Week One

My first week of PoNS has been that best. I had to find a bunch of things for not getting car sick. I tried wearing an eye mask because I thought covering my eyes would help since my eyes are the culprits — not helpful. So I looked on Amazon for everything that I could try: patches, another thing for my wrist that has these vibrating things for a pressure point, these ridiculous glasses, and a combination seems to help. I also found that hunger adds to feeling ill, so I eat the most breakfast and pack extra snacks for the trip home.

I don’t have any pictures of me doing actual PoNS because I’m busy so here’s me wearing ridiculous anti-nausea glasses 🤓

The first three days were full days. Well, sort of, I had a morning session, an afternoon session, and Synaptic was kind enough to let me hide out in a room between the two. I haven’t been this hungry since I was nursing. It’s insane because it’s not gradual hunger like “oh I’m feeling a bit snacky!” It’s more immediate “I need food or I’m going to throw up and pass out” about 10 minutes into a pons session after I’ve already had a full lunch. After the first day I remembered to save some lunch for a few minutes before my afternoon started.

So far it’s been amazing. I think the second full day I was already noticing some differences in my leg. Sometimes it’s reluctant to do things like pull back? Imagine moon walking? One of the exercises we did was just wheeling myself around in an office chair, seems easy but for my right leg it’s the most difficult thing. Pulling my body with my leg, trying to make it so my heel goes under me, and not let my good leg help. It was tiring, me and my physiotherapist were wheeling around in circles (but not actual circles, more one direction movements while she guides me not not crash into things/people).

I have trouble not being upset at my own body for not doing things correctly, but it seems like being kind and loving to my leg or arm helps? I’m not sure but it helps me to push forward and not to be upset when I need to rest.

My auntie Jan has picked me up every day this week and normally I’m mentally exhausted by that time, but I told her about the positives! My hands that are always so cold, were actually warm when she came to get me, I think it was the third day. My physiotherapist told me that they were really cold one day and I laughed. But they are weirdly warm now at times they are usually cold. It’s not gone though…they are still ice at times, but it’s something! Another thing we did was another balance (I think) where I needed to put my strong leg in a position where it couldn’t help. My right leg was in charge of holding me up and it’s the first time in a long time where I actually felt that leg doing work alone! It sucked! But it sucked because the muscles were doing something! I was in awe, and I was describing it to Neil today so I’m still pumped.

The progress so far has been slight, but it’s been a week and there is PROGRESS. I’m happy because I was prepared for nothing. I used to think that the next thing I would try would be a miracle cure for it all, I would be free of walking aids and running again. I’ve come to more realistic expectations because I needed to stop setting myself up for disappointment. This week and even today, I’ve struggled with the ebbs & flows of my body’s performance. I know that improvement won’t always be linear because what is with our bodies? I should know this especially from learning with Oliver, being a teacher, and just being a human.

Anyways, PoNS so far I like.

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