Executive function issues
 

I've had little "issues" off and on and now things have gotten worse. At first I would forget appointments. I thought it was because of my generally busy schedule with work, school, and piano which I dedicate a good amount of time to, and tend to block out the outside world. I've told the dr.'s office staff to call and remind me, but lately they seem to rely on me to do their job.

After awhile, I started having off and on problems with my retention of new stuff. I noticed this again in my piano practice. I've been trying to learn some new music, or really a new section of a piece I've been working on for ages. I work like crazy on Saturday for example, but by Sunday afternoon I'll have to relearn that section all over as I keep making the same mistakes all over again. A week later and it's totally gone to bit heaven as though I've never looked at the music before. This is very frustrating because I really want to finish this piece off, and being one of my favorites, I have the passion now to make it near perfect as possible. I must be tired, I kept telling myself. I also do a lot of sight reading, or I used to. I can't seem to be able to do this anymore as well. I look at the music and have to count the staff lines to figure out the notes that I used to pick off in my sleep. The other day I couldn't even play the simplest thing. I was playing like a first or second year student instead of someone who has studied music and piano for over 40 years.

Then there were little mistakes at work. I know that everyone makes mistakes, but I feel I have to keep my guard up all the time now. These were stupid oversights here and there as I would do stupid things when sending out an order to a customer. I'd forget the bill of lading, forget to add freight to the order, over charge the customer, etc.

Well last Friday I pulled the biggest one yet. This time I completely skipped a step in processing a credit for a customer. The reason for the credit wasn't my fault this time, which was good, but still I managed to mess this up big time. In the process, I ended up sending the over-credit to the customer without consulting my manager first, and to add insult to injury, I didn't follow one of the major steps in the process. This also impacts our accounting system, which we now have to figure out how to fix because of this. My manager asked me what I was thinking and I didn't have an answer. I really didn't know what I did, but I did know something is definitely going wrong here.

Then there is school. I can't for the life of me comprehend what I'm reading or trying to do. The information passes in one eye and out the other as my brain washes the information off like water on a head of lettuce! So for this class I'm done - toast as they say - because I have no clue no matter how much I ask for help, or try to do the stuff on my own. The worsed part is this class also involves math. I was never good in math, but this takes the cake. I can't figure out how to implement the formula into the program.

During this time, I have even destroyed my checking account and ended up bouncing my mortgage payment. I can not figure out what went wrong, and I'm not going to ask for help because I won't understand anyway.

On Monday I had a regularly scheduled neuro appointment. We went through the usual stuff and in the end I told her about this issue. She is, at my request, scheduling an appointment with a neuropsychologist to see if there are some issues. She had me try to do some simple math in my head and I couldn't do it. I sat there like an idiot for what seemed like eons as my brain churned through the simple subtraction problem.

The outcome will be if there are problems is I will definitely stop working and apply for disability because there is no way I can function in the workplace like this. My two job positions require constant brain power, critical thinking, logic, troubleshooting, real attention to detail, and analysis to be done properly.

So now I sit, wait, and ponder on my future. I'm, still planning on my upcoming storm chase in April which I scheduled late last year, but after that I don't know what I'm going to do otherwise. Maybe this is God's way of telling me it's time to stop ignoring what's going on and face the fact that there are issues, and now it's time to give in and let things be as they may.

John

This is tough....
 

and I am very sorry you are going through this. While you are waiting to see what to do next, perhaps you could try the coconut oil that Rick originally posted about here, it has really helped an Alz. fellow in florida. Review that thread and see if you might be willing to try that.

I don't know your age but I do know we all lose brain power as we age. Some more than others, and some at a faster pace than others. Our neuro told us this and although I don't agree with everything he says, I do think he is right on this one. Also, I know I cannot think worth anything when stressed, and perhaps this is affecting you as well, and you do not realize it.

Whatever is going on, try to relax as much as possible and enjoy what you have today. You are wise to think ahead for the future, but you cannot let what "might be" ruin what you do have today.

Hi Lurking,

I'll look into the coconut oil and see what that can do for me. I'm only 47, which really scares me because this seems to be happening more over the course of a year or so. I've always been sharp as a tack when it came to critical thinking and such.

I agree that stress can play a big part in a lot of things that happen. I do know that driving is taking its toll on me now particularly with it begin winter and snow all over the place. I'll try to relax, but you know saying one thing and doing another are two different things. ;)

Thank you for the suggestions.

John

agonists?
 

hey jcitron -

are you taking agonists (mirapex or requip)? I had similar troubles when taking one, then the other. I am off agonists now; my mind is much more clear; I can sit down and read a book for long periods of time, (improved concentration) and my memory is back on track. Still have trouble multi-tasking.

just wondering ....

Hi Carey,

I'm not taking the agonists. I did before when I first started this journey and mirapex did "wonders" on me. I was a walking zombie-twit. I also have trouble mult-tasking, which isn't a good thing where I need to jump from order processing to technical support all day. It's now taking me longer to finish either task properly. Is the old brain slowing down too like the rest of everything else?

In case you're wondering, I've been sent for blood tests to check my TSH, B12, and Foliate just in case these are off.

John

Multitasking
 

This is not a slippery slope, John. From what my docs have told me, and some research people when I've been in studies, the great majority of PWPs have some degree of executive function loss. A lot of doctors don't know it yet, or attribute it to other things. Fortunately, it's in the cortex, or outer layer, of the brain that multitasking is done (google "anterior cingulate cortex"), and there are a LOT of pathways possible there so we can work around them and build new pathways and recover some of the function. The actual motor function of the fingers--I'm sorry, but there are not so many extra cells in the back of the brain where the motor layers are and so it's more difficult to find any extra cells to make new pathways. Anhow, other people catch up to us in the memory function loss, and we can end up better off than them because we've been fighting it so long. To oversimplify.

I had a bad time with Mirapex, but Requip is okay for me.

Coconut oil is high in cholesterol, isn't it?

Jaye

you retain your intelligence
 

John - I'd love to hear the results of your tests.

"Bradyphrenia" (slow thinking) is a symptom of PD; your brain does slow down just as the rest of you does. Maybe the key is just realizing that, and trying to do things at a different pace.

It's a tough one; really hard to adjust to when you've been super confident/competent and fast for your whole life! Remember - you are not losing your intelligence!

Speed
 

John-

I'd be reluctant to accept the inevitable. This seems to be happening awfully fast for PD. Have you done any kind of timeline analysis to see if there could be anything else at work? Don't discount the job stress either. Two jobs and you chase tornadoes for a break? I gotta shake my head and admire you all at the same time. :)

My latest bandwagon might be worth thinking about. Mycotoxins from mold and other fungi. Has there been any increase in dampness where you work or live?

Keep a food diary for a week and see if anything correlates. And have they ruled out little strokes?

Stress
 

I would really emphasize the effects of stress. If you even THINK you are losing it, your brain will hone in on every little thing that you could have done better, faster, more completely, etc. It will weigh heavily in the back of your mind and you will not even realize it. Then, when something like the work mistake occurs, it will all come flooding out and overwhelm you. You will convince yourself you are inept.

A dear friend (a professional counselor as well) gave me a book called "Why Zebras Don't Get Ulcers", written by a doctor/psych who would lie awake at night, usually around 3am, convinced he was developing a terminal brain tumor (as opposed to the friendly, non-terminal type of brain tumor!) At any rate, every night, he would imagine the tumour bigger, taking over his brain, wreaking havoc with his mind, so that every headache, eye itch, twitch, lost thought, etc., only confirmed all the more what he feared. He didn't have a brain tumor, but he did drive himself damn near crazy convincing himself otherwise. He wrote this book, which delves into our stress-filled lives and ulcer-ridden tummies. It was very, very enlightening. The body will actually manifest stress with physical symptoms even though there is nothing physically wrong. Incredible.

Lots of folks here have recommended Tai Chi, meditation, yoga, etc. These are good for anyone but especially those suffering from anxiety, worry, etc. Also exercise is very good, if you can manage it.

Put a plan together of the steps you are going to take to manage this concern and stick to it. Keep a journal and after a few months, review it. I would also journal in when you go to sleep and wake up, what you eat and when, and what kind of exercise you do and when you do it. This will help provide a clearer picture of how things are going. Good luck.

John,
Your post is what I would have written a few months ago if I were to describe my executive function status, just have to substitute a few of my activities in place of yours. Needless to say I was/am worried. So you have company if that means/helps you! I think I found a way to deal with the situation (atleast for now).

When i was going thru difficult time, job stress was a big issue. So I took time off (one year) from my job assuming that my everyday stress will be less. That was a big mistake. I love what I do, and giving up a job that I am so passionate about (though stressful) was devastating and a constant reminder of PD.This state of mind made PD symptoms worst and that made me more anxious. I was not sick enough to stop working, but not the same as before to work. Caught in a vicious circle and I had to get our of that.

So I decided to get back to work knowing fully well what my limitations are. Now I have a small note pad (paper) and an electronic organizer/phone that I carry with me all the time. I write everything down, inclusive of taking meds, have my husband and daughter write in there whatever they need from me, same goes for my colleagues and my boss at work, I write down or ask them to send a mail which i transfer to my organizer. I have alarms set for every 2h (at work0, reminding me to check my "task files". As far as the bills and appointments go, I have them in my organizers as well as written in a calender in my closet. I synchronized all my bills to 3rd of every month so they all go in one stroke. I set them to be automatically charged to a specific credit card/bank account so my payments are made to one company and if I still forget there is only one penalty! Though it took me a few days to set these things up, its worth it.

As far as memory for studies, when I read a paper, after two paragraphs, I stop and think and write down the summary. If I have to remember information or numbers I make patterns of remembering. For exmaple, my phone has changed now, I still remember my old number that I had for over 10 years. SO for my new number, I created a pattern or associated with a number that I wouldnt forget (Birthdays etc) and use a bit of logic. It may take me a couple ofminutees to remember my number, but I do remember now!

Work related tasks: Once again I write down all the detials of my expts, keep chekcing them as I finish that task. I donot know if this line of processing information would be feasible for you especially for music. All I can say is frustration over inability to do tasks I took it for granted, made my situation worse. A few things I had to let go, like working in the lab setting up experiments, right hand cannot hold test tubes and petridishes and I was becoming hazardous to the lab> I still do but for a short time.
Overall, this sort of organization and getting back to lab made a difference to my psyche, and of course Azilect came at the same time. THis combination is terrific, got back my life, I feel a lot better and the family is happy! On the professional side, i submitted a 5 year grant to NIH which made me feel better about my brain!!! its still there!
I already wrote a long and detailed account, but if you want to talk more just send me a private message.

I hope you figure out what works the best to keep you going.

Girija



QUOTE=jcitron;445745]I've had little "issues" off and on and now things have gotten worse. At first I would forget appointments. I thought it was because of my generally busy schedule with work, school, and piano which I dedicate a good amount of time to, and tend to block out the outside world. I've told the dr.'s office staff to call and remind me, but lately they seem to rely on me to do their job.

I had a regularly scheduled neuro appointment. We went through the usual stuff and in the end I told her about this issue. She is, at my request, scheduling an appointment with a neuropsychologist to see if there are some issues. She had me try to do some simple math in my head and I couldn't do it. I sat there like an idiot for what seemed like eons as my brain churned through the simple subtraction problem.

The outcome will be if there are problems is I will definitely stop working and apply for disability because there is no way I can function in the workplace like this. My two job positions require constant brain power, critical thinking, logic, troubleshooting, real attention to detail, and analysis to be done properly.

So now I sit, wait, and ponder on my future. I'm, still planning on my upcoming storm chase in April which I scheduled late last year, but after that I don't know what I'm going to do otherwise. Maybe this is God's way of telling me it's time to stop ignoring what's going on and face the fact that there are issues, and now it's time to give in and let things be as they may.

John[/QUOTE]

On line cognitive screening test for verbal memory/ executive function
 

The dept of neurology at the University of Florida offers an Online Cognitive Screening Test which measures Verbal Memory and Executive Functioning and is easy to take. Maybe this could offer some insight. You will have to google it, since I don't have enough postings to paste urls

stress
 

I just want to echo and emphasize what every other poster in this thread has said about the role of stress in exacerbating symptoms - physical and mental. Reducing stress, I'm convinced, is the number one thing I've done to improve my health and impact of PD on my life.

No easy or generic ways to do that; stressors are different for everyone. But identify and deal with them. Sometimes you have to be selfish; sometimes you have to be hard on yourself; can be difficult, but worth the effort.

John, I have begun to forget so much that it scares me too. I can start a sentence and by the end of the sentence I have forgotten what I was talking about to begin with and can't finish the sentence. It is scarey, but then you already know this.

For example: On January 2, 2009, I was cooking at my daughter's and needed a potholder. Now I know my daughter's kitchen, but that day I couldn't find anything. It was like I had never been in that kitchen before. When I needed that potholder, I stood in the middle of the kitchen, with my daughter watching me saying, I need a ?, I need a ?. It was five minutes before I could remember the simple word "potholer."

The only suggestion I can make is this that you may want to consider at some point in time: During 2008 I began to have serious thinking problems and I became very poor with handling my finances, which aren't much to begin with. By summer I was getting desperate, I wasn't able to correctly pay my bills, and my car payment became a serious problem. I was told about Mental Health America's Designated Payee program. I applied for the program and now my bills are paid by someone else using my money. It has been a God-send for me. It is a relief to have this problem, which I can no long do on my own, in someones reliable hands. I can't afford a bookkeeper and MHA is free...no fee!!

I can relate to the problems you have learning and playing music. Yes, stress makes things worse, but if I am performing, there will be some stress. I don't perform any place fancy- just recitals with my students and I play in a coffee shop once a month for tips. If I try to play anything from memory, my mind will go blank at some point, so I always play from music. Even with music, my mind will go blank at times and I feel like I am sight reading. At least with the music I can sight read which is better than nothing.

My neuro recently prescribed Exelon for me. I have been having a big problem with getting lost. If traffic is backed up and I try to take an alternative route, I always turn the wrong way. I told my neuro that I hope the Exelon will help me make fewer mistakes when I play guitar. Here is his reply from an e-mail:

"There may be other medications that can help your memory. We should give exelon a chance first. Some patients with memory problems can improve by playing memory games, learning a new language, etc., This is a typical stragegy we use that be effective however, I think your guitar playing and teaching is doing the same thing. That being said, I do have patients with neurologic disorders functioning at very high professional levels and they will still report benefit from the "mind Games" they play on a computer. If you are interested and can't find any on your own would be happy to contact some of these people and find out which programs they prefer."

Aricept is being RX'ed for PD now.

It might be something to check into. It was amazing for my dad.

You are so right Curious. I am checking into that and Rasagiline on my next Neuro visit.

Stitcher, my dad had no bad sife effects from Aricept. The good ones, his memory was sharp as a tack. Things he never thought he would get back, like his childhood. The short term improvement, I can't even tell you how great that was. No more forgetting the little things or his meds!!!!

:hug: I hope you find something that works for you Stitcher.

First I want to thank everyone for their thoughts and suggestions. I will try some of them including an electronic datebook. The device will only be good if I remember to put the information into it! As it is, I missed another appointment this morning, which had the office staff a bit more confused than I was! That happened even after writing down the appointment!

Right now I e-pay my bills so they're all set. The only thing I have to watch is that I don't spend too much cash. For that I've removed my bank-card from my wallet and only carry enough cash for lunch out once a week and gas for my car.

At work I take my time. My job isn't that stressful even though there can be days when it gets busy. Other than those odd days here and there, which for me are a good thing because it makes the days fly by, I'm pretty quiet and allowed to do what I need to get done as long as it gets done. What's been getting me is jumping from one subject to another, which confuses me lately.

I've been handling these two positions for the past 5 years without problems, and now with the economy the way it is, the order side is less than busy if there are any orders at all. If I attend a meeting and there are more than three bulleted items, I can't seem to remember the first one, which usually pertains to me. I've noticed this odd problem when retrieving voice messages or understanding a phone call. At first I thought I was having a hard time understanding the voicemail, but that isn't the case. I'll forget half of the message as I listen to it, or get it so scrambled in my head that it doesn't make sense at all.

Stitcher,
I haven't gotten too lost yet, or at least I've been able to recover my mistake. I've always had a good sense of direction so maybe this helps at least right now. The losing of words happens to me more often than not and that really bugs me because I've always had excellent verbal and writtne communication skills.

Totade,

Thank you for the post about the online memory test. I took it and my results are:

"You scored "Low Average" or "Low" or "Very Low" on one of the tests. This indicates that you may have a cognitive problem. You can take the test again if you like. If you continue to score poorly or are concerned about cognitive symptoms, you should consult with your physician. ...."
Note that this test is only a screen, and the results do not necessarily mean that you do or do not have a cognitive or a neurological problem.

I know there is the disclaimer in there, but this reflects pretty much how things are for me right now. Remembering things from a previous time and being able to react to changes are the two areas that give me the most trouble, and are the two areas where I need to remain alert at all times.

My technical job requires absolute consise troubeshooting skills, logic, and critical thinking. My not-so-technical order administrative job requires performing tasks in a set procedure. If I screw up the first job, I can ruin the network settings and the servers. If I screw up the second, I cause company embaressment and make myself look like a total twit because I have to send out appologetic emails to the customers.

To be honest, I really thought this was related to sleep issues, which I've had before off and on. But the thing is, I've been sleeping pretty well the past few months. I go to bed early, I make sure I empty my bladder before I go to bed so that doesn't wake me up, and I've stopped eating ice cream at night, which was affecting my medication (absorption and protein). Once in awhile my cat wakes me up because she wants to snuggle under the blanket, which seems to be way more often that not because it's so cold at night. The fact that she's sleeping with me again proves that I am sleeping at night because for almost 9 months she wouldn't even set foot in my room at night.

Rich,

The storm chasing isn't that stressful. It's actually quite an exciting and beautifully enlightening experience. The sky is dark against the gold and green field below and the swirling and boiling clouds above make this a very humbling and awe inspiring experience. I've always been interesting in weather and other natural phenomenon so this is another aspect of the same subject. I've always wanted to see a volcano too, which I did on my first trip. It was a dormant cone in New Mexico, Mount Capulan to be exact, but it was my first volcano visit.

Anyhow, keep posting the suggestions. I'm open to any one of them at the moment. This is quite a bummer because my mobility is the best it's been in years and I am actually feeling pretty good physically.

John

John: All of the advice given is excellent.
Mine is extracted from yout last sentence,,DO'NT GIVE UP! Bob C

I have Dementia with Lewy Bodies, which is a PD sort of diagnosis that emphasizes the cognitive problems over the physical problems. I was in a high-tech job (i.e., computer programmer). I just couldn't do that work anymore so I retired at the age of 57. I don't miss the work but I do sort of miss the social aspects of having a job.

If you haven't been diagnosed yet, it's a good idea to check your insurance. I had a policy that replaces my income and pays my retirement to the age of 65. I'm really glad I had that policy.

What folks say about stress is definitely true. You need some, but too much can make you miserable. Stress is hard to define, but you sure know it when you feel it.

I don't think I read anyone mention having a positive attitude. Don't give up or give in or even start to think that you are no longer in control of your life. Keep finding ways to enjoy life. Try to live your life to the fullest extent possible. You have to define that for yourself.


My medication list:
Excelon (rivastigmine) for cognition
Cerefolin NAC for cognition
Sinemet (levodopa/carbidopa) for movement
Requip (ropinerole) for movement
Melatonin for sleep

K. Ibsen- When you started the Exelon, did you notice a difference- that it was helping? Do you use the patch? I just started it recently.

Chicory

Aricept
 

Just reading this thread -- Aricept did not work for my dad and his alzheimer's. And he had bad side effects (diahrrea, bad temper) :(

Sigh!