I have been attacked by heavy maple syrup...

"You need to slow down. You need to take it easy. Anytime you feel better you start to move again. You just need to rest." These were the words Patrick uttered to me before he lifted me off the floor last night and carried me to my bed. "You need to sleep, Alexandria." Hmmm.... Its amazing that he was able to carry me up my stairway. I am not a light woman! Sleep. I miss out on so much life because I'm so tired and all I can do is sleep during the hours of the living, but when everyone else is asleep I lay awake staring at the ceiling.. that and reaching for my bottle of Ibuprofen. How many pills become a dangerous dose? 8,10,12? Its horribly depressing to have those closest to me realize I am declining day by day. I don't want to decline. I want to dance again. I want to do the Capital 10,000 again. I want to race Alexander down the street with Isaiah squealing behind us. I want to take aerobics classes or make it through an entire day without limping, hobbling, or needing help. More than anything, the thing I want most is my brain. Remember the Tin Man's son, "If I only had a brain.." I feel like this most of the time. I forget things. I get hopelessly overwhelmed by things. When Patrick and I first started hanging out together he thought the memory issue was intentional. As my medical problems have worsened so have my brain problems. I have trouble concentrating. I get lost going to places I've been to every day. Where I was once a seasoned mediator, the person called on to deal with the angriest patients, I can barely handle a slight disagreement over things that don't really matter. I become irrational, overwhelmed, and feel a wave of exhaustion taking over me. I have lost words from my vocabulary and at times stutter to get them out. At work, I am often overwhelmed with simple directions. I feel like a wave of heavy maple syrup has just been poured over me. It keeps me from being able to walk, think, talk, and the only thing it doesn't prevent is feeling. I still don't get how so many of my nerves have died, but I am still able to acutely feel PPS pain. Does that make sense? I found this article this morning. Its a good description of what is happening to me.

http://www.ppsr.com/Symptoms_Flare_for_Polio_Survivors.html
Symptoms Flare for Polio Survivors

.c The Associated Press

By SUE MAJOR HOLMES

ALBUQUERQUE, N.M. (AP) -- Phil Thorpe was a young airman in 1951 when he got orders for Korea. Instead of going to war, he wound up in the hospital with the scourge of the time, polio.

He was hospitalized for nine months, battling the virus that destroys muscle motor neurons in the brain and impairs the central nervous system. Doctors told him he would never walk without braces and crutches, but he proved them wrong through intensive physical therapy and muscle transplants.

Thorpe married, raised a family, ran a business. Then in the 1980s, he began tiring faster, his arthritis got worse and he started having trouble sleeping.

He was diagnosed with post polio syndrome, a cruel sequel that shows up 30 or 40 years after the infection.

Before vaccines were developed in the late 1950s, polio paralyzed or killed an estimated 50,000 people a year. Post polio syndrome, or PPS, could strike up to 70 percent of the 1.63 million Americans who survived.

Today, the 69-year-old Thorpe uses two canes to get around, and he’s learned ways to conserve his energy.

"The first thing you should know, it’s not fatal," he said. "The second thing is, there is no cure."

The syndrome occurs as neurons wear out. It can be diagnosed by muscle and nerve tests that separate it from the normal aches and pains of aging. Polio affected 90 percent of the motor nerves of those who had muscle weakness or paralysis, killing at least 50 percent of the nerves.

"Because those of us who had it had fewer neurons, our neurons branched out to supply muscles that didn’t have their own nerve cells," said Dr. Craig Nettleton, a polio survivor and psychologist at St. Joseph Rehabilitation Hospital and Outpatient Center in Albuquerque.

"Our neurons worked overtime," Nettleton said.

Because polio affected its victims’ brain stems, neurological disorders also show up. A 1990 post polio survey found most people with PPS have concentration, memory or attention problems.

"There are no primary memory problems," Nettleton said. "What I’m seeing is not so much a decline as a difficulty in getting information stored in the first place."

Thorpe said he sometimes has trouble keeping his mind on a task.

"It’s like my brain gets tired. You can’t will yourself to do things all the time," he said.

Other symptoms range from overwhelming fatigue and muscle weakness to joint pain, intolerance to cold and trouble swallowing, breathing and sleeping.

The problems all have the same origin—nerves killed or damaged by the polio virus years before, said Dr. Richard Bruno, director of the Post-Polio Institute at the Englewood Hospital and Medical Center in Englewood, N.J.

Post polio fatigue is associated with a severe inability to focus attention and by a marked reduction in the hormone that activates the brain. Magnetic resonance imaging reveals damage to the brain-stem neurons that activate the brain.

PPS sufferers also report new muscle weakness in limbs hit by the virus, but 75 percent also report weakness in limbs they believed weren’t touched.

"There’s no such thing as an unaffected muscle," Bruno said.

It’s like an eight-cylinder car running on four cylinders. "It’s not one of these things where you can say, ‘Push through the weakness and push through the fatigue,"" he said. "Every time you drain these batteries, the more likely for the battery not to recharge again."

That’s a problem for polio survivors, many of whom became strivers and overachievers. They beat polio by embracing the "use it or lose it" philosophy, and now they’re being told to "conserve it to preserve it."

Many find it difficult to slow down, use a cane or turn to a wheelchair and other devices for help.

This is what they tell Bruno: "I went to school, I went to college, I went to grad school, I’ve now become president of this company and I am not going to use a cane. I am not going to be a cripple again. I did that. I knew what that felt like and I am not going to do that again."

That’s why Bruno’s clinic takes a behavioral approach to treatment, having patients keep logs of what activities cause problems and how to modify those activities.

"If you take care of yourself, stop being Type A and driven, you won’t get any worse, and you will feel better," Bruno said. "But if you continue doing what you’re doing, just draw a straight line and follow it into the toilet."

Nettleton, 48, agrees it’s a tough adjustment. He got polio at age 5 but "passes for normal" since the virus didn’t leave him with atrophied limbs or other outward signs.

Now, however, he’s having problems with pain and fatigue. He knows his patients’ fear and their memories of feeling isolated.

"It’s a painful process for a lot of people," Nettleton said. "You have to work through this before you can deal with therapy."

Although PPS has become more recognized by the medical community in the past two decades, Bruno said only about six U.S. centers have formal clinical programs and research projects. Because polio is no longer an epidemic, post polio is viewed as a medical condition that will not occur in the future, he said.

Post polio takes decades to develop, so many people didn’t show up at doctors’ offices with new weakness until the ‘80s. At first, doctors diagnosed some with muscular dystrophy or other diseases. It took time to recognize that something new was hitting polio survivors.

Post polio clinics try to teach people how to pace themselves, to decide what’s important and ignore the rest, such as picky housework details.

"Dust," Nettleton intones, "doesn’t spoil."