Have any suggestions - cognitive abilities

[Guest guest]

Decrease in Cognitive Abilities

A while back when I was diagnosed with PCS, I had read an article

describing that patients usually notice a decrease in " cognitive

abilities " , which is about the nicest way I've ever heard anybody try

to put things.

I've noticed that as the disease progresses, my cognitive abilities

decrease (poorer memory and becomes harder to think clearly).

My question is, has anybody else had this problem, and if so, was

there anything that you've been able to do/take to help supplement

this problem?

-Nick

UC - '94, J-Pouch & PSC - '99

[Guest guest]

This is a common problem (technically called Hepatic Encephalopathy or

just HE), and I've had to deal with it too lately. My doctor put me on

Crystalose (powdered form of lactulose) which is supposed to help

decrease the level of ammonia in you blood, and thus help to alleviate

the HE. I think it has helped me some, but it also tends to cause

diarrhea and a generally upset stomach.

Since ammonia is a breakdown product of protein in your diet, it may

help to lower you protein intake also, especially animal protein (I'm a

vegetarian and I think that's helped me avoid problems until recently).

There are other things that can help but others have more experience

with them and maybe they can comment.

athan

[Guest guest]

I have a master's degree in psychology, and though I am in no way an

expert on cognitive abilities, I did learn some things about how the

brain works & how to slow cognitive deterioration in people who are

affected by aging. Research suggests keeping your mind sharp by

doing puzzles such as jigsaw puzzles or " mind teaser " type puzzles.

Also doing math problems, crossword puzzles, etc. I bought an IQ

quiz book at & Noble which has a lot of mind teasers in it. I

have noticed that it helps keep me sharp. I have no idea if this

works for people suffering from cognivite decline as an effect of

PSC, but it seems to work for the elderly.

Sindy H., Illinois, 27, PSC 2007

www.myspace.com/sindyhansen

>

> Decrease in Cognitive Abilities

>

> A while back when I was diagnosed with PCS, I had read an article

> describing that patients usually notice a decrease in " cognitive

> abilities " , which is about the nicest way I've ever heard anybody

try

> to put things.

>

> I've noticed that as the disease progresses, my cognitive abilities

> decrease (poorer memory and becomes harder to think clearly).

>

> My question is, has anybody else had this problem, and if so, was

> there anything that you've been able to do/take to help supplement

> this problem?

>

> -Nick

>

> UC - '94, J-Pouch & PSC - '99

>

[Guest guest]

sindyjay wrote:

>

> I have a master's degree in psychology, and though I am in no way an

> expert on cognitive abilities, I did learn some things about how the

> brain works & how to slow cognitive deterioration in people who are

> affected by aging. Research suggests keeping your mind sharp by

> doing puzzles such as jigsaw puzzles or " mind teaser " type puzzles.

> Also doing math problems, crossword puzzles, etc.

Yes, this does indeed help those dealing with age-related cognitive

deterioration (i.e. a friend in early Alzheimer's benefited greatly from

that).

However, as one who has HE, let me tell ya -- it does nothing but create

massive frustration for me!!! I think there must be a difference since

HE involves toxins crossing the blood/brain barrier (which is not an

issue in age-related conditions). It's not just a simple matter of not

being able to think of a word or figure out how to add 2 + 2.

Regards,

Carolyn B. in SC

[Guest guest]

ndaehn wrote:

>

> I've noticed that as the disease progresses, my cognitive abilities

> decrease (poorer memory and becomes harder to think clearly).

>

> My question is, has anybody else had this problem, and if so, was

> there anything that you've been able to do/take to help supplement

> this problem?

Nick -- This sounds as if it might be HE (Hepatic Encephalopathy), which

a number of us struggle with. I believe there's now a copy of the HE

chart (showing symptoms of each stage of HE) in our files section of the

group website. If not, let me know and I'll send it to you privately.

To confirm HE, you need a blood test for serum ammonia. As your liver

deteriorates, it becomes less able to filter the toxins from your system

(toxins which are produced in the intestines by the normal digestive

process). Ammonia is one of these toxins and is considered a " marker "

for the other toxins. It is easy to measure with a simple blood test.

Keep in mind that because different labs perform the test using

different methods, the " normal range " values are different from one lab

to another. You must go by the normal range provided by your lab.

My own cognitive functions got to the point of not being sure if the

stove was on or off (so my hubby banned me from using the stove!), not

knowing what to do when a car was coming towards me (so I hung up my car

keys, thankful that I hadn't killed myself or someone else in a wreck),

and not being able to figure out how to write a check (my hubby now

handles the bills!). It's very scary and frustrating and disorienting,

to say the least.

My dr. didn't think I had HE, but when the blood test came back quite

elevated, he immediately started me on Krystalose (lactulose) which

definitely helped, but not very much. It also tends to give you

diarrhea. (The idea is that the less time food spends in your body, the

fewer toxins it can produce, so the lactulose zips it through you!)

After a few months of that, my dr. switched me to Xifaxen (a

non-systemic antibiotic which works only in the intestines and which

kills off the bacteria responsible for producing the toxins) which has

worked like a charm!! It has been a miracle drug for me. While I'm

certainly not up to my old level of mental function, I'm no longer a

basket case, stammering out words, flying into rages, and hands shaking

like crazy. I still really don't dare drive (well, not more than 3

blocks in our very quiet neighborhood!), but at least I'm pretty

functional again. I do still read my emails half a dozen times before

hitting the " Send " button! Oh, and Xifaxen doesn't give diarrhea either!

One bonus -- if you have Crohn's (as I do), Xifaxen may throw it into an

incredibly deep remission!! We couldn't figure out why -- after 26

years -- I was suddenly able to eat fruits & veggies without pain,

diarrhea or any other of the lovely Crohn's traits. We asked the dr. if

it could be possible that the Xifaxen was helping the Crohns. Lo and

behold, we were right!!! Last May a study was done at Cornell's Med

school that showed approx. 52% of Crohn's patients benefit from Xifaxen.

Talk about a silver lining to the very dark cloud of HE!!!!!

Regards,

Carolyn B. in SC

[Guest guest]

> >

> > I've noticed that as the disease progresses, my cognitive abilities

> > decrease (poorer memory and becomes harder to think clearly).

> >

> > My question is, has anybody else had this problem, and if so, was

> > there anything that you've been able to do/take to help supplement

> > this problem?

>

>

> Nick -- This sounds as if it might be HE (Hepatic Encephalopathy),

which

> a number of us struggle with. I believe there's now a copy of the HE

> chart (showing symptoms of each stage of HE) in our files section of

the

> group website. If not, let me know and I'll send it to you privately.

>

> To confirm HE, you need a blood test for serum ammonia. As your liver

> deteriorates, it becomes less able to filter the toxins from your

system

> (toxins which are produced in the intestines by the normal digestive

> process). Ammonia is one of these toxins and is considered a " marker "

> for the other toxins. It is easy to measure with a simple blood test.

> Keep in mind that because different labs perform the test using

> different methods, the " normal range " values are different from one lab

> to another. You must go by the normal range provided by your lab.

>

> My own cognitive functions got to the point of not being sure if the

> stove was on or off (so my hubby banned me from using the stove!), not

> knowing what to do when a car was coming towards me (so I hung up my

car

> keys, thankful that I hadn't killed myself or someone else in a wreck),

> and not being able to figure out how to write a check (my hubby now

> handles the bills!). It's very scary and frustrating and disorienting,

> to say the least.

>

> My dr. didn't think I had HE, but when the blood test came back quite

> elevated, he immediately started me on Krystalose (lactulose) which

> definitely helped, but not very much. It also tends to give you

> diarrhea. (The idea is that the less time food spends in your body,

the

> fewer toxins it can produce, so the lactulose zips it through you!)

>

> After a few months of that, my dr. switched me to Xifaxen (a

> non-systemic antibiotic which works only in the intestines and which

> kills off the bacteria responsible for producing the toxins) which has

> worked like a charm!! It has been a miracle drug for me. While I'm

> certainly not up to my old level of mental function, I'm no longer a

> basket case, stammering out words, flying into rages, and hands shaking

> like crazy. I still really don't dare drive (well, not more than 3

> blocks in our very quiet neighborhood!), but at least I'm pretty

> functional again. I do still read my emails half a dozen times before

> hitting the " Send " button! Oh, and Xifaxen doesn't give diarrhea

either!

>

> One bonus -- if you have Crohn's (as I do), Xifaxen may throw it

into an

> incredibly deep remission!! We couldn't figure out why -- after 26

> years -- I was suddenly able to eat fruits & veggies without pain,

> diarrhea or any other of the lovely Crohn's traits. We asked the

dr. if

> it could be possible that the Xifaxen was helping the Crohns. Lo and

> behold, we were right!!! Last May a study was done at Cornell's Med

> school that showed approx. 52% of Crohn's patients benefit from

Xifaxen.

> Talk about a silver lining to the very dark cloud of HE!!!!!

>

> Regards,

> Carolyn B. in SC

>

Wow, thanks for everybody's help! From reading further on the web

about HE, it definitely sounds like what I'm suffering from. I was

kind of shocked to learn that it can get worse.

I code software for a living, which has been getting continually

harder. My fears now lie in the fact that someday I won't be able to

support my family any longer and lose my insurance, unless I get a

transplant. Has anybody had to do this and go on disability?

-Nick

[Guest guest]

ndaehn wrote:

> My fears now lie in the fact that someday I won't be able to

> support my family any longer and lose my insurance, unless I get a

> transplant. Has anybody had to do this and go on disability?

>

>

I'm an engineer and had to go on disability. The HE wasn't as big a

problem at that point (my main reason for taking disability was fatigue)

but I was still worried that I'd make a dangerous mistake. The main

drawback of disability is that now my career is on hold until I can get

a transplant, but overall I think it was a good choice. One thing that

I did notice was that I didn't have as much problem with the HE once I

went on disability. I think this was partly because I wasn't trying to

do as complex of mental work, but also because I was getting more rest,

and so wasn't as tired all the time.

athan