Now I'm getting the chance to read books I didn't have time for before. Think of me whenever you see the slogan "So many books, so little time!" Now I've got the time. Cheers, Fred.
2. MY ILLNESS AND MY RECOVERY
An email I sent on Dec 16, 2002
Today seems a good time for me to tell my friends and physics colleagues where things stand in my recovery from Guillain-Barre Syndrome (GBS). I decided a few days ago to put my Aqua Therapy on hold for a while and only do exercises at home. The reason is that I am convinced that my progress in regaining muscle strength has nearly ceased. I expect only small gains from now on. This means I don't expect to ever walk again, since my lower trunk and leg muscles are too weak for me to even stand on both legs, much less walk again. The use of my hands will remain quite limited. I can only use my thumbs to type, but my right forefinger (my one good finger) works well enough for a left mouse clicker. (A letter as long as this one is a major effort for me.) I have reconciled myself to my condition and am in the process of adjusting my lifestyle to it.
Since my illness started a long time ago (on March 25, 1999), I think it best for me to review what happened to me. Over the 1999 Spring Break I had a bad head cold turn into laryngitis, then a sinus infection. The virus was a potent one that also gave me a bronchial infection, followed by GBS, which is often triggered by a potent viral infection or a flu vaccination. With GBS the immune system destroys the myelin coating of the nerves. Then signals from the brain can't reach the muscles, leading to paralysis. I had the rotten luck to get the axonal form of GBS - the worst form since it also destroys nerve axons that attach to the muscle fibers. My neurologist, Dr. Ajax, diagnosed GBS quickly and began the standard treatment quite soon after I went to the hospital here in Ames. This treatment is called plasmapheresis, in which blood is taken from one vein, sent through a centrifuge (which removes the heavy part that contains the immune cells that went haywire and caused the GBS), then recombines the light part with plasma and injects this "cleansed blood" into another vein. This procedure usually goes on for 2-3 hours a day for several days to get rid of the haywire immune cells that are destroying the myelin coating of the nerves and, if axonal GBS, also destroying nerve axons.
In my case, however, my veins kept collapsing after a short time, so it took much longer than usual to cleanse my blood. Dr. Ajax had treated dozens of GBS cases before, but none with veins that collapsed like mine did. He conferred with the world's leading GBS authority (from New Zealand, but I can't recall his name) who happened to be visiting at the Mayo Clinic in Rochester. They decided to continue the blood cleansing but to supplement it with blood transfusions. They both agreed that this was safer than sending me to Mayo, as they feared I was too weak to survive the trip. By the time my blood was cleansed enough, I was almost totally paralyzed - only my eyes could move. While in Critical Care I had four tubes in me - an IV, a feeding tube, a catheter, and a respirator pump hooked to a trach in my neck. When my lung capacity got up to 0.5 liter (10% of my pre-GBS volume) I was "weaned" from the respirator (breathing without the help of a respirator was a very difficult thing to relearn). Then I was moved to Acute Care.
They had already started therapy on me in Intensive Care. They first focused on range-of-motion exercises to keep my muscles moving. Physical Therapy (PT) worked mainly on my middle and lower muscles. Occupational Therapy (OT) worked on my upper body, arms and hands. Once I was strong enough to do 2-3 hours of PT and OT daily, I was moved to Rehab. But the trach stayed in for ten more months because my lungs were often congested with mucus. Still having the trach in my neck allowed RT (Resperation Therapy) to hand pump the mucus out when it became so thick a coating that it was very tiring for me to breathe. To make things worse I had pneumonia twice, during which times I was much weaker. But once my lung capacity rose to 3.5 liters, the trach was removed. That was a great day for me!
I got to go home three months later, after 13 months in the hospital. After five weeks of in-patient OT, PT, and nursing care at home, I began out-patient OT and PT in June, 2000. We hired health-care aids for about an hour of morning and an hour of evening home care. With the morning aid's help, I continued to do the PT exercises I had done with in-patient PT. I still do these exercises every morning, only I have gone from "assisted" lifting of arms and legs to moving them myself with Velcro-strapped weights (3 to 5 pounds) on each arm or leg. The OT ended when I started Aqua Therapy in October 2001, but I continued with and added to the OT exercises at home. At first Aqua Therapy was on Mon and Fri with no land PT, but in Feb 2002 I talked them into letting me add land PT on Wed.
June 2002 was the first month that I couldn't meet one of the monthly therapy goals. I didn't meet this goal until August. This was a strong sign that my muscle recovery was reaching its limit. Since then there have been many other signs. Since I was trying so hard, my therapists did all that could be done to delay the decision to discharge me from the therapy program. But the strength measurements in Sept 2002 did not show sufficient progress to allow the doctors and therapists to convince the insurance companies to continue supporting my therapy. I continued at my own expense as a punch-card patient for the last two months. However, with no progress during this period, I decided to limit myself to home exercises and stop going to the therapy pool. Then, since I had just gotten a home PC, I also decided to email this letter.
I've come a long way since getting GBS. At my worst I had lost 50 pounds of muscle, since many of my muscles had shrunk down to string-like thickness. I have since regained about half of this lost muscle weight. But if axonal damage doesn't heal within 1-2 years, the individual muscle fibers simply fade away and become useless. All one can do then is to strengthen the muscle fibers that are attached to those nerves that were again coated with myelin (and can thus be controlled and strengthen by exercises). My leg muscles have not recovered as we had hoped. There is almost no recovery below my knees and my thigh and lower trunk muscles are just too weak to support my weight. The "distal" nerves (to the hands and feet) are usually least likely to recover from axonal damage. As I said at the beginning, I will remain in a wheelchair and have limited use of my hands.
When I was paralyzed and close to dying, I had a very miserable life, with great uncertainty for my future. I have come a long way and I can do so much more now. I've done all I could in the way of muscle therapy - I've given it my best effort and am at peace with what I've been able to achieve. Compared to many others, I can do a lot of things in my present condition. Although I won't be active in physics any longer, I can keep in touch with developments by journals and the web. Doris and I can still enjoy travel and gardening together, but via TV. (I can still oversee my garden with my son Steve doing the work.) Then there is music and NPR; History, Discovery, Learning and Public TV, to name a few. Doris and I, together with my daughter Jennifer and Steve (whose condo in Des Moines is wheelchair accessible), went to the last Des Moines Art Festival. We also enjoy going to Ames' Reiman Gardens, which has added a lot (Butterfly Wing, Conservatory, Cafe, Gift Shop and more greenhouses, all of which are open year round) since the annual large physics meeting of the PHENIX collaboration that I helped organize here in Ames in 1998.
When one undergoes as large a physical lifestyle change as I have, one's emotional mindset is also very strongly affected. There is one thing that one must do - focus on things one can still do and not think about things one can no longer do. In other words: always think positive, never negative. One has to make this work - and I have! Some of my family and friends have told me that they couldn't have done what I've done emotionally, but I've told them you can't know until it happens to you.
I've always been an avid reader. Now I'm getting the chance to read books I didn't have time for before. Think of me whenever you see the slogan "So many books, so little time!" Now I've got the time!!