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…
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,…
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…
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…
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….
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….
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…
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…
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…
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…
