Eight months after a nasty MS relapse, I walked around the neighborhood with my family tonight for the thirty minutes of exercise required by the protocol I'm on. Good, fast walking. And you know what happened? My flip-flopped feet felt dirty at the end of the day once again!!!! And you know what I did?? I thanked God for dirty feet!!! :) Ha ha
If we were to go back 8-9 months, you'd see me cautiously moving, trying to avoid right side of body spasms. They were exhausting, uncomfortable, scary, and causing a lot of anxiety. I walked hunched over, not so fast, and normally had someone with me when I did walk. My husband helped handle the household responsibilities, he helped wash my hair, and I often woke him up at night to come to the bathroom with me.
After steroids and baclofen (and LOTS of prayers) the spasms eventually stopped. I weaned off baclofen and started physical therapy. Then in September, I started Dr. Coimbra's Protocol for MS. I started on doses really too low to call Coimbra's Protocol. We started on only 20,000 IU a day, this was partially due to some blood test results. I did follow up labs in December and we increased my dose to 50,000 IU of D3 a day. In February, I did labs again and increased my dose again, this time to 100,000 IU of D3 a day!! I really began to feel something that I felt could be connected to the protocol.
The initial noticeable MS relapse was in June. It started with a dull dizzy feeling, extreme exhaustion, and a shaky, low blood sugar type feeling. Then my right arm started feeling sorta limp, although I still had strength in it. So when I went to urgent care I looked a little like a crazy lady. I went to a chiropractor the next day who suggested anxiety and/or blood sugar issues. We got into my PCP and by that point, my handwriting started to get sloppy. He got me a neuro referral. By the time I got to the neuro I had already had a similar limp/weakness feeling in my right leg come and go and tingles in my face come and go. My coordination was beginning to suffer though. When he wanted me to walk a straight/tightrope line, I looked a little like a drunk lady. Of course, my sister and I were laughing about this, which then caused my neuro to list "giddiness" as a symptom. Ha ha!
After an MRI revealing 20+ lesions, with lesions on my brain, c-spine, and t-spine, my neuro felt it was MS, but I also had positive Lyme tests. He wanted me to get a second opinion at a reputable facility. While he thought the Lyme was a false positive, he wanted me to see several specialists to look into some things - one to rule out a brain tumor. Specialists are not quick to get into, so we waited. But I worsened and eventually wound up in the hospital. At the hospital, Infectious Disease Doctors and Neurologists showed up and ruled out a brain tumor and Lyme disease and confirmed MS. From there we went forward with steroids.
Anyways, after all that was behind me, we started Dr. Coimbra's Protocol which requires 30 minutes of brisk walking a day to prevent bone loss on the protocol. Physical therapy helped a lot, but I still wasn't ready for brisk walking. I found it difficult to do a lot of moving around still. Fatigue, dizziness, processing issues, etc. It was taxing for my brain. I discovered I had a lesion on an area in my brain that relates to processing spatial information. I normally wouldn't feel dizzy if I was just sitting still, but would be careful about walking a lot/doing a lot. I was careful about moving my head, etc. Processing a lot around me can be hard on me. So we started with a recumbent stationary bike. No movement (besides my legs of course ;)). It was low to the ground and safe if I had a spasm again. I started doing 30 minutes of this a day. I then started subbing out partial time with marching in place behind the recumbent bike while holding on to the back of the seat. Then one day, I discovered I could march in place for the full 30 minutes!!! I still wasn't ready to walk around for the 30 minutes, but I could march in place!!! Then I would march in place while using weights and part of the time I would do "stair stepping" on a step stool. :) Then I decided to try the walking. I walked with focus, head down/still, so as to avoid processing everything going on around me and to try to avoid motion sickness from my head moving around too much. The next night we tried again and it was easier. I was able to look around a bit more. The third night was even better. The fourth night, I was exhausted and we slowed down a bit, but I was still doing better with processing/not having to keep my head down!!
It feels strange having that dirty feet feeling at the end of the day again. I always wear flip flops so it was a very common feeling before, just from actively doing life, but it hasn't been such a common feeling lately...So today I am grateful. Grateful for dirty feet!!! :)
