Welcome to Love Always Hopes
Hi, I’m Justin. I was recently diagnosed with amyotrophic lateral sclerosis (ALS; aka Lou Gehrig’s disease). This is a motor neuron disease that affects the nerve cells in my brain and spine, and will ultimately affect my physical abilities.
The severity of this diagnosis is not lost on me, but rather than sulking in the darkness of it, I am instead choosing the following:
(1) I am choosing hope. The way I see it, being optimistic and hopeful is a much better approach than the alternative.
(2) I am choosing to fight AND live. Not just for me and my family, but also for everyone else who has been diagnosed with ALS.
Although what awaits me in the future is scary and uncertain, there are two things I am certain of and that is God is Good and Love Always Hopes.
My desire is share the journey that awaits me through Love Always Hopes so that it may bring hope to a world that so desperately needs it.
"It is possible to wait hopefully for the future while choosing to live mindfully in the present." ~ Morgan Harper Nichols
Music Trandsends
Each week I'm finding new music that encourages and lifts my spirit. Some of my current favorites are You Hold It All Together by Maverick City Music and Lean Back by Capital City Music
This Spotify Playlist has more our shared favorites.
Writing Releases
Click Here for my latest blog post: Love Always Hopes Blog
Encouragement Helps
Have you read something moving? Listened to a good song or discovered a new artist? Laughed at something you think I'd love?
If so, please share it with me HERE.
Stories of Hope
Your story matters!
If you'd like to share your story of hope, joy, and goodness to encourage others click HERE.
How Can You Help?
Pray For Me and My Family: (from left to right)
Justin, our daughter Emily, my wife Suzanne, our daughter Laurel , and our son Gabe.
Respect Our Boundaries:
This is still really new territory for us, and while we are navigating it all, please be gracious. Trust that it's not personal if we don't respond to things right away, and we'll do our best to reply when we can.
Be Empathetic:
Empathy has no script. There is no right way or wrong way to do it. It’s simply listening, holding space, withholding judgement, emotionally connecting, and communicating that incredibly healing message of ‘You’re not alone’. ~ Brene Brown
Fighting Against ALS:
Check out the organizations below and consider donating to help them in their work to support ALS patients and continued fight to find a cure.
Love Always Hopes
1 Corinthians 13:4-7
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.
Join Team 'Love Always Hopes' in the Walk to Defeat ALS
Updates
February 2021
I recently had an appointment at the Emory ALS Center in Atlanta, GA where I met with Dr. Fournier and several other really superb medical professionals.
During this appointment she confirmed that my final diagnosis is ALS, but was able to provide some good news in that it's not bulbar ALS, which is a faster progressing type of ALS.
I will be starting occupational therapy treatments soon since I am, at times, experiencing difficulty with my hand dexterity (i.e., fine motor skills).
They're also coming by the house this week to install a breathing machine for me to start using for a few hours each night. This isn't anything to be too concerned with at this time as this is just a precautionary measure they want to take since the results of my breathing tests came back slightly lower than they wanted to see. The goal is to keep my lungs as healthy as possible for as long as possible.
Having this appointment and getting in at the Emory ALS Center was, and is, a real blessing to me and my family.
My next appointment at Emory is in about 3 months.
June 2021
Much has happened since my initial diagnosis and appointment at the Emory ALS Center earlier this year. I'll start by providing an update on my progression.
As of now, the progression of the disease is mainly occurring in my hands, arms, and shoulders. As a result, my ability to do things that require my hands and arms, such as getting dressed, showering, carrying and lifting things, writing and typing to name a few, are becoming more difficult to do without asking or help. It's humbling having to ask for help to do things that were once was so remedial. I'm not the best about asking for help, but I like to think I'm getting better about it.
Other than that I'm feeling pretty good overall. I'm still able to walk with little difficulty which is good since I've been blessed to do some traveling over the pass few months. I've taken weekend trips with friends to Asheville, NC and Charleston, SC, my sister and brother-in-law took Suzanne and I to Miami and the Florida Keys, and I've taken each of my kids on a trip. Emily and I went to Boston, I took Laurel to Portland,OR, and Gabe and I recently went to Montana and explored Yellowstone and Glacier National Park. This month (June) all five of us are taking a two-week road trip out to the Grand Canyon. I'm super excited and will post pics on Facebook and Instagram.
The month of May was pretty eventful. I started participating in a Phase 1 Clinical Trial that involves a series of lumbar punctures (i.e., spinal taps) over the course of several months. A "Phase 1" trial essentially means that the medicine or drug being used in the study is being tested on humans for the first time. The goal of the medicine/drug being tested is to either halt or slow down the progression of ALS. Thus far, I've had three injections and I've not experienced any major side effects. Participating in this study provides hope that progress is being made toward helping ALS patients live longer and ultimately, one day, a cure. My next injection is scheduled for late June.
Lastly, after 8 years and 3 months my time StartCHURCH officially came to an end on May 26th. I’m so thankful for my time there - for the all the people I worked with, for the work I was able to do, and for the life long friendships that I have made with some of the absolute finest people.
My company presented me with a plaque designating May 26th as “Love Always Hopes - ALS Awareness Day” at StartCHURCH moving forward. I am both humbled and honored by this amazing gesture.