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!!!