Walk, Walk, Walk . . .

Weeks have gone by since my last post and so much has happened that it overwhelms me to even consider writing about any of it. So I won't.

Instead I'm going to write about my dad, my Tato, master piano player, expert kitchen tiler, gardener extraordinare. Oh, and a pretty good oceanographer too. In less than two months a year will have passed since he left this world. It doesn't seem possible, but there it is. A whole freaking year. It just blows my mind.

On the anniversary of his passing my family and friends will be joining me in our third Walk to Defeat ALS, marching around the Washington Monument as the Legeckis Wave, a formidable team named after a wave pattern discovered by my dad back in the 1970's - when he was still young and tall with savagely tan skin and black hair covering his head and face. This is the Tato who carried me and my sister on his shoulders, who could swim an entire length of the pool in one breath, who wowed us with amazing dives off the board at the pool. No way could some monster like ALS take this man down.

My dad with my little sister Vanessa 

But it did. Most people who hear "ALS" or "Lou Gehrig's" disease really don't know what that means. It's just another disease that people raise money for. We're inundated with people's causes online - asking for support for a walk, a run, a hike, for illnesses like ALS, Parkinson's Disease, various cancers, Alzheimer's - the list goes on and on and on.

If you don't know what ALS is, you will after you read this.

I didn't write a lot about what my dad was specifically going through at the time with respect to his privacy. I didn't think he'd appreciate me writing about his slurred speech, his drooling, his inability to clear his throat, his wasting body. But I'm going to write about it now. If I'm going to ask people to support a cause, I think they need to know exactly where their money is going and whom they are actually trying to help.

It started with a hoarseness in the throat and an increased feeling of fatigue when speaking.  My mother remembers being overseas with my dad years before his diagnosis for one of his conferences. My dad was known for using his bizarre sense of humor to make a dry, scientific talk about ocean currents seem somewhat interesting. After giving his talk he mentioned to my mother that he'd been having difficulty with his voice during the speech. Of course they thought nothing of it and went on with their vacation and their lives. We all have nagging symptoms that we ignore every day. Why should this be any different?

It slowly progressed to the point where my dad felt the need to get his voice checked out. He was having trouble talking for longer than a few minutes and no longer felt like he could sing along when he played the guitar or piano. His doctor sent him for voice therapy, telling him that half of his larynx was inexplicably paralyzed.  I wonder now why he wasn't immediately sent to a specialist to root out the cause of the paralysis.

In June of 2009, he finally went to see a neurologist who told him that she thought he had "pseudo-bulbar palsy" and that he probably had about 2-3 years left to live. I don't think they taught her anything about empathy or tact in med school, because she told him this matter of factly and then left the room. You don't tell a man who has been healthy his entire life that he might have 2-3 years left like you're giving him a weather forecast. Then she came back and said - "well, it's not a sure thing, let's run some tests and we'll have a better idea by the end of the week. Come back and see me in a week."

At the time my mother was out of town. We decided not to say anything to her until we knew for sure. I personally wanted to call her but Tato said no, what's the point, let her enjoy her trip and we'll tell her for sure what's going on when she gets back. The next day was Father's Day. I remember wondering if we had many Father's Days left. I broke down sobbing several times that week and I remember telling my husband "They'd better not tell him he has ALS because I do NOT want him going through that." My dad spent hours on the internet researching every motor neuron disease out there and convinced himself he was a goner.

Then the test results came in. "Turns out you don't have motor neuron disease after all," said the cool, unblinking doctor. "You have something treatable called Myasthenia Gravis."

Hooray! We couldn't believe our good luck. We spent the rest of that summer having the time of our lives, celebrating the fact that our Tato would be with us for years to come. So his speech was slurred, so what? At least it wasn't fatal.

Apparently the doctors were not convinced of that diagnosis and continued running test after test after test to rule out every possibility. My Tato's speech continued to deteriorate - a tragedy in and of itself to anyone who has ever heard him give one of his famous improptu speeches, the most memorable being the one he gave at my wedding in which he quoted Johnny Cash's "A Boy Named Sue" and somehow tied it in with my marriage. I think that by Christmas he knew he had ALS, but being the protective parent he was he didn't let on until the diagnosis was official in January of 2010. That was when our entire world shifted.

People diagnosed with ALS are given 2-5 years to live. There are those who live with ALS for much longer, but they are usually on ventilators, unable to move or speak but with their minds completely intact, requiring full-time care. We had no idea how long my dad still had left and quite honestly I don't think any of us thought about that part of it. It was too awful to think about.

2010 was not a bad year, now that I look back on it. Despite the fact that my Tato had surgery to place a feeding tube he was still able to enjoy most of the foods he loved. We were able to take our usual summer family vacations where he sent us into hysterics by dancing around to Greek music with his shirt off and pretending to be an elephant with his Bipap mask. Sure, some things didn't go as planned. A day trip to New York City to see John's cousin on Broadway almost ended badly when my Dad got so fatigued walking two blocks that he had to lean up against a building - but then we ended up in a cozy pub where he warmed up with some "grog" and all was good.

But things were going downhill. His speech got harder and harder to understand, which led to much frustration for us and for him. Social gatherings became difficult because he was constantly wiping his mouth and no one could understand him. He lost a lot of weight because he just couldn't keep his 6'3" frame nourished enough with Ensure and the occasional soft-boiled egg. His posture, already rounded from years of slouching, worsened to the point that he began to resemble a hunchback. Every little bit of physical activity wore him out. The man who spent hours in the garden after work and worked tirelessly to fix up the house was gone. You could tell that his inability to do things was eating him up.

There is a feeling of helplessness that goes along with having a family member with ALS. What can you do? I channeled that helplessness into trying to do something good, which is why I formed our very first Legeckis Wave team for the 2010 Walk to Defeat ALS. My dad came to the walk but he was already weakened enough that he wasn't able to do the actual walk. He sat on a bench in the shade and waited for us. When we returned he rolled around on the ground with his grandchildren. Sure, he was weak, but not too weak to play with these guys . . .

Richard and his grandchildren at Walk to Defeat ALS 2010

2011 was not as kind. ALS reared its ugly head and did its damage, decreasing my dad's lung capacity, forcing him to use devices to communicate due to the severity of his slurred speech, and making him need walkers and motorized wheelchairs to get around. This is where the ALS Association swooped in and made sure we had everything we needed: communication devices, a motorized wheelchair that tilted and reclined and allowed him to "toodle" around the neighborhood, various walkers, feeding equipment, the works. Angels in disguise.

By the 2011 Walk to Defeat ALS he was severely incapacitated. He was still walking (highly unusual for an ALS patient) but could not even walk the distance to the kitchen anymore to prepare his own feedings. He had a caregiver during the day and spent a lot of time sleeping with his Bipap machine basically taking over for his lungs. On the day of the walk we arrived in DC with heavy hearts - it was a gorgeous day but all we could think about was that he wasn't there. I remember bursting into tears several times during that day, knowing the inevitable was near.

He passed away five days later. I still can't write about those days between the walk and his passing. Maybe one day I'll write about it, when I'm ready. I can't do it yet. The emotions associated with that time are still too raw.

Having said that, we were lucky. He was walking up until two days before his death. Most ALS patients lose the ability to walk well before the end and have to rely on full-time care. I have to be thankful for that. It's the only positive thing I can say about what he went through.

My father was a healthy, vibrant man who was looking forward to retirement, to traveling with his wife, watching his grandchildren grow up, reaping the rewards of a long life of hard work and generosity. ALS took that away from him. ALS took him away from us.

My dad often said he was lucky. He got to live a full life. Granted, he did not inherit the legendary longevity of his Lithuanian parents - his father lived into his 80s and his mother into her 90s. But he was thankful that he got to raise his kids, travel the world with his wife, enjoy the things that he loved to do. He had time to reflect on that in the past two years and even though there were many dark days, we had a lot of sunny days too when we would shove ALS to the side and enjoy each other's company.

Walk. Walk. Walk. My dad could still walk during the last week of his life, but it was a struggle. Walking is something I don't even think about. I can only imagine how he felt to fight for each step. This is why we walk, why we keep walking. After last year's walk my mother told me that she didn't want to walk again this year, that it would be too hard, that the past year and half had been a nightmare and she wanted to forget it. I understood what she meant, but I knew she'd change her mind. Walking together feels right. My dad would have wanted it that way.

If you are interested in donating to our team and learning more about the ALS Association, visit our team page.

Addendum: Here is the link to the 2013 team page for the Legeckis Wave - please help us end this disease!!  http://web.alsa.org/site/TR?pg=team&fr_id=9180&team_id=238582