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Tag: living with a chronic disease

Ocrevus, Rituxan not new drugs

Ocrevus, Rituxan not new drugs

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I received an email yesterday about a new drug for progressive MS called Ocrevus. https://www.cbsnews.com/video/new-drug-provides-hope-for-those-suffering-with-ms/I don’t get it, I’ve been on Ocrevus for almost 2 years already. Is it really still new news? I wish I could rave about this drug that it has done wonders for me, but it hasn’t. I haven’t had any relapses and for that I am thankful but it certainly hasn’t halted my progression. I am worse today than I was two years ago. That…

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What I learned on my trip

What I learned on my trip

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There was no bad weather in NY that my vacation was cut short. However, today it is 5 degrees with a real feel temperature of negative 15. Yet I’m comfortable and was freezing in Mexico, what was that about? My trip was great but there was things that would have made things easier for me I guess I know now if there is ever a next time. One of my biggest obstacles was the bed. They gave me a step…

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You can’t walk but you can swim

You can’t walk but you can swim

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Those were the words this morning from my mom as she watched me swim in the pool. The pool which was so cold I might add. I was determined to do some laps this morning despite the near frigid temperature. I still swam for roughly a half hour. My mom, the sport she is, got in the frigid water with me so we could walk the pool. This particular pool gets shallow towards the middle and deeper towards the end….

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Spinal Cord Lesions with MS

Spinal Cord Lesions with MS

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My neurologist from early on has done MRI’s of my spinal cord. It is where most of my MS activity has been over the last 21 years. My first major attack back in 1998 left a large lesion in my brain but since than it has really all be spinal cord. So what does that mean? Well I asked my doctor the same question. He said spinal cord is why I have no cognitive issues as I’ve progressed. He also…

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A reminder how long I’ve had multiple sclerosis

A reminder how long I’ve had multiple sclerosis

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It’s was my routine checkup with my neurologist today. One month shy of my 21st anniversary of my multiple sclerosis diagnosis. This appointment was with the neurologist that made that diagnosis 21 years ago. He knows me well. My folder is very thick and over the years it has been thinned out and moved into storage. Every time I see my file it is a reminder how long my history with this disease has been. 21 years. I ignored it…

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This week at physical therapy-strengthening the core

This week at physical therapy-strengthening the core

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I asked in therapy about the issue I had in mahjong last week https://multipleexperiences.org/2019/01/04/couldnt-hold-myself-up/ with holding up myself up. We discussed the issue with my weakened core muscle. I’ve had multiple sclerosis for almost 21 years and it was my core region that was on of the first things effected by MS that never got better. It an area that has always given me issues and has always been an area we work on in therapy. A while ago I…

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Couldn’t hold myself up

Couldn’t hold myself up

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This wasn’t good. I went to play mahjong for the second time yesterday. It is a game like rummy cube with Asian tiles. Your hands must match to an approved hand on a card. You play with four people around a square table taking turns picking and throwing tiles. Not very strenuous unless you have some type of multiple sclerosis symptom making it difficult. I had that MS symptom. At first I was fine, other than my game itself. However…

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Brrrr it’s cold in here

Brrrr it’s cold in here

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Well actually it’s cold out of here and by that I mean the pool. I go down and it’s all warm. I get into the pool and it’s nice and warm and I get out and I’m frozen. I think it is once again a big thanks to my MS that once that chill sets in I can’t get warm until I hit a hot shower. That leads to overheating and acting up my other MS issues. Not the most…

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Getting back into routine

Getting back into routine

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It’s been a while, seems like months, but it’s only been a few weeks. I am finally getting back into my weekly routine. I’ve said this many times in my blogs, I need the stability of the routine. It helps me function and cope in each given week. When I’m out of routine I feel a little lost. My MS may even act up and become cumbersome. Might be part of the reason for my lethargic ways these last few…

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Trying to get funding for a disability van

Trying to get funding for a disability van

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I have to admit, I never expected the handicap vehicle to be quite so much money. I’m glad at least when I started this journey I did start at the dealership first. I have a foundation from multiple sclerosis that is helping me but they certainly didn’t have enough funds for the entire van, or anywhere near it. The multiple sclerosis foundation only helps with the purchase of the conversion and they certainly don’t cover the full cost. I’ve done…

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