So glad you’re here! Heartfelt appreciation to our daughter and son-in-law, Laura and Jarrod, for sharing their expertise in designing this website from their home in Chattanooga, Tennessee.
Thank you for your concern expressed through emails, texts and cards and for your prayers. An appreciable decline in stamina makes it difficult for me to keep pace with individual emails and text messages. My hope is you’ll return here for current news and personal reflections. You’re welcome to email or text me but no promise you’ll receive an individual response.
With amyotrophic lateral sclerosis (ALS, aka Lou Gehrig’s Disease), it’s all about conserving energy. In July 2017, a nearly imperceptible slurring of my speech emerged. I was the first to notice. After numerous appointments with medical professionals locally, University of California Los Angeles (UCLA), and Forbes Norris Clinic in San Francisco, we finally received a definitive diagnosis of ALS in July 2019 from the ALS Center at University of California San Francisco (UCSF). This disease is commonly very difficult to diagnose. Although it is not the outcome we hoped for, we are grateful to have the ailment clearly identified.
My endurance used to be quite good. Now I suddenly lose steam and must rest. Imperative. Talking is becoming more difficult and quickly saps my limited strength. Many years ago, my father drove a Volkswagen bus that was not designed with a gas gauge—it was equipped with a reserve gas tank. One summer in the late 1950s while on a family vacation, we were driving on a remote stretch of highway in Idaho when the engine suddenly began sputtering. Without a trace of concern or panic, my father sported one of his famous grins and said, “The bus is out of gas.” He nonchalantly reached down and turned a knob near the floorboard, opening the reserve tank. We continued our trek down the highway keeping an eye out for the next gas station. I could use a reserve tank like that!
As a married couple for over 42 years, Jon and I have been blessed far beyond what we deserve. So many challenging, humorous, and exhilarating memories. Without doubt, this is the biggest hurdle we’ve faced together. Jon is my priceless gift from God. He is doing an impressive job of helping maintain order in our lives and home. We’re managing to keep on keeping on. Almost daily we find something amusing to laugh about—helps maintain our equilibrium through a tough, unplanned journey.
So privileged to join this circle of love and faith. ‘Tis clear that you and Jon are keeping the two nourished, and the humor to boot. Your report is both moving and a testament to living each day to its fullest and the importance of teamwork in a happy, married state.
I can feel the sapping of stamina, and the struggle to find energy and your heroic effort. Your prudence in guarding that same strength is paramount, and may we all respect it. Know our vigilant prayerfulness for you and the family. Thank you to your daughter and her husband for structuring this site. What a beautiful frame, with the dear hound keeping watch over your home front.
Much love, Genevieve and Dolfi
Oh dear Genevieve, we love you and Dolfi. Thank you for your friendship, warm thoughtfulness, and prayers.
I’m so glad that you decided to have your daughters help you establish this website. It will make communication with all your friends that much easier. May the Lord sustain you and Jon each day, and continue to bless you with pleasant memories of his goodness.
Thanks so much, Chris, for your words of encouragement and invoking God’s blessing.
Leslie, thank you so much for this explanation of your new normal. We have always heard about ALS and known one or two who have had it. We are sorry for your loss but strengthened by your courage and candor and determination to make the best of a bad situation. Thanks so much for sharing. We look forward to following your journey, praying for you and Jon, and being strengthened by the discipleship you are demonstrating. I hope we can get up to see you soon.
Love Jerry with Marilyn
Thank you, Jerry, for your love and encouragement. You and Marilyn are such an inspiration.
This is very cool. I love the story about the truck’s reserve tank. Wouldn’t it be nice to have that. Your positivity is a great strength. Let me know if you want a visit or want to take a drive.
Thanks, Karen, for your vote of confidence and your offer of help. Your thoughtfulness is so appreciated.
Love this! Great job. So nicely done and thoughtful for those who want to know how you’re doing.
Thank you, Algis. Hoping and praying this site will be a success.
What fabulous picture of you and Jon. Thank you for taking us on this difficult journey with you. Our prayers are with you and Jon. And thank you for including me in your hounds by the sea blog.
You’re welcome for being included. Thank you, Monique, for your encouragement and your prayers. Truly means so much.
This is a great site – huge shout out to Laura and Jarrod for spearheading this. Looking forward to seeing you in a couple of weeks, bringing along a sweet treat (compliments of Granny). Love you!
Thanks, Julie. This site would have been a mere figment of my imagination without Laura and Jarrod. Very grateful for their willingness to use their combined skills on my behalf. Looking forward to seeing you, as well.
Love the picture of both of you, and thank you for sharing your story. Seems like yesterday when we were homeschooling together ❣️
Thank you, Vicki, for your kind comments.
Beyond happy for this. Your portrait with your husband makes me smile. Laura and her hubby did a great job. All love!
Thanks, Dane, for checking out the site and for your encouragement! Means so much.
Leslie, Thanks for being vulnerable in sharing your story. As I’m on the same journey with Ned I understand your energy level. This is not a journey I enjoy sharing with you but nonetheless, we are sharing it. Thank you for reaching out to me and for your prayers. I’m grateful we do not have to walk this journey alone.
Thank you, Bonnie, for your understanding. No one facing ALS took courses to help them prepare for such a diagnosis. So glad we’ve had opportunity to meet and encourage each other. Praying for you both.
So glad to hear how you’re doing. I still treasure our time together last August. Thanks for starting this blog. I know how important it is to keep family and friends informed without repeating yourself.
Good to hear from you! So pleased Laura and Jarrod have given wings to my wish for a website to keep people who care, updated. It’s even better than anticipated.
Leslie
I’ve been blessed to have met you through my mom who passed of ALS this April 2019. I’m here for anything you, your daughters, and husband need since I’ve walked out this journey with my sweet momma. You’re a strong lady my friend.
Dearest Rochelle ~ Thank you for already sharing so much helpful information gained from personal experience during your loving mother’s recent battle with ALS. It brings me comfort to know that you’ve made yourself so available to us.❤️
Leslie Sands, I just heard about your diagnosis and am praying for both you and Jon as well as your family. It’s so great to know that Jesus doesn’t send us out on our own, but comes along with us. Ken, my son, used to say there is no such thing as a day, there’s good days and there’s better days. I always loved that. This is sent with love and continued prayer. Marge Claassen
Oh dear Marge, how absolutely wonderful to hear from you. So glad you found my website. Thank you for taking time to post your comment. I love what you shared from Ken whom we remember so well. Puts some additional wind in our sail. Thank you for your love and prayers. Special blessings sent your way❣️
What a beautiful way to stay connected ! You and Jon are an inspiration!
Thank you, Chuck.
Hi Leslie,
I received a picture that was shared by Nancy White of you and me on the beach at Huntington Beach. Wow, does that take me back! What fun we had taking trips down there and so many mission trips.
I was saddened to hear of your battle with ALS but have been encouraged by your strong faith, and you are an inspiration! It would be an honor to follow along with you and to pray for you on this blog. God bless you, Leslie.
Mary Anne Roess (Bryant)
Dear Mary Anne ~ What an unexpected and completely wonderful surprise to read your message! So glad Nancy shared my blog with you. Thank you for your encouraging words, but most of all thank you for praying. Truly, heartfelt prayers to our God are the only thing that keep me going one more day. ALS is a very frustrating disease.
Praying for you dear friend. I was happy to hear Liz and family are here as well. I hadn’t realized Sara Loven was a mutual friend until this weekend. Psalm 91 was especially appreciated this morning. Be encouraged in your spirit as eternity together is going to be awesome. Love you ❣️
Vicki ~ Thank you so much for your vital prayers. Yes, we’ve known Sara for maybe 30 years. It is very special to have family visiting us! Love you, too. ❤️
Hello Leslie! Although Liz and family and I weren’t able to meet in person the other day, I was able to chat with her via phone! I’m “catching up” with you and Jon by reading your blog…I’m bummed to read of the ALS dx but am likewise encouraged by the grace and honesty that you express in your blog. So much grace! ❤️
Our prayers and love are yours and for your daughters as well.
I hope that I will be able to see you and Jon at some point to make contact, even if it needs to be from 6’ away!
Much love! ❤️ And a virtual hug
Lisa ~ So good to hear from you! Thank you for posting your gracious comment and for your prayers and love. 🙂