Brain mashed

[Jayne1863]

Hi I was diagnosed with PBC in July this year. Apart from the fatigue the problem I am struggling with at the moment is forgetfulness and not remembering simple words. It is really hard to even remember everyday items and this is really becoming so frustrating. Does anybody know if it is related at all to the PBC? It's driving me crazy xx

[Tj2929783]

Hi Jayne,

I get like that all the time. I feel like such an idiot so often, because I can't remember things. I have to write things down all the time. I do notice that the the more fatigued I am, the worse it is. I even noticed that I have been suffering from dyslexia over the past 2-3 years. I never had this before. I believe it is related to PBC. I don't know why, but I am more than happy to blame it as it has caused so many other issues for me. lol

~TJ

[littledragon23 in reply to Tj2929783]

I just know how you feel. Aside from forgetfulness, I also developed some kind of dyslexia over the past 2 or 3 years. However, what frustrates me most is that I quite often experience word finding problems and I had to start writing down a lot of things as not to forget. Since a bout of hepatic encephalopathy I also developed concentration problems. I used to be a very avid (speed) reader which has become a bit of a problem. I very often have to go back several pages as I can't remember what I read. Because of all this I feel more often seriously frustrated.

[SimbaTutor]

Hi, Jayne1863. I also struggle with these symptoms and they are a real pain. I teach students with dyslexia and it is very embarrassing to have trouble finding your own words when talking with parents. In 2004, at a dyslexia conference, I learned that the word finding problem and language mix-ups tend to increase with age, even for those not dealing with PBC.

I understand that excess protein leads to the hepatic encephalopathy complication, so I am trying to balance between enough protein for energy but not so much as to worsen the brain fog.

When the word finding problem hits, I usually stop speaking while trying to find my words. Sometimes I can and sometimes I can't! I don't like leaving sentences hanging in mid-air but I haven't found anything better than admitting "I lost my train of thought...where was I going?" when it happens. My husband has taken to saying "...and....and..." when I stop speaking as he tries to wait me out and also as a cue that I have not finished my sentence. We can only laugh sometimes! He had a stroke 10 years ago and struggles with word finding himself, so we have to give grace to each other each day.

My students recognize the struggles and it helps them to see that others struggle just like they do.

For me, I remember better when I see something, so notes jotted down are helpful. I am finding calendar and day alarms through technology are also helping me keep up with the details of living.

As for the reading troubles, trying taking time to visualize images as you read so that you can recall the images when you can't recall the exact words. It helps comprehension since you have to use both sides of the brain to make the pictures as you interpret the words. It's kind of like making mental movies as you read. The main key is to find what works for you and to develop routines to help with memory fatigue.

[Jojowen]

Yes I sometimes get incredibly forgetful and I just know that I am not going to be able to remember a PIN number or where I parked my car or the content of an essay. What has saved me is that nobody understands that I have no idea what they are talking about and I have become an expert at gleaning vital information from everyday conversations at home and at work. I am also having difficulties concentrating, I avoid situations when I have to do anything for a longer period of time. My dr:s do not understand this at all, I have worked hard with just accepting it and compensating for it (lists, evermote, smart phone apps, telling people I will not remember, writing things down again and again). Once I realised people don't understand what it is like it has become a little bit easier, and I worry less about some things too since I know I won't remember them.

[daff]

I to have situations when i cant continue a conversation because i cant remember the next word at one time it scared me,i didnt no it was because of pbc in a way im quiet releaved to no the cause,i also read a lot and have to go back because i forgot what i was reading.It has helped reading this i now no im not alone.

[Jayne1863]

Thanks to you all who replied I know now that it is something I will have to try and manage. Even writing this I cannot put into words what I want to say as the words won't form in my head. Having a bad couple if days is seems this week x

[liver-bird]

Same here _ family getting used to it and sometimes find my words for me. Frustrating but am relieved to hear I am not alone in this

[MollyMoo]

It is a relief to hear this is a symptom of PBC. My daughter in-law is used to finding my words for me now but on the whole I avoid meeting people etc. It's so embarrassing! This of course doesn't help with depression! When I'm at my tiredness the confusion & lack of concentration is horrendous & I'm not safe to drive. But....it can always be worse! Keep smiling.

[daff]

I gave up driving 5years ago because of this.

[SheepJane]

I too have the same problem of not being able to find everyday words and being forgetful. Its takes me ages now to type a simple email. Like the rest of you I use all sorts of tools to help me to remember things. Perhaps this symptom should go on the official list of PBC symptoms? I find it the most difficult thing to deal with of all the symptoms.

[Lezley23]

I am so glad there is a lot of you out there with the same symptoms. I thought I was getting dementia. I train people at work and I am so embarrassed that I can't find the words I need to say to finish off my sentences.

[hannah1973]

I get brain fog and i cant make a simple decision or be bothered talking. It is horrible and nobody understands it because it comes and goes. Feeling frustrated with extreme tiredness, confusion and generally feeling under the weather. GP said nothing can be done. Consultant has a 12mth waiting list so really not sure what to do, just carrying on I think and put up with it !!