TRAVELS WITH LEWEY – WHEN THE COASTER CRASHES.

Hello and welcome back to my travels. The last 10 days, for lack of a better word, have been lousy. It started off at a meeting of our writers for the Eagles game. They were supposed to win, nobody told them. We were outside playing corn hole and tossing the pig skin around, listening to Merril Reese.

While we were chatting, I had to sit in a car to cool off and get my wits about me on a few occasions. I really wasn’t sure what was going on. I was still having dizzy spells until Tuesday. My wife took me to the ER with dizzy spells and chest pains that felt like squeezing on the left side.

I was in hospital a couple days so they could poke and prod me as much as possible. Turns out my heart is okay but the Effexor that I take to keep me out of the dark places causes chest pain. I looked it up, it was hard to find but it was there. I must have missed it. My Cardiologist told me to talk to whoever prescribed them to see if there was another drug to switch to.

As the week progressed I seemed to be losing my memory. People I see everyday. I couldn’t find their name in my brains files. I also seemed to be having a tough time finding my way around our little to rowhome for a while. This brought a wicked case of apathy followed by major depression. I am still trying to find out who invited the BIG D to the party but haven’t figured it out yet. Apathy has to be the worst symptom ever. I just don’t care about anything. I am actually trying to use this article to snap out of the funk. It ain’t working. My wife says I have been having more periods of absence, which seems right. Hopefully this ends soon as the depression is back along with different hallucinations which are bigger and more scary tham the others that I have had.

I will be back in a week to 10 days.

Have a great night.

Peace.

Enjoy my story

7 Replies to “TRAVELS WITH LEWEY – WHEN THE COASTER CRASHES.”

  1. Hi Brian, boy your recent experiences really resonate with me a lot. I’ve been very out of it lately. Don’t know where I am, can’t even talk because I don’t know what words are. It’s happening more often & that makes me cry a lot more. I don’t know if those are hallucinations or delusions. I really don’t know they are. I can’t get out of this crying rut I’m stuck in. We got this new BP wrist machine so I was taking my BP because my heart feels wacky a lot lately. I checked it 2 times & both times it said I was in arrhythmia & should go to the ER. But I told my husband, nope, not going to the ER. The concern was that arrhythmia can turn into fibrillation & that can turn into cardiac arrest. But I’m DNR, so what’s the point. I’m in an apathy rut too. I have hobbies, but mostly I just sit & cry. Thanks again for your honesty about what this Lewy stuff is all about. My adult kids don’t care, they don’t call, email, or visit. I had so much fun with them all my life. But now with Lewy, they avoid me. They’re emotionally cold. I miss them. They just say that I’m crazy. It hurts a lot. I’d love to talk about old times with them. But they don’t like me anymore. I’m tired of sending birthday presents, calling them up— they never say thank you & they never answer the phone. Another day down the drain. Hoping next week is better.

    1. I am so sorry to read this. Family is very important. Please feel free to send my posts to them. I know this sounds hard because everyday our brains get a little weaker but try to set your mind on doing one of your favorite hobbies or even just making it through a part of the day without the tears. Even if it is only 10 minutes, then you know you accomplished something that day and the next day add a few minutes. It could help but I don’t know for sure. It is how I beat the apathy and tears. I am 55 and my children are 15 and 12 so for me every night after everyone else is in bed, I break down. I try to occupy my mind but it doesn’t always work. I wish you all the best. I put out a new story of my Lewy about every 2 weeks. Hopefully you can keep me up to date. I would love to stay in touch with you.

      Peace
      Brian

      1. Hey Brian, thanks for the heartfelt words of encouragement. I did actually do some of my sewing hobby today. Just to accomplish a few projects felt good. I made 3 more face masks for my husband. He does all the shopping so he’s the one going out into the virus world, not me. About once every 6 weeks I go with him, just to get out of the house. I have an electric scooter because I can’t walk anymore. I like the scooter. It makes me feel autonomous again. The 2 things that are worst for me is that I no longer have the love or even just companionship from my adult kids. I miss them but they truly don’t like me. Me ex told them all their lives, even when they were little, that I was crazy. That’s what all the men in his family did. They bullied the women. They hate me now because I have dementia. The other thing is that my husband has Tourette’s Syndrome. Fortunately he doesn’t shout out curse words or racial hate words (which some Tourette’s people do, they don’t mean it, it’s bad wiring in the brain. No, luckily it’s a mild case, but it’s still hard on my patience, which Lewys don’t have a lot of usually.) He just shouts my name, or my nickname, or other things, all over the house. So I never know if he’s really calling for me, or not. I get angry because usually he’s not calling for me, and it’s so annoying. And he repeats questions over and over, even after I gave him the answer. His brain gets stuck on the loop. So 2 people with brain stuff in the same house is hard. It’s worse when he’s stressed and the whole world is stressed right now. You’re the first person that I have told. So he doesn’t always act like a caregiver should act when I’m having it rough. Sometimes I think if money wasn’t an issue, we’d all like to live in assisted living, and the loved ones could make appointments to come visit us. I know that I would like it that way. What about you? Hugs and caring to you. Keep writing. It helps us a Lewys lot. GMW

      2. Wow you have a lot going on and should be proud of yourselves for working through both of your brain ailments. I am not ready for assisted living and my wife swears she won’t go that route. If you live in the U.S. there should be state funded assisted living facilities where they just take your Social Security. My prayers are with you. I pray a few times a day too. It is like therapy for me. I hope you work things out. Keep reading and please feel free to share with whomever you like. The more who read, the more thst realize how bad this really is.

      3. Thank you so much Brian. I later realized I never said anything about how you’ve got 2 teenage children. I hope things are going alright for them. It’s gotta be sad and rough for them to have a sick Daddy. You are so young. I can’t imagine what could be going on in their minds. Being a teenager can be hard. Thank you so much for keeping me in your prayers. I’ll try to remember to do the same for you. Remembering when to do things really makes a big difference. I take Sinemet every 8 hours, and thyroid medicine, BP medicine, insulin, prednisone, and Tramadol 100 mg 3 x a day for the pain—my bones break real easy and I’ve got a lot of hip pain, neuropathy pain and muscle and joint pain. Well, I guess I hurt all over. Oh, and clonazepam because of the really bad REM sleep disorder, and supplements like magnesium for spasms everywhere. Some days I forget to take half of the my meds. And I have reminders on my phone, so the alarms goes off and I just turn off the alarm but then I forget to take the medicine. I need to come with a better plan!

  2. Heartbreaking but appreciate your honesty. We must all be heard so reseatch will be done!

    1. Thank you, Darlene. When you crash and crash hard like I did, you should let everyone know of you are able so friends and family know it is the disease and not you operating your body and mind. I am getting a little better everyday.

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