Today’s blog post is the last in the series from our friend Scott Liniger, who was an ALS patient caregiver for his partner Tammy Hardy for six years. In his series “Dispatches From a Former Caregiver” Scott has explored the parts of his and Tammy’s story that tended to the, shall we say, more irreverent side of their journey.
We’d like to say a heartfelt thank you to Scott for taking us along for the ride on this journey with him and Tammy. Scott thought it appropriate to give Tammy the last word to end the series, and so now here are a few final words from Scott, and Tammy….
By Scott Liniger
I want to thank all of you for taking the time to read about our travel misadventures. Believe it or not, those memories evoke a lot of smiles. And there are few stories I chose not share. The guilty must be protected. I hope it was clear that we faced ALS with a lot humor, and Tammy certainly faced ALS with incredible bravery and fortitude (and some humor, too).
When she was first officially diagnosed (we were pretty certain what it was by then), I had some idea of what was ahead. As a rabid baseball fan, I knew very well the Lou Gehrig story. I’d seen the movie, read the stories, and knew it didn’t end well. But even all of that doesn’t prepare you for what’s actually in store. Fortunately, we had tremendous support from family and friends, and not just lugging shoes across Europe (although again, big help!). The goal was always to make it as normal as possible, even though normal constantly redefined itself. That just meant we adjusted accordingly as best we could.
Through it all, Tam stayed Tam. She had her occasional moments, but she kept adjusting to normal as normal kept changing. These little stories were meant to highlight her and her approach to this horrible disease. And maybe show how well she tolerated a sometimes block-headed partner. Because these are her stories, I thought I’d give her the last word. When Tammy, 33 at the time, was officially diagnosed in the fall of 2002, she sent a note to our friends and work colleagues (we worked at the same company). It hadn’t gone unnoticed that she sometimes slipped or walked a bit slower than she once had, and our friends were concerned about her health. She felt it important to let her friends know what was happening, and she did it in her purely Tammy manner:
As many of you know I’ve been dealing with some pretty serious health problems over the last six months or so. I wanted to give you an update.
After undergoing numerous unpleasant tests, the neurologists have confirmed a diagnosis of ALS…. Yes, I know, I’ve never played baseball and I’m not left-handed, so how could I share a disease with Lou Gehrig. Well, the doctors cannot tell me why. That’s the interesting part about the disease, it strikes 2 in every 100,000 people and researchers have yet to figure out why. I guess it was just my turn to win the lottery; in the future I’ll be more specific about what I wish for.
If you’re wondering how I’m doing, so far, OK. I’m just taking it one day at a time, some days are better than others. As I’m sure you all know, there is no cure for ALS. It is a progressive disease which means I will continue to face many new challenges as time goes on.
Hopefully I’ll have the strength to get through them and enjoy the rest of my life, as it’s been pretty good so far. I’m taking medication to slow down the disease, but as you can tell it’s already affecting my mobility. So, if you notice I’m moving a little slower or seem a bit clumsy (I’ve been known to trip and fall once in awhile), now you know why.
Well, I guess that’s enough news for one day. I do have one favor to ask, and it’s for you to continue treating me as you always have……. and be careful not to trip me down the hall.