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Tag: Ms progression

2018 MSAA’s New MS Research Update links

2018 MSAA’s New MS Research Update links

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This is a super valuable link. I had this on my post yesterday and I think it got a little lost. The title wasn’t correct to attach this with. This shows you everything out on the market currently for MS. It shows the things that are currently in clinical trials as well as new research being developed in regards to MS. It is everything you need to know that is available, coming and being developed at this moment. https://mymsaa.org/publications/msresearch-update-2018/ For…

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MS World Day

MS World Day

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Marked by May 30th. This day is to bring the MS community together. #bringinguscloser This day is for us to share our stories, raise awareness, and come closer to finding a cure. Today I’m going to attach a 2018 MSAA’s research update. It has so much information. It has all the current drugs, experimental drugs and drugs in clinical studies. A great research tool for anyone with MS. https://mymsaa.org/publications/msresearch-update-2018/ Full downloadable version https://mymsaa.org/publications/msresearch-update-2018/download/

“Fear” of walking with canes from the rollator

“Fear” of walking with canes from the rollator

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My MS therapist was here yesterday. She was doing some balance stuff with me in the pool observing my core. She said you should be walking now without the rollator. Not without help mind you, but with canes. My back is so straight I should be able to be upright, not leaning over with the rollator. So that is the new game plan, to start teaching my legs to walk again with two canes for balance. We did a practice…

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Ocrevus infusion a few months later

Ocrevus infusion a few months later

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I’ve been asked this question quite a number of times so I thought I’d address this in my blog. I’m asked, do you feel any better since you’ve been on Ocrevus? Where I’d love to give a wonderful answer here, the answer is NO. however it’s also very important to answer, I also don’t feel worse. When I was on Tysabri, I was still feeling worse month to month. That’s why we made the switch originally to Rituxan, which is…

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Swimming-water therapy for multiple sclerosis

Swimming-water therapy for multiple sclerosis

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I’ve have a MS fitness trainer that I’ve been working with for about a year and a half now. She would come to the house and get my body to move in ways I personally wouldn’t willing force my body to do. It was hard. She saw where my body was weak and would attack my body in exercises, from different vantage points, to try to manipulate the muscles to do certain movements. When I moved to my new condo,…

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Managing fatigue

Managing fatigue

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I didn’t sleep well yesterday. Actually I barely slept. It’s been a very long time since I had a night like that. I don’t do well with lack of sleep, most MS patients don’t. For me personally, lack of sleep can create a very bad day. Luckily, I’m home today. I’ll be cooking in the morning. This afternoon my air conditioner/heater in my bedroom is being fixed. I end today with my MS fitness trainer in my pool. I have…

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The sounds of an MRI

The sounds of an MRI

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In having MRIs for 20 years, you get used to hearing the sounds. To me, they are extremely meditative. I end up making words to the beats of the sounds and go into the deepest meditations I’ve ever had. I’ve had several of my biggest epiphanies in MRIs. Each section they do, has this specific to droning sound. I find the more I concentrated on words to the sounds the more relaxed I become. I know this probably sounds weird….

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My disabling MS attack in 2014

My disabling MS attack in 2014

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It wasn’t always a battle. I remember at 40 I was still walking pretty good. I’d have a limp every now and then, when my legs were tired, but an outsider would never know. I’d have occasional bathroom accidents that I used to hide, but back then it was easier. Most of my symptoms were invisible. My balance was never great and I wasn’t running any marathons. Hell, I wasn’t walking any marathons either but I was nothing like I…

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Occupational therapy evaluation…OT differs from PT

Occupational therapy evaluation…OT differs from PT

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I had an OT evaluation yesterday. 0T stands for occupational therapy. The difference really between physical therapy and occupational therapy is occupational therapy deals with more fine motor skills. Physical therapy deals with more of the physical stuff. I never realized my health care covered 20 days of both therapies. I thought it was 20 days total. So this will be the first time in OT. For 13 years, I worked in a nursing home as a financial billing office…

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Learning to crawl

Learning to crawl

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I don’t know how babies do it, they spend months crawling around before they walk. Unfortunately, I’ve had to learn to crawl again. It’s part of the last five months of physical therapy. Crawling forward and back every time I was there. Why? If you don’t have MS you might not know why, if you have a MS you unfortunately know why. It’s because sometimes when I’m on the floor I can’t get myself back up. This could be because…

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