Travels with lewy — 2

As we all know Lewy is a roller coaster and most times we are alone, we may have caregivers, family, and friends with us but none can truly know what goes on in our mind and bodies every hour.

Just like a roller coaster, there are pauses, high points and low points and in between. The worst is the rising to the high point because you think you are doing great and then reality comes crashing down. I would trade anything for an even keel once in a while but that hasn’t happened as of yet. The ride down from the high point is scary and filled with so many turns to make sure I get all my symptoms at least once.

My autonomic functions seem to want to play the game too. My bladder seems to be leaking as well as my bowels leaving presents for me. Again not an everyday occurrence just enough to be a pain in the ass.

There are times also when the symptoms feel like waves are crashing down around me and I am being swept away in a hurricane.

Today is one of the few days where Lewy seems to be taking a rest. I am on an easy part of the coaster and I get to take it easy. My symptoms today are more being in a daze and not with it. I must mention, everything above the waves was 1 day, up, down, side to side and left sleepless. A day like today is always welcomed. I can do most things, it just takes some extra time to get er done. Days like today are not very often, my brain does not let that happen. I would love to be a whole brain person again but that isn’t going to happen so I have to settle for what I have. I have found out 1 good thing, I can remember words to songs that I had forgotten. So my family gets free concerts. The music seems to help keep me easy and calm. Also brain games on my phone. Puzzle games, Mahjong tiles, chess, and some more

I pray for all my Lewy companions every day and also for caregivers and scientists that they find a cure one day. I hope everyone keeps following my exploits and please share and comment if you have any questions. My days are now wanting to be like this again.

2 Replies to “Travels with lewy — 2”

  1. Yes, urinary incontinence is nearly 100% now. Never thought I’d say this…Depends adult underwear is the best thing that ever happened in the last six months. They work! Comfortable, safe, secure…will never risk falling to rush to bathroom. And no more ruining or washing underpants. No one even knows I am “using” them while sitting and talking. Sorry if too graphic, but Depends has brought back some quality to my life.

    1. It’s not real bad yet and not everyday but keeping the depends in the forefront of my list of ideas. Need to write it all down.

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