Finding safety while living with the constant threat of MS progression

Thanks again for expressing my (our) experience and thoughts in such a witty, yet somber way. Whenever I read your columns, I ask myself, "How does he know what's happening to me?".

So good to read a brave, and funny outlook on our unchosen lifestyle...you have a great outlook, 'snide' or not, it always cheers me no no-end ! Thank you Mr Hofmeister!

I enjoyed this post because you described your condition. As a fellow ms sufferer, I like to get a feeing for how it's affecting people like me.

I’ve not seen a better description of living with MS and progression - and one that made me laugh. I am now considered a quad because every limb is impacted but I do have one arm/hand that can hunt and peck. I am in a power chair now after I hurt my shoulders and tore a rotator cuff many years ago.. I remember all those years of progression steps and continually adjusting how to live my life.
Thanks for the great article!

I just wanted to say that I was literally THRILLED (like heartbeat jumped) to read that someone else is aware of the freaky butterfly feet! LOL

Good to see you back Ben so glad you've mastered the Tec to enable you to write.
Great column sums it all eloquently.

Thank you for your honest & refreshing articles. And thank you for military service❣️🇺🇸I was diagnosed this last August with RRMS at age 69. Were you originally diagnosed with RRMS or was it identived as PPMS from the start? Is it service related?

Well, I hope that voice stays safe for a long time, because we need you!

I am very concerned about John Connor. Of course I understand his right to privacy. Still, those of us who follow him relied on his dark humor. Is there any hope that we might learn more?

Wendy

Absolutely chilling.13 years ago I was diagnosed with ppms.Twrs later I had to retire as a chef because of my balance and fatigue. About 2019 my right hand began to clinch closed. My regular Neurologist sent me to an MS specialist neurologist. She took another MRI and came to the conclusion that there was a lesion on my cervical spine. She was telling me in no uncertain terms that there is nothing that could be done. The lesion was the reason! Remember I'm a chef and now I can't even hold a knife to be able to ..Fcook for my family. What a gut punch! Now not only do I feel kind of worthless to society but to my family as well.To fast forward to today I now have SPMS and have had relapses that have put me in the hospital for three weeks. That is why this article hits home me. God bless you sir and us all with this invisible,horrible disease.

Thank you for sharing. You have an exceptional way of explaining exactly what I am feeling or going through with PPMS. Many times my symptoms and progression parallel many of yours . You put into words what I am thinking and feeling with my MS. I often share your articles with my friends and family so they to can have a better understanding of my PPMS.

Bravo, Ben! Since my own diagnosis I’ve used analogy to explain to non-MSers what it’s been like living with MS. Who would’ve thought Richard Attenborough and the perils of sea snails could be explanatory? Keep on with your writings. They’ll reach farther than you can know.

Wonderful writing! I, too was pretty complacent in 2003 upon diagnosis. 2013..oh, it’s not too bad. 2024..hmm. Had forgotten how fast the years fly by. Got kicked upstairs to secondary progressive this year. Will go down some day, but will go down fighting!

First. Thank you for your service. Second. Thank you for your relatable writing. As I was reading, I found myself thinking, this is my story. Started at 25 years old. Just tired. 27 a limp 29, my career. I just turned 38 and the rest is happening. A few MS patients started a nonprofit that tracks MS research and stores it in an accessible research database. I think every MS doctor and patient should be in this Facebook group. It’s so helpful to find information and it’s motivating to see the research develop and know that MS treatments are being discovered. Solving MS.

I loved those nature shows, too, even though the story lines were contrived but made to seem real by narration and the magic of editing. Unfortunately, there has been no calming narrator assuaging my fears over 40 years living with the slow but incessant creep of MS. Hanging with my herd helps but I feel safer having grown a hard shell and tentatively emerging from under my rock only when a ray of hope lightens a fleeting path of possibility.

Thank you for your realistic comparison. The only thing missing from these shows is how to send funding. After I watched several incredible documentaries featuring elephants and how man continues to eradicate their habitats, I told my family to please leave a little of my estate to support these beautiful creatures. And then I remembered, much of our assets, will go to my support, if I live. So elephants or me? An existential question.

Hello Ben- This is late :-( In my comments to various posts here and there, I am motivated recently to try to point to the uncertainty of MS as being a major factor in the disease, unlike other diseases. You have lesions, MRIs, DMTs, diagostic labels, and you have uncertainty which includes x, y and z leading to a, b and c. The uncertainty leads to outcomes you don’t see in other diseases, and these outcomes are significant. I think that’s important for newbies to hear. But that is not my final way of putting it; still contemplating that. I like the analogy here.

Our son has recently been diagnosed with MS and I read all the articles on this thread for answers. He also had an eleven year career in the Air Force but now only has small periods of function. I have really enjoyed all the wisdom you have shared and your outlook. You have shown me courage in the MS progression and I am deeply sorry this affects good people. Thank you for your service and continue to "write" articles.

Thanks for this, Ben. You've put into words that perpetual feeling we have; If our lives were a nature show, this would be right before the certain shark attack.