Uncle Lewy

Living out loud with Lewy Body Dementia

a very personal journey……

Matt, CJ and Sheba……

If you are here to understand, catch up or just be with us for a moment,

you’re in the right place


Start Here

If you’re new to Uncle Lewy, this explains why this space exists

What this disease is in non-doctor lingo

Month By Month

Discover how our journey as evolved over time

SIPS BOR

Spousal Immunities & Protections for Sanity Bill of Rights

Recent moments as this journey continues…..

  • Sully walks

    Its 6:11 am, my quiet time I’m with my thoughts, my journal, my first cup of coffee, my herbal tea I am just getting snuggled into my corner, blanket in my lap, reading glasses on Deciding which insence I want for my morning Sully walks out, sees me from the kitchen Yesterday’s mock turtle neck… Read more

  • Crab

    Matt loves crab as much, we’ll almost as much, as I do I saw it at Sonoma Market, asked the butcher “Is it local?” “Yes” “2 please!” What a fun surprise to bring home to Matt I think At dinner time I out the crab out, melted butter, lemon, Caesar salad I ask “do you… Read more

  • New Phase

    So a new phase begins A phase that is trying to honor the new Matt, trying to meet him where he is I know I don’t have all the answers for this new phase, it’s definitely way outside of my wheelhouse All I can do is experiment, try things, take in advice of those who… Read more

  • Mind set change

    *****sadness warning issued on this post******* I am sadly realizing, digesting, the mindset change I need to make It seems to me in this moment it is so key to getting to a better place for both of us This won’t be easy for me to write, it won’t be easy for some to read… Read more

  • He fell out of bed

    It’s something I could see coming We talked to the occupational therapist about being worried about that We lowered the bed by removing the box springs The occupational therapist worked with him on techniques to get in and out of bed He tends to sleep, for what reason I have no idea, on the edge… Read more

  • Changes

    Things seem to be changing, shifting a bit Not long ago, when we visited places or classes which were focused on helping either Parkinson related issues or dementia related issues, group things like classes, etc, all Matt saw were a bunch of old people who he couldn’t identify with Not long ago he felt he… Read more

  • Sully

    No one on the medical team helps with this piece What do you do when a 67 year old man affected by Uncle Lewy acts like a child? Do you get to treat them like one? If not…..then what? This morning I embarked on the daunting post holiday Sunday am refrigerator clean up Not just… Read more

  • Help is on the way….

    This was a doozie of a week You already know of the head spinning drama of the last post or 2 I my effort to execute on my now defined problem statement, I planned to meet up with Mark and his colleague Kirsten outside of the house so we could talk freely, without concerns Matt… Read more

  • Power of a phone call

    I learned a huge huge lesson yesterday A phone call at the right moment can be so powerful, so transformative I am, I admit, a texter, it’s quick, efficient, respectfully lets the other party choose the time they want to respond But a phone call, a moment of focus between 2 humans, sooo much more… Read more

  • ADL’s

    Activities of daily living (ADL’s) Instrumental activities of daily living (IADL’s) Conceptually, I knew about ADL’s, but if you put a gun to my head, I may not have gotten them all right before today I didn’t know IADL’s were defined as such a thing…..but they are Instrumental Activities of Daily Living At this moment… Read more

  • Accountability

    Accountability is important in any relationship, IMHO When you dial it in, it can be a beautiful thing, a thing easily taken for granted Add Uncle Lewy into the equation and it gets confusing Our situation, our marriage, has always been the merger of 2 independent people So in the early years we had to… Read more

  • 68.8

    That’s how many CPE hours I needed to log, take, before New Years I had this on my to do list all fall November I took 8 hours, so when I looked at it, in crises mode, second week of December, I still needed 60 hours Being a numbers person, I calculated how many hours… Read more

  • Pooh Days

    Today was a difficult day, says Pooh Do you want to talk about it? Asked Piglet No, I don’t think so That’s ok, says Piglet, I know what difficult days are like. I quite often don’t feel like talking about it on my difficult days either But goodness, Piglet continues, difficult days are so much… Read more

  • Merry Christmas

    Its Christmas morning, quiet morning here, fresh air from the rain last night The place we stayed the last 2 nights is nestled in the redwoods, in Santa Cruz mountains Its, in a word, beautiful here, I love being face to face with nature, the elements (as long as those elements aren’t too hot or… Read more

  • 111

    This is my 111th post My one hundred and eleventh post (I just had to spell it out) When I started this in June, I had no idea if I was going to be able to keep it up I know I was desperately trying to shift my headspace to a new place We had… Read more

  • Heart rate

    We had quite the week this past week Once our doc approved us for in home therapies, we have seen a physical therapist, occupational therapist, speech therapist and social worker It’s been overwhelming for Matt Many of them were assessments, so that a treatment plan could be worked up We could have started the actual… Read more

  • cookies

    It’s never been easy to convince Matt to go shopping with me You know, mill about, looky here, looky there, girl fun shopping I do, however, have a great memory of him going with me to Barcelino in Sausalito He wanted to buy me something special So we had a bit of a little fashion… Read more

  • A Loss, A Win

    We suffered a loss, Courtney moved out For 2 months we had help, it seemed a good thing But there are things outside of our control, things outside of our reach For personal reasons she decided to go back to Kansas with no clear plan to return It’s a big set back I now know… Read more

  • Prayer Topics

    Just going to come right out and define it, asking for this kind of help we need in a clear way I sooooo appreciate many of you who want to help but geography is a hurdle So for my prayer warriors out there who love and care for us, this post is for you I… Read more

  • Yesterday

    Yesterday was a day I wanted to end as quickly as possible It started with the holdover of some interpersonal dynamics for the day before A realization that the PTSD formed in my childhood was still there, lurking dormently in the dark recesses of my brain I faced this head on early in our marriage… Read more