Last fall, October of 2018, Steve started to experience weakness in his hands and feet, started experiencing difficulty with balance and walking. After months of specialists, tests, etc., I am sad to say that as of May 2019, Steve was diagnosed with ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s Disease. It is a motor neuron disease that causes nerve cells to stop working, leading to muscle weakness, paralysis and eventually, death. No two cases are the same, so there’s no way to know how quickly this disease will progress. It’s also an incredibly rare disease.
Steve is working with the best medical team in Denver. Other than this disease, Steve is in great health, which does help.
Unfortunately, the progression of this horribly, cruel disease has been rapid.
Steve is in a wheelchair almost exclusively now. He does have the ability to get up from the chair, but only to transfer to another seat or bed.
He can still eat, but the act of eating is so exhausting he has no appetite. For this reason, we decided to have a feeding tube placed. The surgery was earlier today. Fortunately, it all went smoothly. No complications.
Steve is no longer able to take in the nutrition needed on a daily basis, so the feeding tube will remove that burden for him. He will still be able to eat when he chooses to, but this will provide him the nutrition he requires and will take the pressure off of having to physically eat many meals throughout the day and provide enough nutrition to make him feel good, hydrated, etc.
Giulia, Steve’s daughter, has been able to be with us since mid-December, which has been a blessing for us all. Not only has she and her Dad enjoyed special time together, she has been a tremendous source of help, love and support to me. I love her dearly and will miss her so much when she returns to Brussels, where she lives full time, in mid-February. Her employer is incredibly understanding of this situation and supportive of her working remotely while here in Colorado. The time we have all shared together has been precious, and a blessing, and we are all grateful.
Luca and Dominic know that Steve has ALS and see his rapid decline, but I don’t think they get the full picture and that is just fine. They love their Stepdad immensely and still smother him with hugs and kisses when they walk in the door. They have also been quick to jump in and help whenever needed.
To say we are heartbroken is an understatement.
We are trying not to focus on the sadness of this. Instead, focus on the great fortune we have had, finding each other in this lifetime. Our love has been a, “once in a lifetime,” and we are celebrating and grateful for that.
We are strong. We are each other’s greatest partners. We are not accepting of pity, but grateful for prayers and well-wishes. We are embracing of each new day.
I love you all and am grateful to have you in our lives.
This site is for our dearest friends and family members Steve and Rhonda. Rhonda will send a better summary of Steve’s diagnosis with ALS. In the meantime, this is an update from Rhonda to her loved ones... ”Just wanted to update you on Steve and the progression of this awful disease.
The physical decline has been rapid. He's in a wheelchair full-time now and we've made a few modifications to our home to accommodate.
Today, 1/14/20, Steve is having surgery to have a feeding tube placed. He is no longer able to take in the nutrition needed on a daily basis, so the feeding tube will remove that burden for him. He will still be able to eat when he chooses to, but will provide him the nutrition he requires and will take the pressure off of having to physically eat many meals throughout the day, but provide enough nutrition to make him feel good, hydrated, etc.
Please continue to keep Steve in your thoughts and prayers.”
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