Kathy’s Story   (written August 2006 - for Kathy's Latest Update Click Here )

Kathy’s Adult Life in a Nutshell

Kathy graduated from St. Olaf College in 1977; she was inducted into Phi Beta Kappa; and she earned a master's degree from St. Thomas University. She joined the Office of Traffic Safety in the Minnesota Department of Public Safety in 1978, and became Director of that office in 1998. She has given her career, intelligence, and creativity to decreasing the number of families torn apart by car crashes. She served as president of the Governors Highway Safety Association and has been recognized by her colleagues for the excellence of her work, receiving (among other awards) the Richard P. Braun Award for outstanding leadership in research and innovation in transportation safety and the Forst Lowery Award for dedication to traffic safety. Beyond that, she is generous to local charities, enjoys her garden and yoga, loves to travel with her husband (Earl Rook), and adores her nieces and nephews.
 

We asked Kathy to describe how she came to be diagnosed with ALS and to summarize what has happened to her since that time. Here’s what she told us:

“I Thought it was Mad Cow Disease!”
In the spring of 2005, I started noticing strange sensations in my hands and legs. My left hand would cramp so hard I had to use the right one to open it up. I had trouble tying my shoes, and my typing became clumsy and slow. When I walked, it felt like I was wading through knee-deep water, and my left foot slapped on the ground with each step.

At first, I thought I was tired – or that I was just getting “old” (I had, after all, turned 50 in 2004). But by the autumn of 2005, the symptoms were more noticeable and the weakness in my hand was progressively worse. My leg muscles would cramp after the slightest movement, and muscles all over my body started twitching. I joked that I might have Mad Cow Disease – maybe I took a few too many trips to England, and ate just a bit too much British beef. But as the twitching got worse and the muscles got weaker, the whole thing was too weird not to notice, too weird not to worry.

I sought medical advice and over the next five months saw an assortment of specialists, had several diagnostic procedures (MRIs and EMGs), and endured a variety of neurological exams. Throughout it all, I just wanted to know what was wrong so I could begin the process of getting better.

In February of 2006, I was told I have Amyotrophic Lateral Sclerosis (ALS), commonly referred to as "Lou Gehrig's Disease.” At this point I knew what was wrong – but, since there is no treatment or cure for ALS, there was nothing I could do to get better. So instead, I have put my energies into understanding what will happen as the disease runs its course, continuing my traffic safety work as much as my health will allow, working with Earl to modify our home in preparation for a wheelchair-bound life, and spending as much time as possible with friends and family.

ALS Sucks – Here’s What’s Happening Now
I’m writing this in August of 2006, about six months after my diagnosis. My doctor thinks I have an “average” or typical progression – thankfully, not unusually fast; sadly, not atypically slow. About half of the people with ALS die within 5 years of their diagnosis, so that probably describes “average.” There is, however, no data on ALS progression in a more-than-usually-stubborn Swanson, so I’m expecting that to work in my favor.

Fatigue is an on-going problem, so I look for ways to conserve energy – basically doing the opposite of what fitness experts tell you to do to lose weight (sitting instead of standing, lying down instead of sitting). My balance and leg strength are seriously compromised, so I am using a walking stick or a walker wherever I go, and I just purchased a wheelchair so that I can be pushed in situations where even using the walker would make me over-tired.

My left hand is becoming progressively weaker – too weak to trim my fingernails, too weak to pick up a dish, too weak to push the buttons on my Blackberry. The right hand is about 15 months behind the left – I’m starting to notice in it the cramps and clumsiness that the left hand experienced in the spring of 2005.

The muscles that move my lips are starting to atrophy – so my enunciation is affected, especially when I’m tired. I find I’m self-conscious about this, and I’m trying to find a path to peace with it, since there is no way to stop the progression.

I’m still able to practice yoga, but I have abandoned almost all standing poses. There are so many facets to yoga, though, that there will be some part of it that I can do as long as I can draw breath – and that is a source of great joy for me.

Here’s what I know: there is wonder in this world, there is delight in this world, there are things in this world worth holding on to no matter what else is raging around you. The ALS is a relentless, miserable thief who steals bits of the physical me day after day after day – and as it continues its treachery, it will also try to steal the joy I find in the world and in this life. There are some moments when it wins – but I pretend those moments are brief and infrequent. There are many more in which friends, family, and the universe itself remind me what a wonderful world this is and how lucky I am to be a part of it.

We in Kathy’s Circle are inspired by her spirit as we work to support her emotionally, physically, and financially. ALS patients have several expressions that are important to them; the one Kathy likes best is “Never Give Up.” We’ve taken those words as our marching orders.

If you’d like to join us, please click  “How You Can Help.”

If you have questions, please call Holly Zelinsky @ 651-738-2366

We ask that you make donations through this website, however, if you would like to send Kathy a personal card or good wishes directly, she has asked that you do that either by mail or email.

Kathy Swanson

c/o Kathy's Circle

10186 Bald Eagle Trail

Woodbury, MN  55129

or  EMAIL KATHY DIRECTLY at:  rookswan@comcast.net

Please do not mail donations directly to Kathy. 

Kathy's Story     How You Can Help     Donate To Kathy Now     Sept. 07 Update

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