My Faith Journey With Primary Progressive Multiple Sclerosis
How reaching out and 'coincidences' have led to change since a diagnosis
After being given the most life-changing, devastating news I’d ever heard — “Mr. De Marzo, you have textbook MS. As a matter of fact, you have PPMS [primary progressive multiple sclerosis].” — the emotions and pictures that ran through my mind were vivid, horrific, angry, and upsetting, to say the least. What? How? Why? These were a few of the numerous thoughts that ran through my mind. I didn’t know how I’d cope.
I grew up in a multireligious household without a defined path. We were encouraged to discover our own way and journey wherever that might lead.
After my diagnosis, I experienced a series of thought-provoking encounters. The first involved a pastor from a local church. I wanted to learn how to pray the rosary because I believed it was a powerful prayer that could help me understand what was happening to my life. This pastor told me not to pray the rosary, but rather to pray as if I were speaking directly to God. We prayed together for me to have strength and accept guidance in this life-changing time.
It was an emotional and spiritual breakthrough for me.
After that experience, several customers of mine who have deep faith and conviction came to my farm to see how I was doing. We all formed a circle and prayed. These were powerful moments; my emotions were on full display.
Throughout 2021, these impromptu prayer sessions with complete strangers happened at least four times. I started believing there was a bigger player involved, and I found this belief to be quite comforting.
In mid-October, a church with which I’d never done business came to the farm and asked me if I wanted to include the farm as part of its Halloween scavenger hunt. The pastor listened to my story of living with MS, and he prayed with me. This prayer session stirred me to wonder about these interesting coincidences.
But actually, there are no coincidences. Follow the crumbs.
In November, I crossed paths with another pastor, who led a Baptist church in a town close to mine. We had a conversation about vaccines, my condition, and the Gospel. I was fertile ground because I was searching for how I could and should be dealing with this diagnosis spiritually.
The Sunday after that meeting, my wife and I attended our first service at Bible Baptist Church. We haven’t missed a service since.
The height of my faith exploration came when my sister-in-law became extremely ill. All of my physical issues were put aside as my focus became her. I prayed daily for her well-being and looked for ways to help. My prayers were answered through subtle and random opportunities that had no other reason to be there except to direct me down a path. Follow the crumbs! My faith and my belief were growing!
I find reading and listening to the Gospel to be very powerful and comforting. The Bible is filled with references to the daily life struggles we all experience, which I never knew existed. One guest pastor discussed some of the everyday challenges we go through and asked the congregation, “What does God teach you about struggles?” Patience! Slow down! Make time for faith, family, and friends.
Pre-diagnosis, my life was ruled by the clock since plants don’t care what’s going on in the world. I tended them 24/7 and made no time for church or prayer. In a roundabout way, this disease has given me patience and time I’ve never had. This led to a renewal of my faith.
I’m a novice in this arena, but I know it’s OK to dive deeper into my faith. It offers me great comfort, answers my many questions, and can assist in removing burdens that encumber me. My journey continues.
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About the Author
MELISSA MOXLEY
AMEN BROTHER!
Your story is beautiful and I am so blessed to have read it.
Layne Larsen
I enjoyed Stephen’s article about his PPMS diagnosis and his finding his path with God, and it helping him deal with this horrible disease. I too have been diagnosed with PPMS in 2016. I have lived with its symptoms for several years. I have to admit I felt devastated and depressed for years and resented and blamed God for it. I’m now finding hope and comfort in HIM even though I have not turned to any particular religion. I have a personal relationship with Christ, but it would be nice to fellowship with others of faith and have a prayer group. I do believe in the power of prayer!
Jennifer Sieb
Hi Stephen - I'm so sorry for your diagmosis. I was diagnosed with PPMS in April of 2021. I have had 1 full dose of Ocrevus - the 2nd one coming up in November. Currently, my symptoms are bad balance and weak legs. I am also on Dalfampridine - the generic of Ampyra, to help with walking speed. Not noticing any help with that. I would rather have help with walking gait rather than speed. Are you on anything to help with walking?
If you don't mind, could you tell me your symptoms and if Ocrevus has helped you. For me, after the first dose, my MRI showed no changes from the year before. It is my understanding that all MS meds don't improve your symptoms - just keep them from getting worse. Do you agree?
Gary Pardue
Hi Jennifer! I have PPMS and was diagnosed in 2015. I lost my job of 27 years in May of 2016 because I feel like they didn't want to pay for the expensive medications that I was going to be place on like Ocrevus. My Doctor prescribe Ampyra for me as well to help with my walking. I took the generic form for about 3 months and had to stop it because it was making me sick at my stomach + it wasn't making a difference in my walking anyway. I have taken a round of physical therapy for my walking which has helped some. It will only work until I get tired and my foot begins to drop/drag and I just have to sit down. My general ability to get around has really changed. If an activity involves much walking then you can count me out. Good Luck & God Bless!
Gary Hendricks
Jennifer, I first noticed significant fatigue walking the golf course. I was finally diagnosed with PPMS in 2017.
Dr began prescribing different meds for different symptoms.
Amantadine – Fatigue
Baclofine – Spasticity
Modafinil – Fatigue
Dalfampridine (Ampra) – Walking Assistance
Ocrevus – Slow down disease progression
I did not start them all at the same time. At times I have skipped certain of them and have noticed subtle differences. I have no negative reactions to any of these and have great insurance so I have just kept up with all of them.
My MS has continued to progress. While I can still walk (if you want to call it that), I do not do so without a walker (and not very far or fast). I have a Zinger chair for distance and speed and I am using it more and more often. I try and do MS GYM on a regular basis and notice more challenges when I miss a few days.
I did not notice any significant change after first going on Ocrevus. The Dr reminded me that it’s main purpose is to slow down progression. How do you know if it is working? I hate to think of where I would be without it. Dr says MRI shows no new lesion. However, I still feel my MS is progressing. I have noticed over the years that I feel much more exhausted in month 6 after infusion (I have heard this referred to as the “gap crap”).
Keep the spirits up and just keep on keeping on.
Molly
I too have PPMS. 66 y.o. Female.
I had Ocrevus infusion twice. Third infusion was halted due to a slight tightening of my throat. I take generic Ampyra. Which helps my legs not feeling like concrete. I walk with a cane when out and about. I enjoy reading how other people cope with PPMS. My dr. Has decided to halt Ocrevus. Has recommended Evushuld inoculation.
Please keep posting.
Camille Andriunas
God Bless You Stephen!!! I can't imagine going through a life with MS without God. I go to church, a bible study and pray often.
Tom Anderson
Hello Stephen- If you need to cope, perhaps a psychologist could be more effective. There are some MSr's and others who swear by the placebo effect, but I wouldn’t bet the farm on it. Hope you find what you’re searching for- peace of mind, a sense of fairness, control, empathy? I think you have a ways to go and I hope religion is not the end of your road trip. You are smarter than that. Also, these religious people sound innocent but you never know. They never met “God”, and they are human just like you and me, with all the good and bad stuff going on.
Maureen Brennan
Dear Stephen I was diagnosed with PPMS in 2016 I was 68 and a school bus driver for handicapped children for 26 yrs. Eventually could no longer do the job so I took my retirement. Thank God I always knew Jesus as a child so I am truly blessed. I have a wonderful family and friends and support system. I concentrate on the things I can do and not on the things I can’t do. I try to keep a positive attitude and to be as cheerful as possible. It’s a hard road but I know that my faith will carry me through. I am not on any drugs except for spasms and back pain. I live on my own …. do my own cooking but have a cleaning girl every two weeks. I take everything as it comes now and try to live my best life. I wish you the best of everything Stephen and try to enjoy your life to the fullest and never quit.
Sheila
Stephen, It was a joy to read your article. Your words were filled with sincerity about your personal journey. As believers, we begin to understand that for those who know Jesus Christ and believe in God, the challenges of life take on a different meaning. We have hope that others do not have, and that is a gift and a blessing!
Glenda Shine
Stephen, Your article really blessed me. I was diagnosed with PPMS in 2011. I was raised in a Baptist church. God bless my parents for raising me in faith. We were church attenders through the time of raising our children. After they left our home, our church attendance faltered though I continued reading my Bible, I listen to the Bible study “Thru the Bible” nightly on my iPhone and that has expanded my knowledge of Gods word exponentially. I am physically unable to attend church now and I miss that fellowship terribly. I am JC virus positive so I am unable to take that new wonderful drug. Our stories parallel as we just went through caring for my Sister in Law through her journey with Bone Cancer. We sat with her,praying for her, as she drew her last breath, just a month ago. I shake my head at the comments of Tom above. I wish, as does our Lord God, that everyone could “know Him”. I will pray for you faithfully as well as Tom, that both of you will feel the presence of God in your lives daily. My relationship with Him has developed into an unshakable faith for which I am humbled by His love. God bless you and hold you in His hands.
Gary Hendricks
Stephen, thank you for sharing some of your "Faith Journey."
Don’t be distracted by others skepticism or lack of faith. My faith too has been much strengthened as I have waded through this mortal challenge.
One of the things that has sustained me at times is to continue to remind myself to maintain an eternal prospective. This mortal experience is just a short part of the grand eternal plan of our Heavenly Father.
I wrote an article that was recently published which helped me through my early diagnoses’ days.
https://www.churchofjesuschrist.org/study/liahona/2022/04/digital-only/multiple-sclerosis-and-my-testimony-of-jesus-christ?lang=eng
Keep the faith brother.
Stephen De Marzo
Thank you for the link! It is an incredible artical! Yes my faith is growing I do not, will not be deterred by others. This journey I am on is no less amazing. Your article moved to tears says more and deeper then mine. Well Done.
Eileen
Stephen you have done it again for me, reading your posts feels like I am talking to an old friend, thank you. I have not sought out religion as a way to help cope with my PPMS diagnosis 13 years ago, but I might give it a try, since, although they help, mental health professionals have not found a way to quelch the ‘why me’ questions and the sometimes depression.
For those of you just starting your journey with Ocrevus, I have had regular infusions every six months for several years and before O I had Rituximab infusions. And no, they have not cured me, but they have in fact, I believe and so does my neurologist , slowed down my progression considerably. Although I am in a wheelchair, I am still a very active person and am about to take on a big house modification and am so looking forward to it.
Stay active, seek guidance, find the best ms neurologist you can, don’t just accept, actively engage with others and eat healthy is what I recommend, since we can’t beat it yet, to really LIVE with it. Good luck to all.
Ryanco Concrete Construction
Thank you for sharing your deeply personal journey with Primary Progressive Multiple Sclerosis and how it has intertwined with your spiritual path. It's inspiring to hear how you've found strength and comfort in faith during such a challenging time. Your openness about discovering patience, embracing new perspectives, and the unexpected connections you've made through prayer and community is truly moving. Your story is a powerful reminder of the resilience and support that faith can provide.