Travels with Lewy

Hello my name is Brian Dougherty, go by Doc most of the time. I have a friend who travels with me everywhere I go. His name is Lewy Body Dementia. Sometimes the travels are fine, like any other journey, there are a few bumps in the road but otherwise good. Then there are other days when Lewy Body takes over and the Brian Doc everyone knows is a totally different person. And just for fun Lewy can hijack a good day and turn it into a totally screwed up day.

Most of us who have LBD just call the disease Lewy, like Screwy Lewy. Some of the symptoms include, hallucinations, REM sleep disorder, I either get to beat my wife up or fall out of bed, Changes in sleep pattern, I am up until 3am even with taking sleep aids, extreme dizziness, falling usually on stairs and the latest is rigidity in my bones. There is probably a few I forgot, oops there is another one, forgetfulness at times. Thoughts often have trouble making it to my mouth to get out, sometimes a very good thing.

This blog will hopefully help some people, or at least let them know they are not alone. Tonight I just want to introduce myself let you know about my diagnosis and get the ball rolling to the weekly updates.

My diagnosis was confirmed in November of 2018. It was a long, strange trip but it also brought some peace to my wife, Amy’s, and my life. The trip started with a stop at a neurologist who really only did insurance claims. His physician assistant gave us direction to our next stop, a geriatric neurologist. The PA did do some testing and gave us early indications as to what we may be facing. The geriatric neurologist did some more testing and actually brought another Dr in to consult. They talked and came to the same conclusion as the first doctor’s PA. That there was Lewy Body Dementia in me. They gave me this wonderful news and the even better news that there is no cure and life expectancy usually is 7-10 years. So being the stubborn Irishman that I am, we went to see a third doctor, a neurologist who specializes in dementia, for another opinion. Unfortunately, the diagnosis was confirmed. I was told to stop working. I asked why and the Dr told me that the proteins that are the Lewy Bodies the disease is named for. These proteins affect brain function, especially Dopamine and the Autonomic functions. The autonomic functions cover anything from your bowels and urinary tract, blood flow and other areas. The Lewy Bodies slowly take away a person’s, mine, ability to do basic tasks.

My life is truly a roller coaster. Two days are never the same. Sometimes morning is different from afternoon. On this note, there is one other symptom that I have, periods of absence. I am sitting there and it is just my body, the rest of me is someplace else. I am not mentally in my body. It takes my wife a few slaps to my face to bring me back. I have no recollection of anything happening and am very disoriented. This disease progresses slowly and is also part of the Parkinson’s family and I get to enjoy all of the shakes as well.

This blog will be updated weekly. If anyone has any questions please leave a comment and I will respond as soon as possible. I joke about this to get by. It is my defense mechanism. It is very serious. Robin Williams had this and it is why he committed suicide. There is a documentary called Robin’s Wish produced by his wife.

Lastly for tonight, most primary doctors have very little experience with this disease. It is the 2nd most common form of dementia with 1.4 million cases in the U.S. Yet family doctors have little info about it. If I can help someone, even one person, it will be worth it. It will also help me by having a journal of things for my Dr appointments. I will be back next Tuesday with updates and every week after that. I hope you enjoy the ride along my Travels with Lewy.

14 Replies to “Travels with Lewy”

  1. Thanks, Doc! I have Parkinson’s & LBD. Diagnosed five years ago. I’m hanging in there. I have put myself and my husband through a few difficult days, but we still laugh…so your writing is a joy to me, both informative and uplifting. Sincerely, Cherie in St. Louis

    1. Glad you enjoyed it. If I can help a few people, then it is worth it. It also is helping me. I can use it when I see my doctors.

  2. This is a wonderful way to communicate the mysteries of Lewy! Thank you for sharing. My brother was diagnosed with Lewy 2 1/2 years ago. He doesn’t know anyone rise with the disease. I will share this with him.

    Lynn

    1. I am glad I could help and I plan on posting every week until I can’t anymore.

  3. My name is Tedd . They think I have Leweys. Started in Feb of 2018. I dont know anybody with it.

    1. Hi Tedd, I am not sure if you are on Facebook or not but there are multiple groups that give advice and make some social media friends. Just do a search for Lewy Body Dementia.

  4. My husband was diagnosed a month after you. He will really welcome knowing someone through your shared journey. We found one other couple nearby (northern California) through an online LBD support group through Alz.org for me as Careguver. We had a social distance brunch and the men living with Lewy instantly felt a kinship. You will offer this to many. Thanks Doc.

    1. You are very welcome. There are several groups nationwide who offer support. Some groups are for the loved one with LBD, some for caregivers, and some for both. I encourage you to find one that fits for you two and enjoy the ride. Take things with laughter. Episode 2 will be out tomorrow or Monday.
      Thank you again and God Bless you on your journey.

  5. Thank you for sharing. I was diagnosed with Lewy nine months ago. It was a relief to finally be able to put a name to what was going on with me,
    all the strange things that had been going on with my body and brain for at least two year before diagnosis.

    1. I was in same boat. My doctor thought I was faking. This is the beginning of my blog journey. I have 5 more to share every few days in between.

  6. Thanks for sharing your experiences Doc. Very helpful! I believe my mom has LBD. She was diagnosed with Vascular dementia but has all the symptoms that you describe above (except for the shakes), so we figure she has mixed dementia. My sister and I are her full time caregivers as a stroke stole her ability to care for herself 13 years ago and the dementia is making things even more challenging. Hearing other people’s experiences help us not feel alone in this journey. I’m connected with groups on FB too. Thanks again!

    1. Stay strong. Enjoy the good days, if there are any, laugh when you feel like crying during the bad.

      I have this written down for my wife.

  7. Reach out to us to be on a future Lewy Body Roller Coaster Podcast … check it out if you haven’t listened yet.. free on most podcast apps or through Buzz sprout
    And send us an email if you want to come on a future episode and share your journey and your blog
    LindaLewybodyrollercoaster@gmail.com
    Or my email
    Lindaszypula @comcast.net
    We need to share our journeys so others can find comfort and knowledge especially the medical community

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