It seems most of my head space these days is spent praying about and contemplating the pros and cons of potential options available to me. The reality is that there are a ton of theories out there but very few proven options.
Western/Conventional medicine can offer me two options at this point:
- Radicava – a medication that was FDA approved in the US in August. Radicava has been proven to slow the progression of symptoms in some cases of ALS! (PRO) It is administered through intravenous infusions -much like chemotherapy…(two weeks on, two weeks off initially and then 10 days on within two week period, two weeks off each month thereafter)…(kind of a CON ’cause it’s pretty consuming).
- Stem cell treatment through a clinical trial at UC Irivine. I applied to be a part of the study several weeks ago and they are conducting applicant interviews now. On the surface, it sounds quite hopeful with participants in previous trial phases reporting not only a slowing of symptom progression but also reversal of symptoms! (Super Big PRO) To participate in the study, however, I must commit to the 11 month study and NOT take Radicava. Risky because my functionality could change a great deal in 11 months and I’m not guaranteed the stem cell treatment as half the test group will be given a placebo. (CON) I’m simplifying it but that’s basically the gist. I don’t mind being a lab rat but is the risk of diminished functionality, physical effort, time away from family, etc, etc worth what I’d be getting (if anything) from the study? Hard to say.
Alternative medicine can offer me a variety of treatments to help manage the disease…not bad just time consuming and often expensive. (PROS and CONS to them all)
The challenge is to find a comfortable balance between getting caught up in the hysteria of all the proven and theoretical options out there AND getting caught up in a fatalistic attitude. Both extremes are paralyzing…finding a balance requires a conscious (and ongoing) effort to focus. It’s exhausting and, to be perfectly honest, my heart isn’t in it.
What I’m deliberating day in and day out are details related to disease management. For 8 1/2 years, our family submitted to an intricate system of disease management with Rudy and as I wrestle with the details of my disease and cry out to God for help, I’m discovering I don’t want to submit to disease management anymore. I don’t want to “treat symptoms”. I want a system overhaul…I want a system reboot…I want my nervous system to resurrect.
Let me be clear. I’m very grateful for conventional medicine, current technologies and the research & resources donated to get us where we are today in ALS treatment. I’m also very respectful of what alternative medicine offers people like me. I appreciate it, I’m doing due diligence in all areas and I’m engaging in the therapies that seem to fit me best but what I really want is for God to heal me this side of heaven. I’m sure some of you are saying “well, duh!” but it’s an involved and thoughtful process for me and the subject of miraculous healing could be a blog post of it’s own. I’ll share my thoughts on it sometime but for now I’ll just say I’m doing my due diligence in this area as well and seeking God for wisdom to truly understand what my options are and for discernment in determining what is best for me and my family. Will you please join me in prayers for wisdom and discernment in my process as well as the motivation to put on my big girl pants and do the necessary legwork? Thank you dear friends! ‘Grateful for YOU!!!
Rudy's Beat 
Continuing to pray!
YES! I will certainly continue to pray for you sweet precious Trish for the Lord’s wisdom and discernment as you go through this process and that you will certainly have the motivation to do all the things necessary to go the long haul. I love you! if there ever was anyone who “put on her big-girl pants” to do anything IT IS YOU!!!
Yes, of course I will pray!
Hi Trish,
I will continue to keep you in my prayers. I too believe that God can and does heal so I will be praying that for you as well! My big girl pants do not fit, you want ’em?
So much hard work for a tired heart. Will pray for miraculous strength and healing there too.
Always praying for you and your family and your Doctors for whatever’s is best for you! I love you and admire you!❤️🐶❤️
Yes, praying. Every morning I put the ring you made on and pray. When it sometimes snags on something (which is good) or gets stuck on a thread in my pocket (awkward) I pray. When I put lotion on my hands I twist the ring around, and pray. And at the end of the day I take it off and, yep, I pray. This little ring I bought from you at the SafeLaunch Fundraiser last year is a constant reminder to pray for you, and I do. And I will. Don’t know what He’s got planned for you but He is so smart and powerful and kind I know it will be good.
Your message to Trish has encouraged me also. Thank you.
“… so smart and powerful and kind…” Your words encourage me, too!
Praying praying with much concern, hope and admiration!! Love to you and your family, Marjorie and Joel
Love and prayers always
Dear Trish, I absolutely will continue to pray fervently with you my friend for wisdom and discernment. And prayers for healing from within and strength to process all the information. My heart goes out to you. You are not alone on this journey. May God’s loving arms embrace you and give you peace.xoxo
Trish,
Will continue to pray!
Cathy
I have been praying for you a lot lately and I don’t mind adding miraculous healing to my prayers!! That and divine guidance will be the things I will pray for you!!
All those choices are mind-numbing, Trish. Praying for wisdom, patience, someone truly knowledgable to help you process it all. You are carried by the prayers of so many, friend.
You have come a long way since your diagnosis. From confusion and anxious thoughts God has directed your words, thoughts and prayers in a way that can only come from Him. And we know without a doubt that He will continue to do this! Big girl pants and all, you are being led and fed by the Holy One who loves you unconditionally. You are also surrounded by all of us who love you and the Geyling team with all of our hearts. Continually praying for you dear friend.
I am joining you in prayer.
Father, my sister in Christ needs you right now. You know the intricacies of what is going on – far more than we will ever understand. You are all-knowing. And, you are also the ultimate Healer. At this time Lord, with my mustard seed sized faith, I bring Trish before you for healing. Lord God, I truly believe you can save her from this. And I ask you to act. I come to the cross laying down all I have to ask that you bring healing and health back to her. Please Lord. Hear our cries.
Praying sweet friend. May God’s perfect wisdom, courage, hope, tenderness, perseverance and strength fill you up to overflowing as you navigate these days and decisions. It seems like just yesterday you were zipping around in your 🍊 vw. That memory makes me smile 🙂
My continued prayers are with you as you seek wisdom and discernment Trish. As I listened to James talk last night about Jesus being our Wonderful Counselor…I prayed right then for you. Today I pray that “Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, ‘This is the way; walk in it” (Isaiah 30:21) Praying the Lord will guide you in all of this. Much love!
Trish, Joey and I are standing on the Word for your total healing from the top of your head to the bottom of your feet. In God ALL things are possible. Isaiah 53:5, I Peter 2:21-25
So many options, paths to take. Which to follow!?
Praying that God will make the way you are to take very clear, that you will find peace and comfort as you rest in His infinite wisdom revealed to you. Blessings on you and your family as you begin the journey before you.
Praying for miraculous healing, Trish!🙏🏼💞