It may only be one life with multiple sclerosis, but it’s mine
If my EDSS score continues to rise as it is, the next decade won't be a good one
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I’m drowning.
Well, not literally. I’ve never even come close to actually drowning — not even with last year’s pneumonia and the occasional aspiration of liquids.
I’m just using it as a metaphor because it seems fitting and I know how much everyone likes metaphors. It may be a little on the dramatic side, but metaphors (especially mine) can be like that sometimes and, to be honest, it’s how I’m feeling right now.
I’ve written before about the benefits of a healthy rant, and while I choose not to do it here very often, I genuinely feel like having a good one today. Like everyone with multiple sclerosis (MS), my definition of the word “fine” may have become quite flexible, but I haven’t felt fine recently. Instead, I feel like I’ve been in the deep part of the ocean for years with no flotation device and I’m running out of the energy to tread water.
How’s that for overly dramatic?
The substance of my rant
I’m currently an 8 on the expanded disability status scale (EDSS), quickly heading for an 8.5. I realize those are just numbers and I could stabilize, and never move from here. I am also keenly aware that I have gone up 1 point every five years since my diagnosis and, if the trend continues, the next decade will not be kind to me. That’s why, when well-meaning people tell me to be patient and keep treading water because the next big thing will be here within 10 years, I can reply that I may not have 10 years to wait.
There are clinical trials for disease treatments and therapies offering symptom relief, but my EDSS score makes me ineligible. I understand why I wouldn’t make a good subject for a study, and that there is more risk involved for someone at my disability level. It’s a catch-22 that as my disability level increases, so does my willingness to accept the same risk that my advanced MS keeps me from being able to take. The benefit of a therapy must outweigh the risk, but my idea of what it means to outweigh has become as flexible as my definition of “fine.”
Most of the people I rely on for medical advice and treating this illness are not drowning. They’re not in the water at all. That’s the way it should be. I count on them to be rational and objective in all the ways that I can’t. At the same time, I rely on them to understand why a life preserver that will only buy five years and is made of a material that might cause a rash is still very attractive to someone in my condition.
I understand that my current disease-modifying therapy, Ocrevus (ocrelizumab), is the only one available for primary progressive MS. Per lab work, my B-cells remain depleted between infusions and my MRIs haven’t shown any new lesions or enhancing ones since I began therapy 10 years ago. The medication is doing exactly what it is supposed to do and may very well have bought me some time, but I’m still drowning.
Approximately 2.9 million people in the world have MS. Most are not in my condition, thankfully. There are some amazing things coming and a great many people will never have to tread water like me. There is a very good chance that future generations will never have to deal with this disease at all. When I’m not ranting, I tell myself not to be selfish, that it’s just one life out of almost 3 million. But it’s my life.
OK, the rant is over. I hope someone benefited from that as much as I did, even if the takeaways are only that I’m human and I needed to let that go. Thanks for listening.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Ian R
Ben, you’re heading up the EDSS fast because you’re working too hard. I’m giving you the rest of August off and the first half of September. In the free time I’ve given you, do 30 arm curls a day on each arm, read your bible, watch all the Alien films. You’ll feel much better as your self imposed target of one article a week is too much. Enjoy the rest of the summer. Ian
Heather
Thank you for your beautifully written columns. You always put into words that express well the challenges we face with MS. My EDSS score based on mobility is probably 6.5-7 using the descriptions. Mobility being my most significant symptom. Over the years it has become increasingly difficult and I use a wheelchair all of the time. I rely on help for many things now. But outside of that I feel the EDSS score is lacking. It does not take into account a mind that still works, eyes that can still see, ears that can still hear, smells that can be taken in, words that can be spoken,… The perks in our life such as it is. Finding “micro joys” is not always possible but I try hard to seek them out.
Benjamin Hofmeister
You're right Heather! Patient experience, or lived experience needs to be considered as well and a thorough neurologist should definitely take it into account. For example, I am not confined to bed because my wife is a nurse and can transfer me. If I didn't have family support, I would have to spend most of my time in a bed and would probably have a different disability score.
Jim P
This more of a ? for Ben . I too am PPMS and my current score is 6.5. Dx in 2021 in the thick of Covid. I live in Northern Ontario Canada , and we have cold weather 6/12 months . My question , have you noticed living in Alabama has helped at all due to the warmer weather .
Benjamin Hofmeister
Hi Jim, unfortunately no. The heat and humidity are a bad combination for my fatigue. Winter is mild, but I definitely prefer the cooler weather. It saps my energy too, but not as quickly, or as badly.
Meeya
Dearest Ben,
it´s good to see that you´re also just human, like the rest of us... but I sincerely hope that sending all our good wishes your way will somehow help you get back out of that whirlpool that´s threatening to pull you down in spite of all your treading water... (lovely metaphor, by the way, as always :-D ).
You´re doing one hell of a great job there, and I forward many of your texts to my darling husband (= also ex-military background; he loves all your references to and metaphors from your military training!!).
Big virtual hugs from across the ocean, and our best wishes,
Meeya
Benjamin Hofmeister
Thank you so much Meeya! Tell your husband that I received my Fallschirmspringerabzeichen in 1997 and didn't have a chance to be afraid on that jump, because the German jump master practically pushed me out of the plane.
Nancy Bergstrom
Beyond ironic when cancer patients can sometimes get cutting edge treatments with extreme cases. Why not MS patients? Beyond my comprehension. Hoping you can get some cutting edge help.
Benjamin Hofmeister
Thank you Nancy! I have explored the right to try Avenue and always get dismissed because MS is not life threatening. I understand, I really do, but I'm going to keep trying anyway.
Tim c
I was diagnosed with ppms in 2018. Im still a newbie i guess.
I am very upset with the disease, research everything!
Ms has been around for 50 years or so. What has been accomplished? We have physical therapy. Yay. Does that make my left side work? NO. We have multiple treatments for rrms.
Ppms. We have dmts. Things they only say SLows progression. Just another mri we have to sit through to tell us that we have no new lesions but your disease is progressing just fine.
Or wait. A new molecule was discovered that MAY play a roll. 30 yrs later. Nope.
Can we ever get an answer other than maybe or it might?
Benjamin Hofmeister
Hi Tim, I'm only about 4 years ahead of you on diagnoses, but I bet we're both had ignored symptoms long before that.
It's strange how for most of my life, I never wanted much to do with maybe, or might, but now I tend to cling to that. I understand the logic of waiting until there's something more concrete, but I'm running out of time to wait and really feel like trying a maybe
or might.