CIDP STORY
Mom's recovery an early present
Mike Hautamaki
Mesabi Daily News
Last Updated: Saturday, December 25th, 2004 10:28:52 PM
VIRGINIA — Christmas arrived a week early for me and my family this year.
Come to think of it, the gifts started flowing in around six months ago.
Last Friday, a letter came in the mail from my mother Pam's neurologist. It was a short note, only four lines long, but one sentence made my mom grin from ear to ear:
"Per my last evaluation of Pamela Hautamaki in August, 2004, I believe she is capable of driving a motor vehicle safely,” the note read.
The letter was just the latest in a string of improvements my mom has seen in her health, which has given us all a boost over these past few months. It's the best holiday season we've had in three years, simply because we've all been able to enjoy it.
Last November, I wrote a piece for one of our Health Pulse editions about my mom's struggle with CIDP (chronic inflammatory demyelinating polyneuropathy), a debilitating nerve disease that left her physically and emotionally wrecked. CIDP took nearly everything from her. It left her confined to a wheelchair, took away her driver's license and her job, made her a prisoner in her own home, and in some ways also kept her from being a wife and a mom.
I wrote that story approximately 18 months after my mom was stricken with the disease in March of 2002. She had made some small improvements, but still had a long road ahead of her. CIDP is a strange illness. It turns your body's own immune system against you and unleashes its rage on your nervous system. It strikes some more quickly than others, and unfortunately that was the case with my mom.
What started out as tingling and numbness in her legs quickly became something much more serious. A perfectly healthy woman to that point, my mom suddenly found herself numb from the neck down, unable to use her arms and legs and greatly weakened by the onset of the disease.
The next year and a half was an enormous test for my family. My mom spent nearly four months in three different hospitals, enduring a litany of tests and treatment plans that failed to put her on the path to recovery. My dad put most everything else in his life on the back burner so he could be by my mom's side every available moment, while my brother and sister and I tried to do whatever we could to ease the pain they were going through.
It was the toughest experience I've ever dealt with. Many unpleasant memories are still etched in my mind, one of which has hit me like a freight train more than once over the past few weeks.
It's two days after Christmas, two years ago, and my mom is sitting in front of her computer. I walk into the room and see the tears streaming down her face. She's reading about her illness and sees that a small percentage of CIDP victims, those that have the progressive form of the disease, are never able to free themselves from its grasp.
"That's me," she says. "That's me. This is how I'm going to die."
All I could do was hold onto her and cry with her while all sorts of sad thoughts crept into my head.
She's not going to be there to see me graduate from college, I thought.
Fast forward six months to my commencement ceremonies at the DECC in Duluth. While waiting for it all to begin, I heard a familiar voice up in the crowd. I glanced up to my right and saw my entire family looking down upon me. My mom made the trip down that day, even though she hadn't been feeling well, and there she was, waving and flashing a huge smile.
My mind briefly flashed back to that harrowing moment we shared months before and tears started to well up in my eyes. It was one of the happiest days of my life, because she was there to see it.
Running out of options, my parents had connected with a neurologist at the University of Minnesota earlier that year that wanted to try a different approach to treating my mom's illness — chemotherapy. Finally, we had found something that worked. Nine long months later, he delivered the good news. The chemo had arrested her disease.
It wasn't until this spring that my mom began to see marked improvement, especially in her strength. In March, my parents and I moved out of our three-story house in Virginia and into a smaller, one-level home in Midway. The change has been wonderful for my mom. It's given her so much more freedom and independence.
After building up enough strength, she began walking this past summer with leg braces and a walker. She soon graduated to a pair of paisley-colored canes she picked out herself and has been up and about ever since. She still uses her motorized wheelchair and battles pain and fatigue on a daily basis, but walking is something my mom at one point felt she would never do again. It definitely has been a welcome sight.
The biggest improvement she has experienced, though, has been in her hands. While still far from normal, my mom is now able to do many of the things she used to, such as laundry, writing out bills, washing dishes and even a little cooking. She helped out a great deal with Thanksgiving dinner, preparing the meal, setting the table and cleaning up.
Thanksgiving was all about making new memories in new surroundings and Christmas has been much the same for us thus far. My mom and dad went shopping to buy their gifts, rather than paging through catalogs and ordering them like she did last year. They decorated the house together, wrapped gifts together, and put together the menu for our annual Christmas Eve dinner. She even wrote out all of her Christmas cards and baked a big batch of cookies.
(Hey, who knows? Maybe next year I'll ask her to drive me around town to do my Christmas shopping.)
With all the preparation finally behind us, we’ll all gather together Christmas Eve and just enjoy being a family. We’ll watch the Vikings-Packers game, stuff our faces with food, and make a mess of our living room floor as we tear open our gifts. This Christmas will be different, but it’ll also be just like so many of the ones I loved while growing up. It’s great to have that feeling back again.
As the New Year approaches, my mother's health will hopefully continue to improve. These days she spends much of her free time helping others around the world with CIDP cope with the disease, keeping in touch with them via either email or phone. She does her best to lift their spirits, always trying to deliver the same message: "Never give up hope. It may be all that you have left."
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