Diagnosis addition: three speeds of ALS – fast progressing which normally starts in the upper body – not us! Slow progressing – which starts in the feet and is very slow in movement- not us either. Our ALS is fast but started in the feet. It can be slowed for 3 months with meds but it is insidious and shall steal her life. We hope in Christ to show the Drs that there is a God

We just received this note:

As you may have heard over the past 24 hours, phase 2 clinical trial results have shown that a new drug “slowed ALS progression in a statistically meaningful and clinically relevant way.”

The ALS Association, which supported the development of AMX0035, writes that it “could mean the difference between a person with ALS being able to feed themselves versus being fed, or the difference between needing a wheelchair versus not needing one.”

AMX0035 is an oral therapy dissolved in water and is considered safe. It is not available to the public because it has not yet undergone a phase 3 trial.

The ALS Association and I AM ALS have created a petition to ask the FDA and drugmaker to forgo the phase 3 trial and make it available to people living with ALS as soon as possible

The Journey continues. Spent a lot of time thinking this week about how we choose to live our time together. Celia announced that she has read a number of articles about survivors of ALS and the length of time they survive after being diagnosed. She said: “I choose to live 10 more years at least.” If survival was up to our will we would always choose more. Love that lady. We started to make long term plans based upon her desire for just a little bit more. 

Found that there is an ALS clinic in Ft. Myers and we signed up for it. A certified ALS clinic is place where a group of medical professionals plan a cooperative strategy of treatment for the patient and their family. They asked us a significant number of questions to get a lead on what we are dealing with prior to our meeting in September. We are so glad that they recognize the importance of treating the whole family and not just the patient. It makes a huge difference in the family dynamics. 

Modifications to our living arrangements continue. We have acquired more modes of transportation, installed more grab bars, modified our vehicles as we adjusted to the new normal. In just over a week we will be back in Florida to begin working with the clinic team. The final Dr appointment in WV is next week. 

In the middle of this all we continue to work in helping those we serve with transformational tools. Celia has taken on our Africa online class for training teachers with Murriell McCulley. She is in her element and is loving thinking through the materials that will benefit so many. I, David, continue to receive requests for help with internet based services. Grateful for the ability to work from where ever we are. Transformational Technology services like iClassrooms are making a difference. 

BTW – I plan to post each Sunday for as long as we can.

DavenCelia – your missionaries providing Transformational Tech Globally.

She told me 44 years ago that it’s until death do us part!! The anxiety and pain hit today and I imagine will hit again and again; “She is leaving me” not by choice nor by her own volition but it feels the same, she is leaving. How does one face that? I know grace and grace alone but today as I sat by the edge of the canal the pain of an unwanted yet anticipated separation tore my guts out. She is leaving me. I’m experiencing a loneliness that no one can cure even though she is not yet gone. I don’t know how someone handles divorce or separation. I just cry from my heart “don’t go!!” She can’t help it I know but that doesn’t change the issue. How do I help her with comfort in her leaving when she’s getting the better end of it all. She gets to be held by Jesus while we struggle to heal and accept her leaving. Such a day it is.