"Tuesday Tips"....

[DonnaBoll]

Does anyone experiences 'brain fog'?

If so , how do you deal with it? Has it affected your job performance at all?

Does everyone know what this is?

[DebatDG9]

When I was working I was able to do all sorts of stuff whilst at the same time rehearsing conversations I was likely to be having and planning and checking all sorts of things. I retired 2 years after my diagnosis. Recently whilst styling my hair I was thinking about what to wear and smoothed hair mousse all over my face! These days I have to focus all of my concentration on what I’m doing now. I have found it frustrating but I am embracing mindfulness and feeling a lot more calm. It may be less productive but as far as an experience it’s much more successful.

[DonnaBoll Administrator in reply to DebatDG9]

My 'Wednesday word' was encephalopathy. Take a look at it. What you are experiencing is so common at any time when PBC is present. It can be very frustrating and what you have chosen to help with this is the very best thing you could do - being mindful. Isn't this an amazing concept?! Women are so often multi tasking folks.... not so much anymore for some of us. Recognizing this is happening is half the battle. Thanks for sharing this with us. It may be helpful to some one else as well.

[Wocket]

I don’t know if it’s brain fog caused by PBC or just me but I keep forgetting the word for things or forgetting what I’m talking about. It might just be me being scatter brains

[DonnaBoll Administrator in reply to Wocket]

I think 'brain fog' might be the right word. It is so common in PBC - and unfortunately as we age. At 74, this can happen several times a day for me. Look at my Wednesday Word for today. Just be aware that this is happening. Maybe even track what exactly and how often it happens. The PBC phone app, I believe, has a place to do this - or any notebook will do as well. If you feel symptoms are more frequent or more serious, then be sure to have a conversation with your doctor. Thanks for sharing with us. Someone else will most likely be having the same occurrences.

[butterflyEi]

Loss of concentration impacts my daily life but with some amusing consequences. In a conversation the wrong word will pop out of my mouth causing much hilarity in the family. As I have mentioned before the difficulty in reading a book but this had lead me to word game apps which regenerate words in my head. I dip in and out of articles and struggle to retain what I learn about PBC. More annoyingly I see something that must be done go into another room and totally forget what I was going to do. With a history of dementia in the family I worry that what I believe to be the brain fog of PBC is in fact the early stages of dementia so I try to train my brain to stay on target. 🙂

[DonnaBoll Administrator in reply to butterflyEi]

Thank you so much for sharing what you're experiencing. This can be frightening when you do have a family hx of dementia. Read my Wednesday Word I just posted. Just be aware of what happens and how often. Recording when and what occurs can be helpful as well for you. Word games are wonderful for keeping our minds sharp. Good idea! There is cognitive testing that is available should you ever feel that what is happening seems more frequent. It may give you peace of mind. I know sometimes when we pretend it's funny, I think in the back of our minds it isn't.

[Readlots]

Lists - I write lots of lists. They really help as long as I can remember where Iput them….

[DonnaBoll Administrator in reply to Readlots]

I love my lists!!!

[nan1012]

I grew up loving to read enjoyed reading books, magazine, newspapers for learning and pleasure. When working and raising kids I would stay up late just to get a few chapters in. In 2010 I started feeling tired and had blood tests that showed elevated GGT and ALP. I was diagnosed pretty soon after with PBC. A couple of years after I realized I was not able to pick up a book and focus enough to keep reading it. One of my doctors suggested I drink more coffee- it was good for my liver, might boost my energy and help the brain fog. I like coffee so it wasn’t too hard to add a cup. It didn’t help with focusing enough to read long passages for pleasure. But this year I had a terrible increase in spinal and nerve pain and increased my gabapentin dose- recently I have read two books! I have also taken time to rest after a hard year in 2023- I am so happy and thankful to have regained some focus and to rest and relax. I’ve had PBC for 14 years and will be 70 this year. I live in Arkansas but have doctors in Memphis, TN. (Donna, I read the PBC Guide by Dr David Jones- it was so informative and encouraging. Thank you!)

[DonnaBoll Administrator in reply to nan1012]

Thanks for sharing all of this with us..So glad you found something that has seemed to help you. One of the members from my other support group lives in Fayetteville, AR. Are you close to there? Would be great if you two could meet sometime. There is group locally in the corner of the '4 states' there. I reached out to her to see if they still meet. Will let you know. Glad you read the book. He will be at The Summit!!

[nan1012 in reply to DonnaBoll]

I am on the other side of Arkansas, close to Memphis, TN. I’m about 300 miles from her. Enjoy your trip to Scotland!

[boneytoys in reply to DonnaBoll]

Please can reconfirm- Where do we get his book ??missed that info..

[DonnaBoll Administrator in reply to boneytoys]

Dr Jones'? On Amazon...

[CeeCee101]

cracking eggs yesterday and put the eggs in the composter and the shells in the bowl. Yes, def brain fog and def need to slow and focus instead of thinking 5 steps ahead. Lists also help.