51/m with early onset of ALS / upper and lower motor neuron disease

Thank you for reading this! My name is Will Salberg and this is what is going on right now.

I have been diagnosed now with ALS. Ugh. Now what do I do? I'm being seen at the University of Utah's Neurology Clinic which is probably the best place for me to go right now. The problem is it's about a 2 hr drive that takes me closer to 3 because my muscle fatigue effects my driving. I am going to physical and occupational therapy right now. PT is 2 times a week, OT is once a week for now. That is a little closer and I look forward to the walks to and from the hospital because it helps me get out of myself and get a fresh perspective on things. I have a lot to be grateful for. I'm really thankful for all of the help.

I'm hoping to hear back about my disability claim within the next month or so. I have an appt with the Dr in Pocatello on the 23 and I guess until then I am just going to keep moving forward to the best of my ability. My biggest concern is paying for my meds right now. As soon as my disability claim goes thru I can start the process of getting on Medicare but until then, my meds are pushing about 450 a month. Im using good Rx and driving to Logan to get them as this is the cheapest I've found for all of them together.

On the 9th of this month I have a full nerve study in Salt Lake and hopefully after that I can get a better grip on what I can do regarding all of this. Thank you so much for your prayers and help as I navigate this difficult chapter of my life. I am constantly drawn to the advice found in Jer 10:23. Basically, it isn't up to me to direct my steps. It is up to God alone and he will provide for me what he knows I need. My goal is to remain as independent as possible right now. My main needs revolve around being able to pay for my medications, my medical equipment and my medical bills for last month and this until my disability kicks in. Thank you so much because anything helps!

Anyway, I always believe in complete transparency and I am always willing to talk to anyone about this. I appreciate all of the love and support that has poured out on this and I'm really grateful there is a stopgap like platforms like these that allow me to reach out to others. Thank you for making a difference.

May God walk with you.