I say “I’m fine” a lot for someone who isn’t really “fine.” Some of it is because it’s just the standard answer to what is little more than the standard greeting of “How are you?” It’s almost as though people have to throw in some keywords to let me know that they really want to know how my life is going.

Some of it is because, like nearly… Read more

Great perspective! I agree, even when it’s tough to watch, I think it’s important for stories to be told authentically.

For the life of me, I can’t think of one solid example, but I know I’ve seen MS depicted in media before. A big part of me would say that it’s not very realistic, but I realize my reality isn’t necessarily anyone else’s. At the same time, it’s like seeing something on TV or in a movie about Army life and rolling my eyes and thinking that it’s…

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Hello, MS community!

I enjoyed this column by Anna Jeter. This is from Pulmonary Hypertension News, one of our sibling sites. Anna writes about many of the frustrations she’s had with medical dramas in the past, and how they are often woefully inaccurate. As a patient with pulmonary hypertension, she stopped watching these shows for a long… Read more

What they need is a pool of test subjects willing to take risk because we’re past that point on the edss.

Sorry sir you’re not a candidate because there’s a risk that this could make your walking ability worse.

Go ahead, there’s no worse than zero.

Seriously though, even on Ocrevus, I increase on average one point on the edss every 5 years. If I’m…

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Yeah, I’m right over the line, about a 6.5, which is irrelevant because I’m 70, so they wouldn’t want me even if I were a 1.

I really started to like all the balsamic dressings and reductions myself! You can get very low sugar ones without sacrificing flavor at all. I’ve also found that a good hummus is perfect for dipping my veggies in. When I was in the elimination part of my diet, I had to avoid anything fermentable, so beans and any Bean base dips weren’t an…

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I would really like to be in a clinical trial for a potential therapy for ppms. I’m not eligible because my edss score is an eight and the cutoff is usually no more than six. I understand, they need good measurable data that shows Improvement in order to get FDA approval and they wouldn’t necessarily get that from me. To me going down one level…

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I didn’t see this until just now. I, too, have PPMS, and think this is fantastic news!

I also went to the Mellen Center at Cleveland Clinic for a number of years, although I live in Pittsburgh, because I believed that their MS center was superior to any in my city, and still do. But then I came to the conclusion that whether I went there or…

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I’m mostly just trying to cut calories, so veggies are the default. To make them interesting, I’ve found some balsamic reductions to dip them in that aren’t too high in the calorie count. It’s really the crunch that I need. (sorry that this isn’t a snack mix, just a snack)

Thanks! That last paragraph was especially inspiring.

Oh, do I understand that depression. For me, I think of it as long-term grief rather than reactive or clinical depression. More than once, and from everyone from a friend who was a physiatrist, to a psychiatrist consultant, to a series of SLPs, I was told to practice complete vocal rest (no speaking, singing, humming, whispering, or straining…

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I’m in a wheelchair so I don’t have to worry about wobbly legs, but my driving goes downhill fast if I have more than two. DUI in a wheelchair I guess.

I have to admit that I’ve tippled more than my fair share of beers in the day. If it had a hand in causing my MS, oops…too late now.😮

These days, even though I’d love to have a happy hour, alcohol really affects my legs, which are already bad enough. They go from really wobbly to falling down, and I don’t even have to be drunk–one beer will… Read more

I have always liked snack mixes and kept them close to hand in between meals. The diet I’m following right now is very restrictive on carbohydrates and sugar. That eliminates most of my pre-MS mix choices, and I’ve been struggling to find the perfect alternative.

So far, I found four that fit the bill, but still aren’t perfect (for me).… Read more

I had to reopen this one too, because I’m in the market for a new wheelchair accessible van. The family has been getting around in a minivan with lowered floor and a slide out ramp, but my three boys have outgrown the small bench seat in the back.

We’re looking at full size vans, but the mobility dealers don’t seem very keen on the idea.…

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I had to go back into this one since it’s starting to get warm here in the northern hemisphere and I’m already thinking about summer activities, possibly the beach, and sitting outside with a summer type cocktail in my hand.

My go-to summer drink over the years has always been gin and tonic. Now that I’m more sedentary and….. older, I have…

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I’m getting a new wheelchair, and I have been recommended by my physical therapists to request a model that will stand me up.

Currently, I am non-ambulatory. The benefits of standing, including bone density, muscle wasting, and digestion, to name a few, are very compelling.

Has anyone here used a standing chair? What did you like or dislike about it?

I was probably about as far from a trained singer as you can get, but I always enjoyed singing in the car or shower. So much so that losing the ability due to weak breathing and weak vocal cords depressed me a lot more than I thought it would.

There have been some great achievements in MS research, and more are coming in the near future, but it’s hard for me to get too excited anymore.

That doesn’t mean I’m not hopeful. I’m much more cautiously optimistic, having lived with this disease for a number of years.

Are you optimistic about the state of MS research? How do you manage… Read more

I have seen a pulmonologist more than once. The first was after a hospitalization for pneumonia. Most recently, there have been occasional visits along with voice therapy from specialized SLPs, Speech and Language Pathologists, for a weak voice, something I never expected as trained singer and public speaker.

See the linked article for insights into how smart glasses could potentially benefit those with multiple sclerosis.

Do you use any smart glasses? What has your experience been like?

👓 Smart Glasses, MS & the Next Layer of… Read more

I requested a referral to a pulmonologist, and I’m so glad that I did. I’m also a little perplexed that none of my providers have suggested it before.

My MS is fairly advanced, but I was having difficulty with the muscles of breathing even when I was still walking and driving. My hospitalization in the fall with pneumonia was a wake-up call… Read more

My wife and I met and married before I ever knew I had MS. I was about to say I was grateful for that because I’d be really nervous of dating right now, but the truth is the diagnosis and progression of disability effects our relationship too. She is a registered nurse, so the concept of taking care of someone is not strange to her, but a lot…

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It’s the amount of appointments that gets to me. I mean different appointments with different providers. If I had one every day of the week with just the neurologist, I’d get fatigued but it wouldn’t be the same as it is when I have appointments with Neurology, Dermatology, and pulmonology for example. Don’t misunderstand I’m not faking…

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In my column this week, I strayed into what was definitely some venting and honestly could have been considered ranting. At my final proofreading, I was feeling a little ashamed for making even a little emotional outburst and considered not turning it in to be published.

Then I reconsidered after thinking about it a little. We have a… Read more

Living with MS impacts every aspect of a person’s life, including romance and relationships. From communicating with one’s partner to having them take on caregiving roles, it’s a lot to navigate. Fortunately, many members of this online community are in healthy relationships and can share tips based on personal experience.

If you are… Read more

It’s winter here in the Northern hemisphere, and for me that means chili, soup, and other hearty warm food and drinks. The problem is that if the dish is too hot, it often seems to make my MS react the same way as it does to hot weather.

Do you have any MS comfort foods? Do any have any unusual side effects, positive or negative?

My column this week dealt with one of our five pets. I love having pets, but my MS would make it next to Impossible for me to take care of one by myself. Without my wife and kids, I think I would have to be petless for nearly the first time in my life, and the thought makes me a little sad.

Do you have pets? How do you balance taking care… Read more