[CarolynS]

Okay, my eldest daughter and I went Christmas shopping Saturday this past weekend. She will attest to this because I know it surprised her...I am having a harder and harder time finding works. If this is a sign of impending dementia I am PO'd, to put is nicely!

How does one know if this is a fact or not. Or is it must my age; I turned 62 two weeks ago.

I have been doing crosswords every time I go somewhere that I have to sit and wait; e.g. a doctor's office. I also do crosswords three times a week when I am sitting and waiting in the pickup line at two schools, then I do crosswords while sitting at my daughter's until she comes home from work; three more hours. I also do brain games on the computer several times a week.

It is scary and irritating.

OT for this post, but brought a smile to my face and a chuckle. We stopped at Borders since my 12 year old granddaughter had a "I want" list that contain ONLY 27 books and nothing else! (Eating and reading compete with one another). I believe that if she didn't have to eat, she wouldn't. I guess this is what happens when you have two parents who are English graduates in the family; one a Masters and the other a Phd Professor.

When we arrived at Borders my daughter said, "there's a parking space. I parked in a vacant disability space, which surprised her. She said, "this is not the space I meant." Now my daughter has never been shopping with me; at least not for a very long time and PD never comes up in conversation. When we exited the store and she had to walk very slowly to "keep up with me" she said, "well, I guess it was a good thing we parked there." I just chuckled to myself. She had no idea that walking a long time, etc. was hard for me to do.

[paula_w]

People , even relatives, tell me, 'I feel guilty using this space." My answer is always the same, 'I earned it."

[Conductor71]

Originally Posted by digger

Okay, my eldest daughter and I went Christmas shopping Saturday this past weekend. She will attest to this because I know it surprised her...I am having a harder and harder time finding works. If this is a sign of impending dementia I am PO'd, to put is nicely!

How does one know if this is a fact or not. Or is it must my age; I turned 62 two weeks ago.

I have been doing crosswords every time I go somewhere that I have to sit and wait; e.g. a doctor's office. I also do crosswords three times a week when I am sitting and waiting in the pickup line at two schools, then I do crosswords while sitting at my daughter's until she comes home from work; three more hours. I also do brain games on the computer several times a week.

It is scary and irritating.

Digger,

Don't despair; we all have our what I used to call senior moments is now just a PD moment! Just know that you are not alone...my friend who has YOPD (he is a mere 31 yrs. old) were chatting online in Facebook one evening. We started to discuss the whole Rush Limbaugh assault on MJF that happened several years ago. We both drew total, utter blanks on Limbaugh's name; mind you this is our arch nemesis, right? We both agreed that we wouldn't cheat and Google it but just sweat it out until our synapses started doing the right thing. Meanwhile we move the conversation forward, but it was clear that our thoughts were a million miles away; we both ceased typing...you could just feel all the mental effort. The silence between us was laden with an "OMG! this is the beginning of dementia!) Finally, my friend offered up Rush L's name with admitting that he was so freaked out that this was the beginning of the end that he cheated with Google. It was extremely funny because our fears just sort of fed off one another. He could recall no part of his name, and all I could muster was "starts with an R".
We still laugh about that.

Oh, and in true paradoxical PD fashion, I can remember nearly 300 student names at work each week but can't recall Limbaugh? Too funny.

As for brain boosters...the word puzzles are good but, from what I have read, we have to do completely unfamiliar, new to us things, like sudoku, knitting, or a language to make the most of our existing neurons. Maybe I am wrong? I tend to gravitate to word puzzles too :-) Hey, at least we know they can't hurt us!

Laura

[rose of his heart]

Yep, word finding difficulties is one of a few wallflowers at the dance of early stage PD, and she's growing up fast. By the time this dance is over, she will have joined most of us. Other common cognitive changes in PD include sequencing errors (after your baby brother was born I immediately fell pregnant with you), short-term memory problems and processing difficulties.

Now, as you wisely note, lots of olderish people experience cognitive changes, whether they have PD or not. The questions become, Are the cognitive changes I am experiencing consistent with most people in my age group? and How do I know whether these things are new or just that I am noticing them for the first time? Especially as well-meaning relatives try to minimize our worry and shore up their denial by saying things like, "it sucks to get old, doesn't it?" or "you always were a little different." So who knows?

Turns out those nerdy students who sailed through statistics while you thought you would die of humiliation and boredom know. They are the ones you should have paid attention to instead of that string of guitarists. They went on to become neuropsychologists. Paid. With benefits. They have perfected the art of multiple choice questions that ask the same thing sixteen different ways to Sunday. And they can interpret your answers too, even if you try to throw the test.

They know when you've been bad or good, so be good. They can tell when you're trying to hide or inflate your deficits. They can tell when you've thrown up your hands in frustration, closed your eyes and guessed. They can see through your cheerful cooperation to the dark spots in your limbic brain where optimism doesn't always shine. They can tell how intelligent you are, what areas of cognition have likely changed (even if it's your first testing) based on norms of one area's score against another's, and how much "reserves" you have left.

They're useful, if a little scary and irritating to your sense of having a unique multidimensional self that is not measurable by 6 hours of surreal interviews, bubble filling and block rearranging. You aren't burdened by one of those are you? Good, then let's continue.

They may help or hinder your disability claim, shore up or demolish your dreams of a different, more flexible, less stressful career. Or both. In my case they identified and quantified deficits that were significant enough (along with physical symptoms) for me to have understandably abandoned my career and they concretized the SSA's prediction that I will never be able to return to my career, which still strikes me as unnecessarily blunt and indelicate. As if I didn't know that already.

The test results and the increasingly adorable geeky PhD also shored up my confidence, both in the "raw intelligence at baseline" as well as my "substantial reserves." I really would have benefitted from realizing the former earlier in my life, when I walked around thinking absolutely everyone could out-think me any time of the day. The latter comforts me, and inspires empathy for others who lack it, as I likely will join their ranks one day.

The results also tell me that the SSA's suggestion that I might thrive in a new career folding laundry (this, despite my history of frozen shoulder, pain, rigidity, etc.) is ludicrous. I would die of boredom. Or, possibly, find enlightenment by transforming my experience into one in the karma (work) yoga tradition. Who knows?

Well, probably the increasingly attractive geeky guy I ignored in college.

Good luck to you and your daughter. How lovely that you have each other for this long, strange...um......uh, train, no, um, o yes, trip.

Rose

[stevem53]

I have extreme difficulty finding words to explain things, things as simple as giving someone directions to a location a mile up the road, in the little town I grew up in, and have lived in all of my life

It happens often when I am posting here..I get stuck on a word to describe how Im feeling, and sit here for 10 or 15 minutes trying to spit out the right word to express myself properly

Get in an argument?..Blaaaaaaaaaaaaah du du duuuuuh blaaaaa duh duuuuhhh..Ahhhh, fugetaboudit!!

[marciaj]

I'm finding it hard to read long posts and I love to read! I can't seem to concentrate on the post and find myself skimming through. I find now I can't read books when I lose interest in the story where I used to be able to finish anything.

[jeanb]

Originally Posted by marciaj

I'm finding it hard to read long posts and I love to read! I can't seem to concentrate on the post and find myself skimming through. I find now I can't read books when I lose interest in the story where I used to be able to finish anything.

Marciaj, I'm also having difficulty concentrating trying to read. I start to skim and then lose the point of the book. Now I'm listening to books on CD. I put them on my ipod and listen with earphones or with speakers. Also, when I'm on a plane I plug in earphones, turn on the recorded book, and somehow listening to a book puts me to sleep where listening to music will not.

Jean

[GregW1]

With regard to the difficulty in concentrating for significant periods of time, skimming books that you would once have been absorbed by, and being unable to sit through a movie or perform a lengthy task without getting up and moving around or doing something else, may I ask if either one of you takes either Mirapex or Requip? Both of these have been associated anecdotally with the problems you have described.

I took Mirapex for the first seven years after my diagnosis. Once a bookworm, I found I couldn't read a book without losing interest. I couldn't sit through an entire movie, even at home. I had trouble getting enough sleep: I once participated in a sleep study in which a device measuring my movements was attached to my wrist so that the doctors could tell whether I was sleeping or awake. At the end of six weeks the researchers informed me that I had slept an average of two hours per night, and had never reached stage 4 sleep over the entire period!

I stopped taking Mirapex in 2004 mostly because of the cost. My ability to concentrate returned almost immediately - I read a few books a week, and can read for hours at a time again. I can sit through movies and not feel antsy or lose interest. Instead of sleep deficits, for several years after quitting Mirapex I was sleeping in excess of eight hours a night. Unfortunately, as the disease has progressed I have more trouble sleeping, but still get several hours more than I did on the agonist.

I don't know if this applies to either or both of you, but that was my experience and it might explain the problems you describe. Good luck.

The only down side for me in stopping Mirapex was loss of energy. This problem has increased as the disease has progressed, but I find that except for late at night, physical activity coupled with tea or some coffee goes a long way toward ameliorating that feeling.

Greg

[GregW1]

Originally Posted by digger

...I am having a harder and harder time finding words. If this is a sign of impending dementia I am PO'd, to put is nicely!

How does one know if this is a fact or not. Or is it must my age; I turned 62 two weeks ago.

I have been doing crosswords every time I go somewhere that I have to sit and wait; e.g. a doctor's office. I also do crosswords three times a week when I am sitting and waiting in the pickup line at two schools, then I do crosswords while sitting at my daughter's until she comes home from work; three more hours. I also do brain games on the computer several times a week.

It is scary and irritating.

Digger - I am 59, as of last Saturday in fact, and I have the same problems that you described. I too have worried about the possible beginnings of dementia. But I think unless there's more to it than what you have described, it sounds more like the kind of memory loss and cognitive decline associated with age rather than Parkinson's dementia.

Most of my friends are in their late 50s or early 60s. They all complain about memory loss - and since they don't have Parkinson's, they worry about Alzheimer's. I have been through full-on neuropsychological testing twice, the second time about four years after the first. In both cases the doctor found no evidence of dementia. In fact, the results of my second examination showed that my overall cognitive skills had improved since the first test. The neuropsych gave me some very useful information. I pass it on to you for what it's worth.

First of all, gradual cognitive decline short of dementia has its particular features, but it greatly overlaps with the declines that result from aging. For example, in both tests I had real difficulty remembering associated items spoken to me by the tester - he would rattle off 100 words relating to four activities such as grocery shopping, buying clothing, a trip to various places in a city, and gardening tools. When it came time to repeat them back to him, I think I was stumped at about 14 words. I was appalled. But then he read off 200 words which contained the original 100 mixed in with an additional 100 he had not listed, and asked me to tell him which words were new and which were among the original 100. To my great surprise, I correctly identified 198 of the 200 words as being either original or new. The neuropsych explained that as people grow older their ability to independently retrieve words filed in their brains is significantly diminished, but the words are in fact up there in the files. "Verbal cueing" in non-demented patients almost always results in the quick retrieval of the information. it's like an older computer that needs prompts to locate information files.

After three days of testing I got a 16 page report assessing my neuropsychological health. It was clear that Parkinson's had taken a toll - on measures of executive function, multitasking, and planning and executing complex tasks to completion I was below baseline. Other functions, however, were generally unaffected or only slightly impaired. The thing that I was worst at, terrible in fact, was my ability to solve problems by identifying patterns of information and approaching the problem from other angles when one approach did not work. I stubbornly kept trying to solve the problem using the same 2 or 3 approaches even though I knew they had already failed. In fact the student who administered that test said (probably ill-advisedly) that if my baseline intelligence was not relatively above average, some of my friends might begin to wonder if I was a little "slow."

But the report, and this was confirmed verbally by the doctor, indicated that my general level of intelligence had not measurably declined. As he put it, most people with Parkinson's with cognitive decline short of dementia suffered primarily from "bradyphrenia," meaning literally slower thinking. My general intelligence, as measured by the power to reason, to integrate discrete ideas into a new whole, and to conceptualize abstractly, were all intact. He gave me an analogy, comparing neurological processing to the ability to physically get from a specific corner in one city to a particular corner in another city. If we set out at the same time we would both get to the same spot in the second city, but he might get there minutes or hours ahead of me depending on the distance that had to be travelled. My brain continued to process information pretty much in the same way it always had, but the process had slowed. A mental bradykinesia, if you will.

Four years later, 3 years after leaving my job and taking LTD because of poor performance due to PD, I took the same neuropsychological test. Though my Parkinson's had advanced, my cognitive skills had actually measurably improved. I asked him for an explanation. He knew my work history and what I had been doing with my free time since going on disability. By the time of the second test, I was involved almost full-time volunteering with various Parkinson's organizations, work that involved travel, new experiences, and challenges. He knew that I was happier, had met a new partner (hi AJ), and found the work that I was doing to be meaningful. He said, as if it should have been obvious to me, that my brain was more engaged, and that because I found the work meaningful I was both intellectually and emotionally invested in it, derived greater satisfaction from it, and therefore my mind was eager to engage in problem-solving in a way that it had not been for many years in my former occupation (lawyer). Like physical exercise, you do it more often if you enjoy it, and the more you do it the better shape you're in.

As an old hand on this forum used to say, "if you want to keep moving, keep moving." To this day when I am physically "off"- and because of protein interference with my medication this happens at least once a day - and I feel the most slow and rigid, I find some kind of housework or physical task to do, even though what I really want to do is nothing at all. I almost always come back on to my meds more quickly as a result, and sometimes the return to an "on" state begins almost immediately.

Sorry for rambling here. But I do believe that although one-third of Parkinson's patients will eventually experience some form of dementia, two-thirds of us are terrifying ourselves as a result of the natural aging process and a fairly minimal butt-kicking from our PD. Tonight I could not remember for the life of me the name of the street I lived on in Kentucky 3 years ago. My wife AJ, who has also had Parkinson's for the same 16 years that I have, immediately came up with the name of the street and even the darned street number. At other times she can't find a word in her memory and gets her cue by asking me.

The first time I ask her to remind me of something I have forgotten, and I don't know who she is, that's when I'll start to worry seriously about PD dementia. In the meantime, keep doing crossword puzzles and playing Scrabble. I think the mind is very plastic organ - if you've spent time with a stroke victim you know the amazing things the brain does to compensate for and regain what it has lost. Like plastic, however (or maybe Playdough), it tends to harden and lose its flexibility when not used. Good luck, Digger.

Greg

[rose of his heart]

Sorry I don't have more time to elaborate, but here is an excerpt from my neuro-ophthalmologist's letter re: findings during my first exam.

Her reading problems are related primarily to convergence insufficiency, secondary to the Parkinson's. She also incidentally has some rotary nystagmus
and esotropia, all of which are related to her childhood strabismus and not related to the Parkinson's. I have given her printed information about Parkinson's including a copy of the paper by Valerie Biousse in Neurology 2004, Volume 62, page 177 to 180, reviewing the ophthalmologic features of Parkinson's disease. She had none of the other eye findings of square wave jerks, visual field defects, blepharospasm, or apraxia of lid opening. I have given her a prescription for reading glasses which should give her symptomatic relief from the convergence insufficiency.

Well, that was 18 months ago. Now I have the blepharospasm and apraxia too. Joy, joy, joy. Good luck!