When it All Stops

Lewy Body has many symptoms. Count the stars in the night sky and add 20 and you have the symptoms. But what happens when they all hit at once. After the past week, I know. The pains have not come all at once but they have come on their time. I was not planning on writing this week but it is a sad Eagles game, the Debate, or write. I want to keep my sanity, as little as it is.

The pains in both my legs have been with me a while. Standing for periods of time is not happening now or anytime again as I see it. I stand up bent over and slowly straighten up. My back just started hurting so now straightening up is time consuming. Years ago, I was in a bad car accident and I broke all my ribs, cracked my sternum and my left hip. I have uncle Arthur Itis all through those parts of my body so Lewy had an easy job taking them over. Lewy has had control of my head and brain for some time now, so getting pain to my neck was not hard. I won’t bore you with my daily activities and the pain other than it is usually lunch time before I am able to get out of bed, get dressed, washup, do my constitutional and make it down stairs.

Walking is more of a problem. I shuffle more than walk. My left side is weak so if I put too much weight on my left foot, I am probably going to fall. I currently walk with a cane, it will not be long before that will be a walker. I hope it is longer than I expect but that is entirely up to Lewy. My hands shake as well as my legs and feet so it makes it harder to really do anything.

This not happening 24 hours a day, 7 days a week but it has been close. I have always had one or two symptoms at a time but never this many at once. Like most things, I know this will pass but it could hurry up. My wife and kids worry, especially when I almost took a header out the front door, tonight. I caught myself but was very unsteady. I am forever hopeful and pray that all of us get comfort. If arthritis harbors or aids Lewy Body, I am in for trouble.

Some other things that have happened recently. My hallucinations have been getting more numerous. Just this morning, I was having a conversation with 2 Big Macs. My virtual dog is still here and is joined by a tall man with grey hair and dressed in white. Seems friendly. The virtual parrot is learning more words. The giant spider stays in the corner. Once in a while I will see somethings that are bothersome but I just try to push them away.

I apologize tonight’s blog is not as upbeat and a little satirical but I am just not in that mood. My body aches everywhere and we all know that is not fun. I am trusting that this is just another bout of Lewy. Because if not my body may give out. But I always keep my head up and thank you for reading. I know this isn’t what you usually expect from me. Hopefully next week I will be in better shape.

God Bless and Peace,


A businessman looks through a spyglass as he sits in a rollercoaster car and surveys what is below him before he takes the ultimate plummet below.

6 Replies to “When it All Stops”

  1. Thank you for sharing. My husband is in the beginnings of this “journey” and I learn so much from those who have been on it for a while. Your input is invaluable. I am very sorry for the current pain you are in. I do hope it eases and gives you some relief. In the mean time, “be careful” – that is “full of care” in all you do.

    1. Marcia thank you. I spoke to my Neuro yesterday late in the afternoon. She advised that any arthritis can come roaring back in some people. I guess I got lucky. She said to call her if not better in a week. I write so others are prepared and when it hits are not filled with doom.

  2. Hi Brian, GMW here. I thought maybe it was just me, but now I see I’m not alone. I’ve got so many other diseases, autoimmune (which have paralyzed my digestive system & do lots of other ugly things, like spasms in my rectum & esophagus that make me cry like a baby, or scream sometimes, feels like I’m being impaled), & my bones break on their own because of osteoporosis, then there’s diabetes, hypothyroidism, & mysterious stuff that prevented me from using my legs a few years ago—I was in bed 5 months. But now, hmmm, makes me wonder because maybe all of this could be different manifestations of Lewy? It’s possible. I mean, they’ve found Lewy bodies in almost every organ when they’ve done autopsies—Lewy bodies are found in cells everywhere, & that can’t be good.

    Right now, I shuffle my feet & my biggest risk is because I can’t lift my feet high enough, so little things, like a throw rug, or that joint in the floor between 2 rooms—my feet get snagged & Ive had so many near-falls that surely it’ll happen one day & for sure the hips will break. I’ve got broken vertebrae & ribs that just decided on their own to break already. And like you, I finally get up out of bed sometime after 1:00, or later, but it’s not without great pain—everywhere. Nobody ever told us that Lewy was going to mean not only losing our minds, but also bring us such excruciating pain & fatigue all over our bodies. Why didn’t they tell us? They didn’t know? They never asked a Lewy patient how they feel? I’m really surprised, you know, because they never talk about this part of it. Never.

    I don’t hallucinate, only once, years ago, but delusions, yes. And I get stuck staring at my laptop, & I’m looking for something but I don’t know what it is that I’m looking for, & I can stay stuck like that for hours, in fact, literally all through the night. I don’t know what to call that. I don’t even know what I’m doing. I need help to get out of bed & help to go to the bathroom, & I have a walker too, but I still need help. I love your description of count all the stars in the sky & then add some & you still won’t have a number for all the symptoms that Lewy has. I like your style of writing a lot. Hugs from a fellow Lewy, GMW

  3. Have u ever tried Voltaren topical gel for your pain?
    Ive tried everything for pain in past 9 yrs., and used BIOFREEZE, but have switched to Voltaren as it works EVEN BETTER!!!
    CHEAPEST at Walmart! But people have been stealing it off the shelves, so sometimes u have to ask the pharmacy dept. EVEN THO it is NOT a prescription!
    It’s $10, but WELL WORTH IT as it only takes 2 drops as it goes a long way, AND it works VERY WELL!

    1. I will try. I just have other things going on as well with my health. Want to ask my Dr. But want to and probably will try. Thank you.

      1. Hi Brian, sometimes I use Voltaren gel also. It comes in a patch too, at least it does in Mexico where we live. It was recently given the OK in gel form by the FDA in the US as an OTC topical pain relief. It gives some really good instant relief but you can’t go around slathered up all the time. I use it at night, right before sleeping, when the pain is really bad. But now I cannot remember if the neurologist said that Lewys can’t take any of the NSAIDs—like, not even Ibuprofen, only Tylenol. Do you remember? On another topic, but still about pain, my vascular doctor (for my DVTs) told me that Lewy Body Dementia & Parkinson’s Disease don’t cause pain! I didn’t say anything, mainly because I wanted to go home & take off all my COVID gear & get in the shower. But, duh, yes, they DO cause pain. But sooooo many other doctors still haven’t read the “memo.” Exasperating. I also take Tramadol 150 mg in the morning & 150 mg around 2:00 pm. It has the added benefit of giving a little anti-depressant relief which helps me a lot. On some days when I totally forget to take it—I’m instantly in a dark endless hole of despair. I got this from the internet: “In addition to serotonergic and noradrenergic receptors, tramadol could exert an antidepressant effect by its ability to bind to D2 and D3 dopaminergic receptors [24, 25] and imidazoline I2 receptors [24, 26]. Many other mechanisms implicated in the antidepressant effects of tramadol were investigated.“ Doctors don’t like to prescribe it, though, because they say it’s addictive. To that, I say so what—my insulin is addictive too—I can’t live without it. Every now & then I do take a Tramadol “vacation” in order to ensure that I won’t need increasingly higher doses—same for the Clonazepam that I take for the REM sleep disorder. My husband & I now sleep in separate beds because of the REM stuff. It’s worked out really well for us both. Kinda sad, but we’re sleeping better & that’s good.

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