ed-tobias
Forum Replies Created
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Jilly, I haven’t been in a body shaped bean bag since college. Fond memories. 🙂
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A few years ago I participated in an excellent on-line course presented by the University of Western Australia about basic MS concepts. This seems just as interesting.
Ed
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Hi Jilly,
I’m really sorry you’re having this problem but glad that it’s never happened to me…at least not yet! I sure hope you’ve mentioned it to your neuro.
It’ll be interesting to see if others have had this problem.
Ed
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That, my friend, is a real bummer.
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This is a well-done, informative and easy to listen to podcast. Interestingly, my MS Wire column for tomorrow (13 May) looks at new research on an EBV vaccine by the U.S. National Institutes of Health, and its importance to those of us with MS. I also wrote a column back in January outlining the EBV/MS connection. I hope it helps people understand the link between the two.
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Hey Jilly –
We haven’t heard from you in a few months. How are things going in NZ? Still hangin’ in?
Ed
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Maybe not a stand-up, John…but certainly a health care Joker! (Rim-shot!)
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I was diagnosed with MS when I was 32. I’ve moved from playing tennis for the first several years after my DX to using a cane, two canes and finally an electric scooter. But I’ve used each of them to stay engaged. At age 73 I’m slow, but I still get where I’m going. And where I’m going, next month, is on a cruise with our son, daughter-in-law and grandkids. It doesn’t get much better than that.
What’s everyone else doing to stay engaged?
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I agree with Rennie that it’s very important to listen to your body. I’ve been trying to do that for the 40+ years I’ve lived with MS. However, it takes more than just a positive attitude to fight this illness. I’ve found that treatments, whether DMTs or meds that reduce symptoms, are important. Do others here agree?
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Diet is important but I don’t think it can do everything. Diet along with treatments is the way to go, IMHO. Disease-modifying therapies didn’t become available until about 15 years after I was diagnosed. I sure wish I’d been able to have been treated sooner.
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Pamela says she’s explaining, not complaining as tells us about her MS. But explaining our illness is one of the hard things about living with it. How do you – CAN you – explain your MS to others?
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Positivity is important. I’ve lived with MS for over 40 years and I always feel better if I swim and/or workout. It puts me into a positive state of mind. What does everyone else do to try to stay on the bright side of life?
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Just a follow-up to say this app is designed for use following a series of standard physical therapy sessions. It’s not available for individuals to download and is only for use with professional guidance.
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Hi Ruth,
That’s about the least expensive scooter I’ve seen, which makes me wonder about its quality. Keep in mind these things take a beating. You also need to consider it’s weight and portability, if you plan on taking it places in your car. If you’ve read through this whole thread you’ll know I have two different scooters, used for different purposes. Here’s a little more from one of my MS Wire columns: https://multiplesclerosisnewstoday.com/columns/2019/06/18/scooters-walkers-and-canes-trump-ego/
Ed
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I wouldn’t consider them carcinogenic, John. Many of the DMTs used to treat MS reduce the efficacy of our immune systems, leaving our bodies more vulnerable to certain cancers. But I don’t know that the DMTs, themselves, are the actual cause of the cancer.
Ed
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Hi Jilly,
Have you considered an electric scooter, rather than a chair? I got one more than 10 years ago and it was one of the best decisions I ever made. It allowed me to continue working full-time much longer than I would have been able to without it and I use a lightweight one that can be folded to travel all over the world.
Stop suffering. Try your best to get some wheels and get out of the house!
Ed
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Excited or exciting, John? There could be a big difference in the story that would follow!
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Jilly,
Put another way, too many people don’t think about the needs of other people. BTW, my wife and I got our boosters a few days ago. Minimal side-effects.
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That’s one of the bad things about government-provided medical care. It’s great that it’s free but you have horrible mandates such as “start treatment slowly (i.e. inexpensively), no matter what.” The government officials don’t seem to realize that providing the most effective treatment right away not only improves the patient’s quality of life, it’s cost-effective.
Can anyone disagree with that?
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John –
I’ve been following the Ocrevus/PML concern for a few years and, out of the tens of thousands of people who have been treated with it only about a dozen PML cases have been reported. And I’ve only come across one who had no DMT before Ocrevus. Here’s what I wrote about that.
I think whoever yanked you off Ocrevus should put you right back on it. (Just my personal opinion. As you know, I’m not a doc.) And you can tell him or her I said so!!
Ed
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Sorry for the delayed response, Jilly. We’ve traveled to Florida for the winter and it’s taken time to get settled. The answer is…it’s a management decision which, I assume, is related to security concerns. Sorry. Ed
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Glad you got a chance to see that, Jilly. Enjoying a simple pleasure like that can do a lot to keep our spirits up. You can’t upload a picture but I can imagine the site.
Ed
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Hi Jilly,
Your reaction to your second shot wasn’t a surprise to me. It’s common for these vaccines to produce a slight fever for a couple of days. Of course, you know that heat or a fever can cause a symptom flare. When the fever ends the symptoms also ease. It sound to me like that’s what happened to you. I’m glad you’re double-jabbed. I hope the vaccine protects you and others. (My wife and I are planning on Moderna shot #3 in a few days.)
Ed
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I agree with you John. Well said.