March 2017 – Something I Didn’t Tell You

Anyone who knew me before Neil got ALS knows my garden was, once upon a time, my pride and joy.  They probably know I grew up without a lot of means…so I never really had a yard or dug around in dirt, and I certainly never understood or loved worms like I do now.  When I told Neil years ago I wanted to turn what was, arguably, the flattest lot in Pittsburgh but mostly clay, into a beautiful space to grow veggies, flowers and have our kids play in it… he kind of laughed and said “good luck with that” and “don’t spend a lot of money”.  Haha.  Neil was interested in many things, but grounds-keeping was not one of them.  (more…)


December 2016 – How to Outlive a 100% Fatal Diagnosis…

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It happened again this week. It actually happens at least once a month, sadly sometimes two or three times a month. Some friend of a friend, cousin, neighbor knows of a person who has been diagnosed with ALS (or alzheimers, or an incurable cancer, or…). Or worse…their kid has. My phone rings (more…)


August 2016 – On Living (and a $$ Update)

florenceWriting this as I sit on a plane heading home from a quick “retreat” in California.  I wanted a little mental break before the busy-ness of Fall sets in, without the kids and in my happiest place.  To connect with the beach town where I was born and still call home when I’m not referring to my adopted Pittsburgh.  Being in the surroundings of my childhood and a place that Neil loved too – the smells of ocean air, sounds of seagulls, sights of nature and general hippie vibe – recharged my soul at just the right time

But my getaway started with a moment that set me back, giving me an unexpected emotional hurdle to clear on my way to Monterey.  It was on the plane while sitting next to a very nice man (more…)


June 2016 – Learning to Fly

us - june 2016 blogThere is a special kind of fear that sits right below the surface for me… a fear that the next heartbreak is just around the corner in the form of an accident or a disease. When you lose a loved one for a seemingly random reason, and especially if you are regularly told your loss was part of some greater plan that you have no control over, you start to get a little nervous. Why was THAT the plan? Why didn’t anyone ELSE get this plan? And what fiery hell is written for (more…)


May 2016 #2 – How to Win a Ball Game

Donor Wall rendering 3

He called it “A Whole New Ball Game”.  Neil’s idea was to build upon The University of Pittsburgh’s historic rundown of the Polio virus by Dr. Jonas Salk and invest LiveLikeLou.org funds in ALS research to find a therapy or a cure. New research. What’s called “basic science”. This means we would invest in the coalescence of the 120 neuroscientists already at the University, and focus their efforts within The Brain Institute, under the guidance of National Academy of Sciences-acclaimed researcher Dr. Peter Strick and with the recruitment of a top emerging expert in the ALS field, Dr. Christopher Donnelly, most recently from Johns Hopkins. And then we would expand research and go even deeper into the causes of ALS and the related afflictions of Alzheimers, Huntingtons and Frontal Temporal Dementia. The LiveLikeLou.org pledge from February 2015 to raise $2.5 million kicked off this effort, and then The University of Pittsburgh and the UPMC Department of Neurosciences MATCHED us… bringing a total of $5 million toward what we believe will be the $10 million Research Center. And that’s just (more…)


May 2016 – Lucky

pic for blogWhen you are a teen girl and only some of your friends love skiing, the next best theme for a January birthday is… of course… hanging out at the mall. So Abby designed a scavenger hunt, split the “squad” into teams and they spent a Saturday morning finding stuff, annoying sales people, taking selfies with strangers and generally being silly. My job: pay for everything, take lots of photographs and try not to (more…)


March 2016 – Rise

neil with mom loralee - 1969

neil with mom loralee – 1969

Did you know that March 24, 2009 was the day Neil’s loving mother passed away?  March 24, 2012 was the day Neil and I celebrated our 20th wedding anniversary with a beautiful, bittersweet party knowing his life would be cut short due to ALS.   And March 24, 2015 is the day my precious husband left us.  So, pretty much March 24th is my least favorite day.  This year the kids and I will spend that day (more…)


January 2016 – Visits with Neil…

us at penguins gameOne night last week Abby lit a scented candle in the house – “I wanted it to smell like a nice fall day,” she said.  Well that candle burned for 15 hours before I realized we had an open flame in the house all night long.  This is the kind of thing that would make Neil’s head explode.  It was a habit of his to check all the doors and windows, lights and stoves before bedtime to make sure the house was secure for us.  I would make fun of him because, as I’ve said   (more…)


November 2015 – Look.

shirts 7 - feb 2015 neil in ht shirtNeil wanted you to see this picture, taken just weeks before his death earlier this year.  Before the Stephen Hawking movie brought home the horrors of living with ALS and before the remarkable ice bucket challenge, back in 2011 when Neil was diagnosed hardly anyone had heard of ALS let alone known someone with it.  It was then that Neil decided to use his journey to show anyone who would look exactly what ALS does to a husband, father, son, brother, neighbor, friend.  His plan was  (more…)


October 2015 – Inspiration

book shelves 4A friend reached out to me on the six-month anniversary of Neil’s passing. I wasn’t watching the calendar and really every day is a hurdle not made different by anniversaries so I wasn’t especially prepared.  But she noticed the date and sent me a note.  She said she misses him too.  Her gesture reminded me that Neil left a bigger void than just the one in our house.  Our community noticed when he was diagnosed, noticed when he (more…)