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Tag: living with MS

My handicap van update

My handicap van update

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I thought I’d write a blog on the update on my van. Unfortunately, I did not get as much in grants as I was hoping for which was somewhat disheartening. It was my own fault because I just got a number in my head that was delusional. I was able to secure $5,300 in grants from the MS Foundationhttps://msfocus.org/ and the MS Hope Foundationhttp://www.mshopefoundation.org/. I was denied from the Chive Charity https://chivecharities.org/ and the National Multiple Sclerosis Society doesn’t do…

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My life today

My life today

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I never thought at the age of 47 this would be my life yet I remember being scared when I was diagnosed of being in a wheelchair. I knew what multiple sclerosis could bring about and I feared that when I hit the 10 year mark everything would go downhill rapidly. That wasn’t the case because there were medication developed that helped to slow down the MS progression and more and more have been developed. My life took on a…

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Monday madness

Monday madness

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First time back in physical therapy today. I should get double activity points on my Fitbit from this and it registers as nothing. I was there for almost 90 minutes and it’s all exercise that it so difficult to do. I mean I’m struggling doing leg lifts with a 2lb weight on my ankle. My sit to stands needed assistance from the therapist so I could either get up from the chair or not fall over once I’m standing. Then…

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Multiple sclerosis set to mild for the week

Multiple sclerosis set to mild for the week

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I’ve had a week to rest since my vacation and I have to say I needed it. I did do my Beachbody Cize workouts every morning. I did get food delivered and cooked. I did reorganize myself,but other than that, I rested. Today I’m going to occupational therapy. This is the easier of the therapies for me because it doesn’t normally wipe me out for the day. I can’t complain my MS symptoms have been somewhat mild this week. Yes,…

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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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I’m on vacation my MS is not

I’m on vacation my MS is not

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It’s been less than 48 hours that I’ve been on vacation and my multiple sclerosis has not been easy. Half of my clothing I’ve worn so far has been washed due to bladder issues. Not a fun way to start. Really MS, you couldn’t keep that shit together for a few days? I’ve had countless people helping life me feet up small steps or onto golf carts from my family to hotel staff because my legs are far from cooperating….

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Shoes and sneakers

Shoes and sneakers

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I have such issues with shoes now. I miss the days I could wear my boots with chunky heels. I never could wear stilettos but I could get away with those. Now I can only wear sneakers or wide shoes that are completely flat. I use to wear Keds sneakers all the time. Quick slip on shoes that I had no issues putting on myself. Now, thanks to swelling that is still unexplained, they are too small. I wear my…

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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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