Travels with Lewy – 3

Sometimes Lewy just picks you up, throws you in the backseat, and you just have to enjoy the ride. This is how I have felt for the past 7-10 days. I don’t drive so my wife is my chauffeur to get me around in reality, Lewy hijacks my brain and takes me on a “thrill” ride without any notice. Sometimes these rides last a short time, an hour or so, and others could be all day or in between. There is no warning. It is a tour of all of Lewy’s favorite symptoms, hallucinations, dizziness, sleep disorder, dazed and confused, muscle rigidness, joint pain, forgetfulness, and more. These are the kinds of rides that you really don’t mind missing. The only good thing is that they eventually end. They seem to be ending now and for that I am grateful. Hopefully this part of Lewy leaves me alone for a while.

Lewy has given me a knew traveling companion, tho, a new cane. My left side is very weak and I need my new friend to help me get around. I haven’t named him yet but that should be coming soon. We go everywhere together. Especially stairs, they have become my new enemy, worse than Darth Vader. I look at stairs and give a big exhale before I figure if I can make it up walking or sit down and do the butt slide up to the top. This has become one of my major decisions, most days. Most of my other decisions deal with either pain or urgency. Also I have also started slipping and falling, even with my cane. These are all wonderful new things to bring to my neurologist appointment coming soon.

The above meme is unfortunate, but true. I take notes daily, both to take to my doctors and to help me write these blogs. My memory for all things is slipping and not on the ice where it can get back up. This to me is my second worst symptom. The worst is my sleep disorder where some nights I either beat up my wife or fall on the floor, all unbeknownst to me. Things I do and see when I am asleep are the worst to me as I am not in control of my thoughts or actions. The hallucinations in my bedroom at night are the worst because I cannot always distinguish reality from the hallucinations.

I know for people without Lewy this may be hard to believe but this is all in the past week. The people with Lewy for a while are saying, is that all you have, bring it all. That’s the real trip, the one that has transformed me into the person who hasn’t given up, so I keep asking Lewy, Is this all you got?

As always, I write these blogs for everyone and if it helps even one, that is fantastic. They do help me by voicing my symptoms and occurrences so I can look them up and bring to my doctor’s attention.

Everyone reading this is in my thoughts and prayers. All with Lewy and their caregivers get some special prayers. Thanks for reading.

2 Replies to “Travels with Lewy – 3”

  1. Hi Brian, Thanks for taking the time to tell everyone what this is all about for us Lewys out here trying to navigate the “real” world. The real world is hard enough to deal with, let alone through the filters that this wonky guy Lewy gives us, though we never asked him for any “help” but it seems we don’t get any say in this set up called life. I started with a cane 2 years ago—now I’ve “graduated” to a walker. I’ve got an autoimmune “thing” that eats up the muscles so my legs are weak because there is no cure & Im resistant to any treatments. I’ve decided there’s no point in treating it or even trying to anymore because the side effects of all the meds, well, Lewy & I decided it’s not worth it. I laughed when you described the butt slide for getting up & down the nighttime of stairs—I thought I was the only one! It’s nice to have company now. As they say, misery loves company! Looking forward to reading your next post. Yours in Lewy, GMW

    1. Thank you for sharing your ordeal. If your current Dr/Neurologist can’t find the right meds for you, look for another one. We all have the right to keep looking until it works. My blog comes out every week to 10 days depending on Lewy, he’s the boss. I have other posts if you search through the articles on Last Out Media website, you should be able to fimd them as well as articles on different topics.

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