

  Thailand is not very handicap friendly and I was concerned using my rollator, concerned about getting on to the converted trucks used for public transportation, climbing steps and negotiating other obstacles, lack of side walks, or side walks in need of repair. But for the first three or four weeks things went well. Thais were very helpful and considerate. The weather was great. We revisited many of the familiar places, skipped some because it would have been too difficult for me. But walking during the last few weeks was becoming more and more difficult and my stamina reached a low point. On March 8 we finally returned to Fort Collins, glad to be home.

   The first night home I fell going to the bathroom hitting my forehead hard against the wooden bed frame. Mixing a drink with a sleeping pill to get over my jet lag wasn’t a very smart thing to do. Since I had no other symptoms except a headache and a black eye, I didn’t see a doctor at the time. I saw the neurologist the following week and received a new round of IVIG. The bruises on my forehead slowly disappeared. The IVIG didn’t seem to do much. for me. On the contrary, my condition deteriorated to the point that I could not sit myself up anymore on the couch and couldn’t bathe myself without help. Carol rented a wheelchair so I could get around. Getting out of the shower with her help I missed the seat and fell on the floor. She had to call 911 to get me up off the floor. Easter Sunday we drove to Denver again for a new round of IVIG to start the following day. I lifted the rollator over the door threshold, lost control and fell on my left knee injuring it seriously. X-rays did not show any broken bones and once again we decided to wait. Three days later we returned home. I could hardly move around. We finally realized that the worsening of my symptoms was on the left side of my body. This couldn’t be CIDP or antiMAG neuropathy. Symptoms of both are symmetric. This must be something more serious, stroke perhaps. Carol took me to the hospital the next day. A CT scan of my head showed a huge hemorrhage on the right side of the brain, 3 inches by 3 1/2 by .5 inches. It was at least a month old. The brain had shifted to the left quite a lot and possibly down. A very dangerous situation which could have cost me my life. I was operated the next day and improvements were almost immediate. Strength in both sides of my body was equal again.

   I was released very soon after the surgery. A follow-up CT scan showed some air where the subdural hematoma had been and a little bit of liquid which should clear up in a few months. I am still in a wheel chair. An MRI revealed several fractures in my knee. I am not allowed to put any weight on it until it has mostly healed in a month. I am taking large doses of narcotic pain killers because of the almost unbearable pain. It is difficult right now to evaluate any progress in my CIDP symptoms because of the knee. Time will tell.

July 2007 - The fractures in my knee have healed very nicely but six weeks in a wheelchair have left me very weak. I started physical therapy last month and regained most of my old “strength” if I can call it that considering that the neuropathy continues to progress and has now reached my hands. I also started using our exercise bike again. I needed to get new pedals with straps to keep my numb feet in place, lower the seat and use a step ladder to be able to get on in. 5 minutes at low resistance is all I can manage. So far it has not improved my leg strength when walking.

   The monthly IVIG’s still don’t appear to do a lot for me. I’ve done more reading and Rituxan is the only promising treatment for my antiMAG neuropathy with the exception of chemo with its scary side effects. I made an appointment for next month locally with a different neuro. The monthly trips to Denver for treatments are getting to be too much of a burden, Staying at our daughter’s house has become very difficult because it is so small making moving around with the rollator or climbing into the bathtub to take a shower a daily “adventure”.

   I hope the new neuro is more open to getting me the Rituxan I need. Last week a 3 -months follow-up CT scan of my brain showed that the air pocket and the remaining hematoma have disappeared completely. But the expression “I need this like a hole in my head” has taken on a new meaning for me. The burr hole the neurosurgeon had to drill into my skull is still there and will be with me for the rest of my life.

October 1, 2007 - We celebrated our 30th wedding anniversary in Golden, Colorado, a quaint place east of Denver in the mountains. Other plans like driving up to Canada or Manteo, NC where we got married had to be abandoned. My overall symptoms had deteriorated to the point, that walking with the rollator had become a struggle. We rented a wheelchair and enjoyed walks along the river and around the farmer’s market.