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Tag: ms over 20 years

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/

It was almost a catastrophe

It was almost a catastrophe

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I had my electrician here yesterday doing a new outlet on my balcony. He move my door, my front door, into an open position so he can come and go as needed. When it was done I said to my aid could you lock the door. She said she was running out to take the garbage out and to get the mail. When she came back in she never lock the door. It was hot yesterday so I have all…

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“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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Handicap parking spot abuse

Handicap parking spot abuse

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Can we talk about handicap parking? I know I’ve had blogs about this before, but it’s still a very sore topic for me. I understand that there’s a requirement that a certain amount of spots, based on the size the property and the total number of spots allocated, have to be given to handicap parking. It just never seems to be enough. Why is it never enough? Because everybody seems to get one. It’s not for the truly disabled anymore….

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My own handicap reserved spot

My own handicap reserved spot

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My condo gave me an assigned spot. There are six handicap spots in front of my building. Normally I leave in the morning and I’m back in the mornings, I get a spot back. However if I go out towards the afternoon, sometimes I don’t get a spot. The other close spots could also get taken pretty easily especially at night. If I’m having dinner with a friend, when I come home, parking is a problem. I can’t walk that…

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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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Another day, another battle

Another day, another battle

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Tough morning so far, and I’ve only been up for an hour. You ever have one of those mornings where everything seems to happen all at once? I know, everyone has them. I got a lot done it in a very short time. I got a letter from state financial aid, for my daughter, that I wasn’t approved. I had to call and it turns out I have to submit a revisal because I’m on disability. Great!!! I just need…

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