"I thank my God in all my remembrance of you." Philippians 1:3

I want to start this by saying that I am completely humbled by the amount of people who are praying and interceding for me and my family during this season. I am confident that God hears our prayers and that He has a plan that is being carried out. Thank you to all who are praying our family while we travel along this bumpy and winding road. We are beyond grateful.

I am still processing the appointment at Duke ALS Clinic and the way forward, but I wanted to go ahead and give an update and highlights from Tuesday's appointment as best as I can at this point.

My personality is more of an all or nothing personality. Through this ALS journey, I am learning that that might not always be the best practice. The information that I received back in August at the time of diagnosis was this: I've been diagnosed with ALS, I've got 3-5 years left to live, there are three medicines that may slow the progression, I can go get a second opinion and I can go to an ALS Multidisciplinary Clinic every three months to get the progression monitored. While that is disheartening to hear, I've also got to realize that ALS is a mysterious monster of a disease and most people really don't know how to address it or how to deal with the diagnosis. Unfortunately, from what I understand, this is the usual verbiage that goes with an ALS diagnosis. At my second opinion appointment and subsequent ALS Clinic visits at nearby facility, I didn't get much more information or much of a treatment plan.

Like I said, I am still processing and trying to understand the information from my appointment and the mindset of the team at the Duke ALS Clinic. I have come to realize that my perception and understanding of the things I learn now might be tweaked in the future. Hand in hand with this is the knowledge that there might be something that I feel I need to do now for my health but I might realize down the road I don't need to do it or want to do it. When you get a diagnosis like this, you hold onto, with a tight grip, anything that is of any hope that comes along. I am realizing that when things come along, I can't get too excited about them - I need to put it in my file, research it, bring it to the altar of God, ask people their experience, maybe even try it out and see what happens. I am confident that the Lord will weave the right pieces and people into my life so that He is glorified in this situation.

Here are some of the encouraging highlights from my Duke ALS Clinic appointment on Tuesday:

1. According to Dr. Bedlack, I am a slow progressor. There were three medications to help slow the progression of ALS but one has been taken off the market because it didn't have better results than the placebo. One of the two remaining medicines (Riluzole) can increase life expectancy by 10-20-25%. What I understood about this medication before Tuesday is that it may extend your life 3-6 months and it may damage your liver (which I need to be healthy to help me detox). But on Tuesday, this has been reframed in my mind - because I'm a slow progressor, I think I have more than the 3-5 years left that they told me initially. Let's go big and say I have 30 years left. If I take Riluzole, that will add 3 to 6 to 7.5 years to that 30 years. As for the liver damage, it happens in only about 1% of the people. I will be closely monitored and if my liver starts being affected, they will take me off of the medicine.

2. Dr. Bedlack is a conventional medicine doctor, but he is also researching, along with an international team of clinicians and scientists, alternative and off-label treatment options for ALS patients. This research is documented on a website called ALS Untangled. Here is this website: ALS Untangled®

This article does an excellent job of helping me understand the motivation that Dr. Bedlack has that is the foundation of his dedication in trying to figure out ALS and how to help ALS patients.
Faculty Spotlight: Rick Bedlack, MD, PhD | Duke Department of Neurology

3. Dr. Bedlack has been digging into ALS for approximately 23 years. Three of his team members, a speech therapist, a nutritionist and a social worker, have each been working at the clinic for 17-18 years. If you have seen or known anyone with ALS, it's a very difficult road to travel. For me, it speaks volumes to have a team dedicated with compassionate hearts to walk along people as they travel this road.

4. The thing that I appreciate about Dr. Bedlack is that while he is a conventional medicine doctor, he is not closed off to the alternative and off-label world. The way I understand it, I can try whatever I want and they will continue to walk through this with me. I need to let them know what I am doing so they can give their opinion (which is up to me to take or not) and they will continue to monitor me.

5. My next appointment is on June 11. The normal frequency of ALS Clinics is every three months, but Dr. Bedlack wanted me to come back in six weeks this time. I have my theories on why he wants me to come back this soon and one is so that Charlie can come sooner than three months from now. When I got my April Duke ALS Clinic appointment in December 2023, we were both planning to go. The next few months I wrestled with the hope suppressing language the neurologists had used and the hope producing words the functional world gave me - so much so that I wavered back and forth as to if I should go see Dr. Bedlack. Meanwhile, Charlie got an out of town opportunity to go speak about the Thai Cave Rescue. (See the link below for an excellent one hour long documentary about the rescue.) At the time, I didn't think I would go to the appointment so I told him to go to the speaking engagement. By the grace of God, when I decided to go, the Lord provided a dear friend who said she would take me.

Divers reveal extraordinary behind-the-scenes details of Thailand cave rescue | Four Corners (youtube.com)

I think this is it for the update, for now. I do have some prayer requests going forward along with some praises:

1. Pray for wisdom as I sift through all the medical helps that are coming my way, to know what I should engage in now, what I should save for later and what I should disregard.

2. Pray for wisdom as I go to a follow up appointment with biological, holistic dentist Monday to go over all the data they gathered on me a few weeks ago. I am looking into getting the mercury fillings taken out of teeth, getting my root canaled teeth cleaned or taken out and possibly doing something with the places where my wisdom teeth were taken out, if issues are found. I got the nudge Tuesday to either research these procedures a little more and/or do the procedures very slowly as to not put my body into shock. 

3. Praise the Lord that He has brought many people into our lives to pray for us, to make dinners, to go grocery shopping, to purge and organize our home, to help me decorate our home and to help teach and take care of our kids, just to name a few things. It is very discouraging to not be able to move like I used to and do the things I need to do to take care of my family. I am beyond grateful and thankful for the family of God, my sisters and brothers who are the hands and feet of Jesus.

"I thank my God in all my remembrance of you." Philippians 1:3