ed-tobias
Forum Replies Created
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Hi Jilly – That’s great news! I know of a lot of people who have done very well on Ocrevus (the brand name in the States). I hope that it’s the right DMT for you. Ed
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Jilly, Sorry about your new year. I hear you and absolutely know how you feel (probably better than anyone else). There are people who think they know what’s best for us. Sometimes they do have a clue but usually they don’t. I love that you’re making toys for kids in the hood, btw.
Ed
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Great idea, Jilly.
Ed, SPMS 🙂
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I have to say it can be a challenge getting through my door when I’m riding my scooter and also have our dog with me! Ed
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I just kept on doin’ what I’d been doin’, John. My MS progressed slowly over the past 42 years, so I didn’t feel the need to do anything special. I just continued my life, eventually getting slower at doing that.
Ed
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That’s excellent, Jilly. I’m so glad to read about your project. I wonder if anyone else here is doing some similar craft projects.
Ed
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Operate Morse code with my ham radio, read, swim, drink wine (usually red).
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Thanks for the info, Rob. I’ve found that the 50/50 THC/CBD split is too much for me. I’ll occasionally use half a CBD gummy to help ease my twitching legs in bed at night. That’s it.
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I’ve found a lot of info about virtual reality on the main MS News Today website. (I knew I’d seen it somewhere.) Just go to the home page and search for “virtual reality” and several stories will pop up.
Ed
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Hi Rob,
It’s not directly related to neuroplasticity but I just saw this report yesterday on an NIH study regarding children and cognition. I vaguely remember seeing something about VR and MS and I’ll try to find that.
Ed
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When I was diagnosed, in 1980, I figured I’d live with it. The only question I remember asking my neuro was “will it shorten my lifespan.” Told “maybe by a few years,” I figured I could handle that. Now, 42 years later, I have some frustrations but, over all, I continue to live with it.
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Hi Maggie –
I’ve just okayed your post but please re-enter the link to your study. The one you provided went to a sample web page, not to your study.
Also, I’ve moved your post into our “Living With MS” section, which is more appropriate than our “Welcome” area.
BTW, I participated in one of your courses about two years ago. It was quite comprehensive.
Ed, Co-moderator
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Hey Jilly,
That’s great news about your plane trip. I’m really glad you’re getting around like that. I’ve made a lot of plane trips, for work and play, over the years…many of them with my little TravelScoot scooter. You really don’t know what you can do until you do it.
Ed
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Hey Patrick,
Let me join John in welcoming you. I’ve been living with MS for over 40 years and I’m guessing I’ve been in that tube 50 or 60 times. Sedation can help, though I’ve only used it once, for one very long session. Usually, I just close my eyes before being slid into the tube and keep them shut. I listen to the beat the machine makes and I pretend I’m a drummer in a rock ‘n roll band. I also count to 60…1, 2 ,3 ,4…2, 2, 3, 4…etc. By the time I get t0 20 X 60 I’m usually done.
Ed
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MS certainly is a strange illness, Howard. For most of my 42 years living with MS I’ve had just the opposite…I hardly sweat at all!
https://multiplesclerosisnewstoday.com/news-posts/2019/06/03/my-ms-is-no-sweat-is-yours-too/Ed
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I have stories, Jilly…if I can only remember them. This was the late 60s, after all!
Hope the new bed rail will solve the problem.
Ed
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Hi Gayle,
I used to take 10mg baclofen before bed each night but I stopped doing that. I now use Gabapentin before bed and take a tablet of baclofen if my spasticity/cramping gets bad. I think staying hydrated helps prevent the cramping.
I’ve used CBD gummies, occasionally, to help me sleep. They haven’t seemed to help for cramping, however. I think a combination of THC/CBD might be needed for that. Someone at a good marijuana dispensary, or a THC/CBD website, may be able to give you more specific advice.
Ed
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Hi Alan,
Very interesting. Thanks for sharing with the group.
Ed
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Thanks for the useful info, Cor. I’d love to see some specific information about various strains and MS, and also some quality control standards. It’s hard enough to figure out how to use prescription medications, but the use of marijuana products seems like a crap shoot to me.
Ed
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I’m glad to hear that, Cor. I was just reading today about someone who changed to a plant-based diet several years ago and doing so seems to have helped hold his MS progression at bay.
Ed
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Do you use a particular strain and in what form do you use it, e.g. smoking, eatable?
Ed
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Well, Jilly….you certainly know how to express an opinion. 🙂 I hope your new year is starting well. Ed
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That’s too bad, Brad. Of course, you can get a similar benefit from the CBD/THC combinations that you can get in many drug stores, and all over the internet.
Ed
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Let us know what you’re research turns up…but don’t work up a sweat over it!
Ed