For USA MS Awareness Month 2024, we are focusing on the importance of hope. Community member Bill has written a heartfelt and touching letter to the Overcoming MS community, to share his story and message of hope. Bill has overcome many hard times, but his positive outlook and determination are truly inspiring.
Hello to the entire Overcoming MS community! This letter explains how I’ve come to where I am with MS. I hope others can find something here within themselves and for themselves.
My diagnosis was in May 2023 at 61 years young. To say it was shocking would be a true understatement. However, I am genetically predisposed, as my mom, who passed away at the age of 68, was diagnosed with MS back in the late 1960s and two out of my four sisters were diagnosed with MS in their late 20s/early 30s. When they were diagnosed, there was not enough known about MS, nor was there much in the way of good medication or information as to how to deal with this disease.
My two other sisters and I were spared the MS diagnosis during that time. I have no brothers and am the youngest of five – yes, that was quite the adventure having four older sisters, as I’m sure many of you are thinking, but that’s a very different story, with many laughs!
At the age of 45, the auto-immune gene decided that it was my turn! As a very active father of four, business owner and then long-distance runner, I was surprised one day to wake in the middle of the night to the most gut-wrenching pain in my belly that I’d ever experienced. After eight days in the hospital, I left with a Crohn’s disease diagnosis. I dealt with it for 16 years without really changing my lifestyle. I did, however, keep running and was up to running full marathons which definitely helped reduce my stress.
Years later, enter my beautiful Maria, that one-in-a-billion meeting of two people who probably should never have crossed paths, yet somehow did. She was hands down the most positive, optimistic and open-minded person that I’ve ever known. Along with my mom being positive and upbeat, I’ve crossed paths with some amazing people in my life!
Over the ensuing months, to say that we fell head-over-heels for each other would be an understatement. We should have been listed in Wikipedia under the definition of true love! The kind of unconditional love that knows no bounds and is open to all aspects of life – exploration, wonder, questioning, optimism, care, laughter and anything else we could find together. We enjoyed a happy journey of countless excursions, hikes and trips, visiting her family in Spain and belly-laughing like nobody else I know.
Maria had beaten breast cancer five years before we met, and sadly one day we were told her cancer had returned. Time stopped and we struggled through those first moments, but in the next few weeks, as we slowly regained composure, it was all about beating that disease again. What astounded not only us, but her doctors, was that she felt incredibly, physically fine! Love and laughter really can be such miracle medicine. Maria had been a vegetarian since her first round of cancer and she never stopped moving and exercising! Those helped keep her symptoms far from the surface.
This is where I want (hopefully) anyone reading, to grab some tips that might help them. Maria never complained – she chose to look forward, she chose hope and she was determined to live the life she wanted for as long as she could.
The next paragraph after this one isn’t meant to be a step backwards for anyone – please don’t take it that way. Instead, take her message of living life to its fullest, do as much as you can, for as long as you can, with hope. Don’t allow that chair or couch to pull you back – get up and try, life is a gift to live today!
My Maria passed away in April of 2022. Like my mom, our last few conversations were always filled with laughter and not despair. In April of 2023, on the anniversary of her death, I visited her hometown and along with her family, we walked and hiked with her in our hearts to places we knew she loved. On that trip, I kept a secret from everyone, one even I didn’t know the meaning of: my right foot was acting ‘funny’.
I felt quite stressed and grief-stricken over that past year and upon returning home, my symptoms quickly grew worse. I was soon off to many doctor’s appointments over the next few months. From a primary to an orthopaedic, to a spine specialist who finally arranged an MRI, to seeing a neurologist, to confirm what they suspected to be MS. Weeks later, a brain MRI and lumbar puncture confirmed this. I have Primary Progressive MS. At age 61, I was not spared this disease after all.
My symptoms were developing rapidly: my neck hurt, and I had ‘Lhermitte’s sign’, that wonderful shock sensation that happens when you flex your neck. The sun was now bothering me, and the fatigue was brutal! My feet were now both on fire, along with numbing and tingling feelings and both legs felt like they weighed twice what they were supposed to. It was all happening fast.
I dove headfirst into understanding much more of what I already knew about MS. But this was 2023 and we’ve come much further along with treatments since the 60’s, right? Well, yes and no. The MS community has made many strides, but we all know that MS has no cure yet. There are much better treatments today for RRMS, but so few are available for PPMS. This news hit me hard, but there has been progress, for which I can be grateful. I chose to take Ocrevus infusions, with the knowledge that it can work for a small percentage of people with PPMS, and I hoped that would be me.
Within two months of my original diagnosis, I found Overcoming MS. But before I locked in, my crazy personality (along with many years of research responsibilities for my career) needed much more verification first. Many articles came back to the Overcoming MS website and, every time I’d find another interesting study, sure enough, there was Overcoming MS! Article after article and study after study all seemed to point towards the Overcoming MS website.
Professor George Jelinek, along with his posse of arduous, studious staff members, have combed through years of studies and research from all over the globe to combine lots of rich resources into one science-based, well-documented plan of attacking MS! I knew I had found what I needed to do to help myself. I certainly would try!
The pillars that encompass Overcoming MS are well-researched, as I mentioned. Many of these will come easier for some, but not for others. I am no different, I find exercise to be much more a part of my existing lifestyle and therefore easy to keep going. Some of you may need encouragement, ask for it. You may need to find something, anything to help you to modify your diet, try!
Make sure you get your Vitamin D intake via supplements or plenty of sunshine. This pillar should be easier for most of us, I use the early morning hours of the summer to get many outdoor activities and chores done – I love mornings!
Mindfulness, meditation and stress management – I am giving this pillar everything I’ve got. My sincere want and desire is to be rid of stress and help myself. I know the power behind this is well-documented and factual. None of us are perfect, we all have our baggage to carry and we’re all different. In time, I hope, as I wish for all of you, to try to live forward and not allow MS to dictate our lives.
I mentioned previously that I was battling Crohn’s disease and had to self-inject twice a month. Well, those injections run afoul with MS itself, and worsen the disease! Yikes! Both my neurologist and my gastroenterologist agreed that I had to stop taking them immediately once I was diagnosed. But what do I do for my Crohn’s? My doctor told me that if I “restricted my diet”, I’d be okay for a couple of months until he could offer a treatment.
Did you catch that line in the sentence above? Restrict my diet!? Well, guess what everyone – I’ve been Crohn’s free and treatment-free for 10 full months. The last colonoscopy revealed no evidence of disease! Why? Because of my strict Overcoming MS diet, that’s why! And my belly feels great! Thank you, Overcoming MS! Woohoo!
Please, take one thing from all of this: You have to try. Life is THAT amazing when you believe in your heart, that each and every day is a gift. Only we, ourselves, can see life as trash or a treasure. Tossing ourselves in a chair or couch like we’re not worthy of the gifts that are outside is not why we are on this planet. Look outside or look at your families and friends and at each and every day itself, like a treasure meant to be found and looked upon with open eyes and smiles.
Be grateful for the smallest of things: the smell of the breeze, the colors of the flowers and the busy-looking streets of crowded cities which can be so fascinating to watch. We all must try to find life as a gift!
Always continue to move onto the next day ahead, live and hope for better things for yourself. Within hope, comes desire and will. One day at a time, one step at a time. Life is NOT over! MS may be something that confines and pulls you down but each of us has a choice as to whether to keep going or not. My journey, and the journey of those of you who are reading, is not over, but each day is a new day. My past has led me to be here in this moment, writing this to all of you who might find some strength in these words. Take this new day and start to take one new step forward.
I’ve been through dark days and I still have them, sure. But those days are few, and I hope they’ll become fewer as I stay on my Overcoming MS path and enjoy my family and friends and making new ones within the Overcoming MS circles. Try. Hope. I know you can!
Thank you, to all Overcoming MS staff and members of this community.
Very sincerely, Bill
