Travels with Lewy – What Will Work Today

The first thing I try to figure out everyday is “what works” and “what doesnt”. It is probably the hardest question I try to answer everyday. There are so many things Lewy affects that going through them all is near impossible. I find it easiest to start at the top with big things. Brain, about 2/3, taste, works different than yesterday but still works. Sight and smell seem ok. Neck, as long as I don’t turn it too far, so ok. I do with the rest for my midsection then my legs, feet, and lower midsection. I hope you get the point. It can take up to an hour and when I get done, I want a nap. I don’t take one because I have to help around the house, decide on dinner, and play with the dog. So if I feel ok, I skip some things and if I am lucky nothing will happen. It is fair to say, I am not a lucky man.

So something screws up, what do we do now. Depending what it is, that depends. And I use the word depends in more ways than one. If it is in my head, I am done for the rest of the day. The brain is our computer. It figures out what we need to do on each occasion. When that malfunctions, and Lewy loves to play with our brain, we are not the same, we need help to do basic tasks. This is when we are most affected. The only other thing that could cause as many issues is chest pain. The reason is because it may be a heart issue and then the Doctor says go to the ER. Once in the ER, we get the comfort of a roomful of doctors that we are explaining Lewy Body too with one in the corner googling it. By experience I have come to realize ER doctors don’t know diddly about LBD.

Female Asian Chinese woman nurse OR staff surgeon holding surgical anesthesia mask tube dressed in safety gown scrubs and performing operation in operating room medical facility hospital healthcare

Next is wasteline and above. This is another crucial area. It includes, small intestine, kidneys, bladder, liver, pancreas and more. These organs have to work properly too. If not and they jam up, it could be crucial to our health. I am not going to go over all the issues because they are a little bit disgusting.

Me in the back with all my advocates.

The last area is the bottom of our body. Feet, legs, hips and bowels. This area can also be disgusting as well and I can attest to it as my bowels don’t work well at all. They do work but only when they want to and with no warning. Doctors have tried a few medicines but none have worked so I wear a sanitary pad. There are other things but that is the worst. As Lewys we need to stay on top of our own health. There aren’t many neuros in the ER so we have to be our own spokesperson and know what meds may mess with other meds. This is difficult for me as most days I can’t complete full sentences correctly unless it is in a text or typed. That is why I have the most beautiful and smart advocate, my wife Amy. If you do not have an advocate, please get one. They can literally save your life. If it is a matter of dollars, contact your local government offices or ask your doctor and neurologist. They are there to help you. Having the worry of money or no advocate can put a toll on your health.

Young woman feeling worried after checking COVID-19 symptoms online and staying home for safety

Lastly try your best to interact with others as often as you can. This really helps me. Even if it is just talking about the game, the weather or whatever floats your boat, talk to someone each day about something other than Lewy. It may do wonders for you. I hope everyone reading this has had a happy and Blessed Easter. See you next time on my Travels.

One Reply to “Travels with Lewy – What Will Work Today”

  1. Thanks Brian for your honesty about this roller coaster. You’re doing a great job snd you have a lovely family. I’m sure you know how special you are. Our LBD group is so lucky to have you.
    (Nancy Guerro)

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