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Topic Worst case scenarios and statistics Go to previous topic Go to next topic Go to higher level

By mylove On 2009.10.13 12:52
I wonder sometimes when I read through the posts here about a few things.

I was reading links in some recent posts about the addictive behaviors that can be side effects of some medications, and in each of those studies they state that the percentage of incidence was between 8 and 18% (respectively). That means that, conversely, 82 to 92% of patients DO NOT suffer these side effects. Not to disrespect anyone who is having problems with side effects from drugs like Requip and Mirapex, but we are in that majority and they are working well. I hate to see people frightened away from something that has the potential to work effectively before they have tried it to see if it works for them.

Also, on the risk of dementia:

"A total of 233 PD patients were included, and 140 patients - 60%....had developed dementia by the end of the study period. The cumulative incidence of dementia steadily increases with age and duration of PD and, conditional on survival, increases to 80% to 90% by age 90 years. Women live with PD longer than men and spend more years with dementia. At age 70 years, a man with PD but no dementia has a life expectancy of 8 years, of which 5 years would be expected to be dementia free and 3 years would be expected to be with dementia."

I would submit that by age 90, many people, not just those with PD, will develop dementia. There are also a multitude of studies on this issue. In the later years, PD tends to be just one of a multitude of other catastrophic medical issues that a patient may be facing at a given time. Yes, it is a heightened risk with PD, but as with the side effects, nothing is a given.

My DH is into his second decade with PD, and he is doing very well. I could point you to several others with the same situation. The common factor seems to be that they are YOPD, and therefore, not into age-related issues yet to compound things. Are we pointing to the wrong set of factors?

We hear from a disproportionate amount of people on this board who are dealing with these two issues, more than statistics would surmise. I wonder if thats because those issues are so challenging for a caregiver, thus forcing those people to seek answers and assistance on a board such as this. I see very few posters here that are doing fairly well on the day to day - we do see, however, an abundance of folks who are reaching out for help in the very final stages. I think that may be why the demographic is so skewed. Much of the time this is more of an 'end of life' board - I have noticed that people in the early stages post once or twice but don't stay here long. I'm not sure what to make of that.

I wish there were more. Sometimes I feel that so many people here are dealing with those huge, end-related issues that they feel its inevitable for everyone. Al weighs in on this from time to time - please don't put everyone in the same box. No two people have the same progression or spectrum of symptoms (or lack of them). I agree with Annwood's husband's physicians (and I'm sorry if it offends anyone) - I don't think we need to ring the worst-case-scenario bell every single time. It does frighten people - sometimes unnecessarily. While it's great to think ahead and make sure your legal ducks are in a row (which everyone should do regardless of their medical situation), I think it's stressful for the families to anticipate what may never come, and losing what reserve of hope and enthusiasm for life you have is devastating.

By packerman On 2009.10.13 13:30
this viewpoint is refreshing. i have been wondering the same thing about this forum myself lately. i also lurk a lot and post only a little. i guess we are in the minority. my DH is 52 and in his 15th year after diagnosis. he had DBS 2 years ago and is doing well. i agree that YOPD patients seem to progress more slowly.

maybe we need a YOPD section added?? your thoughts? JSmitch?

By mylove On 2009.10.13 13:45
Thank heavens.. I was hunkering under the desk in my best 'bomb-sheltering' pose after posting this one. :)

I haven't found a whole lot of other good forums on YO out there, and there is so much good here, but it does get overwhelming. Another section would be great.

By lurkingforacure On 2009.10.13 15:14
We are YO as well and I wish I could say we are doing really well too but we aren't, and we are not even four years into this. We seem to have a lot of issues I read about here and they have all popped up so suddenly over the past couple of months. It is so frustrating too, because we do everything we can to be as proactive as possible but still we seem to be faring so much worse than others our age and/or this many years into the disease. But I still think your post needed posting so thank you.

It is a fine line between too much information which hopefully we never need and being prepared. PD is so different for everybody which I think is a huge clue in and of itself to the researchers and scientists.

For those in the YOPD group, there is a forum particularly for young onsetters out there. You can google it if you like. I get more support as a caregiver here, though, than anywhere else, and feel that a lot of that is because of the veterans we have here, who are so sharing and supportive of those coming behind them. If we had additional sections on this forum for raising young children, teenagers with a PD parent, how to handle family holidays/get togethers, how to handle our PD loved ones AND parents with health issues themselves (on both sides of my family, as if the PD weren't enough) etc., I think that'd help some of us cope with issues we face over and above the strict caregiving, and that could be very helpful.

Thanks again for bringing this up.

By Pearly4 On 2009.10.13 15:15
I don't have a problem with anything that has been said but I think it all falls within the "educate yourself" part of the disease and caregiving -- it's a distinct possibility that your caregiving will include dementia for whatever the reason.

I have always tended to believe there is an inclination to look for distinct boundaries on all the complications we've all had to deal with -- are your husband/wife/parents behaviors caused by medication? Possibly. By a tendency that was there previously and has not been "let loose" by a dementia or other behavior disorder? Possibly. By some unknown unproven complication of Parkinson's? Possibly, who knows. More likely (in my own beliefs) -- by some combination of those factors and others as well.

Actually though what I really wanted to say was I've seen other boards become so bogged down by separate boards, etc., that they become useless -- a hodge podge of "where do I go, where should I look". The simplicity of this site has been the mainstay of my limited mental resources during the time of caregiving for my mother --

I'd also assume there is more time and resource needed for maintenance, etc. by our moderator -- I'd hate to reach a "pay as you go" state for use of all this.

By packerman On 2009.10.13 16:00
I also keep coming back here because it has good info that is specific to PD Caregivers.

but, some days, the posts do become a bit overwhelming.

By LOHENGR1N On 2009.10.13 17:04
These are all interesting points mylove thanks for opening up this concern. I myself don't think We need other sub-categories, this is if you will a small "family" type forum. From time to time we have posts that don't belong here. You'll have that on the web, if We run across one just email Jim and He's very good about checking it out and deleting them. I myself am a young onset, at times it seems there are so many condolences I type.......but We're all in this together so I think We should stay All in this together. Especially being young onset we can glean bits of wisdom and ingenuity that may or may not help Us down the line.

As to other issue's anyone who as read my posts here know I have a problem with the big "D". It wasn't discussed that long ago and many were blind sided when it occurred. We can with empathy understand the shock of dementia to them as looking it up they found it well know, documented and published. We can feel their pain and disbelief. I understand them wanting to warn of the signs, warn that it happens and is real. However moderation is needed in this, many times it's just adjusting to med's or a new med prescribed sometimes it's not. It is distressing to read my "Parkie" is forgetting where they put the remote lately is this the onset of dementia? Especially so to young onset Parkies, everyone forgets from time to time. Ever leave the keys in the ignition then hunt for them? Doesn't mean dementia is setting in just means your mind was probably on something else. But We know where and why this happens from time to time here. It's to spare the shock and pain experienced by others. And they are trying to help and we can't or shouldn't deny them this chance to aid others. We should however not be quick to pull the trigger. Yes it is distressing to have a caregiver watching a young onset fearing any little quirk is dementia. Just as it is distressing to think of knowledge being withheld. It's a fine line that needs adjusting from time to time (We can do that here by talking it out and respecting each point of view.).

At times new posters are looking for "the cure" or great answers from us. They run ideas from elsewhere by US. Exercise helped so much, bike riding, hiking etc. then upon more info the aren't on anti-Parkinson's med's, while that's great, we wouldn't put a Parkie who has no balance on a bike. So sometimes they take it as we're not open to newer things or just negative.

I could go on but as it as taken me an hour to type this (was that a good Lord thank you I just heard?) I'm going to stop for now, great postings....lets talk it out, and young onset let's post a bit more, we're all in this together, be nice to each other. Take care, best of luck and hang in there.

By annwood On 2009.10.13 19:19
Once again, thanks Al for putting things in perspective.

I do believe that we see the worst case scenarios here on the forum because they are from the people having the most trouble. I know that it never entered my mind to post until things got very bad with my husband. It is what it is.

I do believe that people should be aware of all possible problems, including dementia. I agree that the incidence goes up with age but also with time from diagnosis. I acknowledge that many cases of confusion and erractic behavior can be the result of PD meds but if an adjustment doesn't help you are dealing with dementia. If it is your loved one the incidence is 100%. I continue to believe that physicians have an ethical and moral obligation to inform patients of possible side effects or problems. People can decide how to handle this but my point is that affairs need to be put in order before it is too late. It is wonderful if you don't ever need to use them.

I am happy for those individuals who do not have any problems with meds or progression of disease. We always stress that no two cases of PD are alike. May yours be kind to you.

By lynn On 2009.10.13 20:33
Knowledge is power. I believe in full disclosure and I'm thankful my husband and I put our ducks in a row before his dementia diagnosis. Also, before you have surgery they disclose outcomes that may have a 1% risk. There should be no different standard for PD.

By shakydog On 2009.10.13 22:42
Hmmm. So many thoughts. So little space.

When I was first dx at 42, I was YO. At 54 I'm not. Do the drugs cause obsessive behavior or is it a trait I've had all my life? Am I getting more comfortable with my life and mylove so I am speaking my mind instead of biting my tongue?

Who knows

each of us is different

each progresses different

each has different side effects

I'm not 84 and ranting because of unknown terrors

I do get lost sometimes in the sudoku or the puter. Is that obsessive?

I have doubts about reality. I always have. But I have always had parkinsons.

Not since dx, but always

the physical traits that led to dx were just the latest round.

Be honest. Are you that different now than 20 or 30 years ago?

I don't feel that I am. I still don't know how to interpret the input that I get. And sometimes feel like lashing out, but I don't. Sorry for those who have that happen. Hope I don't
forgive me if I do. It really isn't personal.



By Reflection On 2009.10.13 23:19
"Dementia" is a sensitive issue. One reason is the word "dementia" is quite general, and can be used to mean different conditions by different people. One cluster of definitions of "dementia" is "absolute" - the inability to perform some activities of daily living. Another cluster of definitions of "dementia" is relative - it is a decline from a previously established level of functioning. So - if the person had been very high functioning, in whatever cognitive domain, and can no longer function at that level, some would say he has "dementia." Then there are the gradations: "mild cognitive impairment", "cognitive impairment" (in one or more domain).
Many people's understanding of "dementia" is based on Alzheimer's, with memory problems being the most significant issue. The cognitive, behavioral, and mood issues of PD are different. There are two main clusters - Lewy Bodies disease, and PDD - Parkinson's Disease Dementia - and infinite variations.
Long before cognitive impairment reaches the level it can be called "dementia" it can severely impact the functioning of the person with PD, and his or her family. Knowing about the non-motor symptoms of PD on mood, behavior, and cognition, and the side effects of PD medications might help families avoid the damage these symptoms can wreak. It is common for those with PD to underestimate the impact of the disease on their functioning. Neurologists could do a lot more to help both patients and their families understand and deal with these issues.

By karolinakitty On 2009.10.14 09:09
All very good points to a "newbie" like me..... this disease hit Jim hard and fast,he's only 52, with signs of dementia. I myself am very analytical and have to research and research to see what's up. Jim chats on other PD sights for patients and is amazed at how depressing some of these patients are. He has a positive outlook on things. He refuses to let anything defeat him. WE have had to adjust many things in the last 9 months to help with his symptoms. Our biggest problem is the short term memory loss/dementia....

When someone has been a chef and an OTR truck driver as he has been in his lifetime, it's hard not to consider the hard effects it has had on him. While he still can drive and do it well, his sense of direction is way off. I have to be with him always or he will get lost. He tried to surprise me by making chocolate chip cookies, for which he used a recipe, and we still laugh at how they came out....

His loss has been dramatic these last 9 months but also has given him more determination.

There are, i know, so many out there who still work 40+ hours a week, who live normal lives to their best abilities. That is awesome, i commend those and maybe even envy them. There are, and maybe just not so many, that this disease has hit hard and fast. Why? Again, i think it runs patient to patient. I read so many posts where people who are having the most troubles seem to be in the over 65 age bracket. Jim is not, he's in his 50's and looks like he's much older...but only recently.
I can show pictures of him just a year ago with fish we caught and show you pictures a month ago that show how much he has gone down.
We just had a friend visit us from Indianapolis whom we haven't seen in 3 years. He actually cried when he hugged Jim. He could not believe how "bad" he looked.
These things happen and we move forward. Maybe more YO patients should be posting and maybe even another category for them....
I agree that it seems most posts are made by those who need answers, even myself. But the doctors don't have them, as i have found out.
Just another thought ... how many of you YO patients have had medical insurance where as you can get constant medical help and medications? This too may have something to do with it.
Jim being uninsurable since his TBI, in my opinion, has not had any regular doc visits. Some of his symptoms showed some 4 years ago but we brushed them off as regression to his TBI or as it is called post concussive syndrome, where they have no "real" treatment. This too could have added to his rapid decline.

By Reflection On 2009.10.14 10:30
I don't want to offend anyone, or depress them. It is very hard to calibrate anything one says about the mood/behavior/cognition aspects of Parkinson's to be informative, yet not scary. And the issues are so complex, murky, and intertwined it is hard to discuss them briefly, without oversimplifying to the point of uselessness.
I'll venture a few more points.
In some cases (including my partner's) the Parkie is still "smart" in many domains (language, for example) while being seriously impaired in others, such as executive funtion and judgement. This is consistent with the research that Parkinson's may affect the frontal lobes. There's a forum for caregivers of those with frontal lobe impairments, and I've linked to its summaries of symptoms, which might be a helpful if you think there may be an issue with executive funtion and judgement: (summary stages 1&2) (summary stages 3&4) (summary stages 4&6) (detail - stage 1) (detail - stage 2)

Mood issues interact with the cognitive, and can be caused by Parkinson's (eg, depression is common) or by medications (manic reactions to dopamine agonists.) I find it damn near impossible to tell which factor is causing mood issues - I just know that my Parkie's moods are dramatically different than they used to be - both on the depressed/apathy/withdrawn scale, and on the manic/aggressive/combative/abusive/compulsive scale, at different times.

Finally, most difficult to write about: how to recognize, discuss, deal with these cognitive/behavioral/mood issues. There's self-censorship, and then there's external pressures not to discuss these issues, with our Parkie's insisting that nothing is wrong. In my experience, this can become "gaslighting" - an insistance by the Parkie that you accept a version of reality that you know isn't true (eg, that they are not impaired), to keep the peace. This can be very difficult for the family - spouse, kids are walking on eggshells, trying to pretend that nothing is wrong to preserve their relation with their Parkie spouse or father, when the Parkie's compulsive behaviors, bad judgement, mood swings are making their family's life hell.

If this doesn't resonate, that's wonderful, and I sincerely hope it never does.

If you are a Parkie reading this, and your reaction is "this sounds just like my spouse/kids/other loved ones - exaggerating everything, making it sound as though everything is my fault, blaming my PD for my porn, infidelity, shopping sprees, gambling, other obsessive behavior, saying that I shouldn't do the finances/drive etc. any more" - maybe, just maybe, this will break a tiny crack through the lack of self-awareness of deficits and the denial. And - I don't know you - maybe it doesn't apply to you.

If you love a Parkie - maybe this could help you put words and concepts to stuff you have vaguely sensed. I felt bullied for years to pretend all was well. It wasn't.

It is a thin line between losing hope & optimism, and enabling the Parkie's most dysfunctional behaviors in the name of preserving their self-esteem and belief they were less impaired than they are.

I wish us all luck in navigating this.

By LOHENGR1N On 2009.10.14 12:36
I posted this before but instead of looking back through posts I reposted for newer caregivers to the forum. I've included a link to the page I cut and pasted this from.

Dementia is a progressive decline in memory and at least one other cognitive area in an alert person. These cognitive areas include attention, orientation, judgment, abstract thinking and personality. Dementia is rare in under 50 years of age and the incidence increases with age; 8% in >65 and 30% in >85 years of age.Dementia results from brain damage. The causes include the following; Alzheimer’s Disease, Stroke, Pick’s disease, Huntington’s, Downs Syndrome, Creutzfeldt-Jacob, AIDS, alcoholism, Parkinson’s disease and other neurodegenerations.

A diagnosis of dementia is based on:
memory loss - both in short and long-term, plus one or more of the following:

aphasia – language problems
apraxia – organizational problems
agnosia – unable to recognize objects or tell their purpose

disturbed executive function – personality and inhibition
Dementia vs Delirium
In order to make a diagnosis of dementia, delirium must be ruled out. However, patients with dementia are at increased risk of delirium and may have both. Delirium is an acute disorder of attention and global cognition (memory a nd perception) and is treatable. The diagnosis is missed in more than 50% of cases. The risk factors for delirium include age, pre-existing brain disease, and medications. There are many causes, the most common are:

D Dementia
E Electrolyte disorders
L Lung, liver, heart, kidney, brain
I Infection
R Rx Drugs
I Injury, Pain, Stress
U Unfamiliar enviroment
M Metobolic

Diagnosis of delirium is based on clinical observation; no diagnostic tests are available. The essestial features of delirium include:

Acute onset (hours/days) and a fluctuating course
Inattention or distraction
Disorganized thinking or a altered level of consciousness

This is from; for further reading on this.
Take care, best of luck and hang in there.

By caregivermary On 2009.10.14 13:08

I sincerely appreciate the time you have taken to share your knowledge and experiences with us. This is what I believe this forum is all about. I have gained a great deal from your posts and hope you will continue with us.

Parkinson's is not a beautiful disease but there are opportunities for the young, middle aged, and old to delay the progression and all the lovely side problems that come along with it. As in anything else take away what applies to you and leave behind what doesn't. If you gain one kernel of value, then it was worth the read.

By susger8 On 2009.10.14 13:23
Reflection, I know what you mean about intelligence remaining unimpaired while other faculties are less than perfect. My dad is pretty confused a lot of the time, but ask him a question about cars or machinery, and he is 100% on the money.


By Reflection On 2009.10.14 13:49
Definitions of "dementia" conflict, and the word "dementia" is so charged it is probably not useful.

The U.S. Department of Health and Human Services's National Guideline Clearinghouse defines dementia [citation below] as follows:

Dementia... is a clinical state characterized by a significant loss of function in multiple cognitive domains that is not due to an impaired level of arousal. Diagnosis of dementia requires either:
1) assessing an individual's current level of cognitive function and documenting a higher level of intellectual function in the past, or
2) documenting a decline in intellectual function by examinations over time.

According to that definition, I have dementia - my college major required a lot of advanced calculus, which I had no trouble with. Now I can't help my kids with their high-school calculus - I've forgotten it entirely.

What is more helpful is to identify what changes in behavior/mood/cognition create problems for the Parkie or his or her family, compensate for the impact if possible, or reduce the damage those deficits might cause.

Thus - a talking GPS might help a Parkie who has lost some spacial abilities to safely drive longer. A strict "no distractions" policy - no radio, turn off the cell phone - might help a Parkie driver to be safer.

Handing over the finances/driving/planning to other family members might reduce the possibility that declining abilities in these areas might cause damage.

If we get hung up on whether certain deficits are appropriately called "dementia" we lose sight of the very real impact that those very real deficits have on functioning.
So - focus on what deficits are - without blame, defensiveness, or fear (easier said than done) - and figure out how to limit their damage.

--- --- ---
[Cite to dementia definition used above]

the National Guideline Clearinghouse™ (NGC), a public resource for evidence-based clinical practice guidelines. NGC is an initiative of the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services. NGC was originally created by AHRQ in partnership with the American Medical Association and the American Association of Health Plans (now America's Health Insurance Plans [AHIP])
ACR Appropriateness Criteria® dementia and movement disorders - Summary of Literature Review - Dementia

By Reflection On 2009.10.14 16:13
I'm new to this posting stuff, so perhaps am overdoing it in trying to articulate my view. My apologies.

Cognition is not "digital" - on/off, you have it or don't. It is analogue, a continuum -ranging from being very good at something, to very bad. And "normal" is different for different people - they start at different points on the range. Some start at being excellent, so a significant decline brings them to average. Depending on the domain, average may be just fine to continue to do that function. In other areas, there's less room for error. And some folks start, in some domains, at average, or even boarderline, and any decline puts them to where they just shouldn't be doing that activity without supervision or assistance.

"Dementia" rarely comes on suddenly (though sometimes it does due to general anesthesia, or DBS.) If what looks like "dementia" suddenly appears, it is, thankfully, usually reversible, due to medications, dehydration, infection, especially urinary tract infections, etc.

But cognitive impairment does come on gradually, and can be significant in some areas, while other areas are quite good.

So it's not that someone "has dementia" and can not be trusted with anything, or doesn't "have dementia" and can do anything as if there's no impairment. It's often a matter of gradual adjustments to gradual declines - with a time lag for the Parkie, and his family, to realize that the decline has occurred, and can no longer be ignored.

Now - map this concept to a 15 minute appointment with your neurologist, every few months. Is the neurologist going to be able to accurately determine what the Parkie can safely do, and what they can't? Even if they could so determine - would they have the time or inclination to communicate this to the Parkie and his family - often incurring denial and anger from the Parkie? This is assuming the neurologist meets with the family, and the family is willing to tell the truth about the Parkie's condition -the Parkie may punish family members for describing issues to the medical team. There are many studies showing that there tends to be a significant gap between a Parkie's self-report of problems, and the views of his family/caregivers.

So - what to do? Hell, wish I knew.

By LOHENGR1N On 2009.10.14 16:28
I understand it is more important to try to help the Parkinson's patient and family or as stated "What is more helpful is to identify what changes in behavior/mood/cognition create problems for the Parkie or his or her family, compensate for the impact if possible, or reduce the damage those deficits might cause."

In a perfect world this statement also would be alright "If we get hung up on whether certain deficits are appropriately called "dementia" we lose sight of the very real impact that those very real deficits have on functioning.
So - focus on what deficits are - without blame, defensiveness, or fear (easier said than done) - and figure out how to limit their damage."

However We don't live in a perfect world, I say it is VERY important to get "hung up" on the whether defects are appropriately called dementia! We do not lose sight of the very real impact that those very real deficits have on functioning. But We must make sure the right "label" is attached. I'm not splitting hairs here. I and others are living alone for the most part with Parkinson's Disease, (I have help that comes in a few hours a day) if I were to experience delirium from a drug reaction and was misdiagnosed as dementia I could be in real trouble! As both are basically the Doctors call as to diagnosis. Ever try getting a doctor to admit they were wrong? Once dementia is noted in medical records, well the creditability of the patient is nil. Why? Because they're demented. (along with the stigma attached to that diagnosis). I would lose my independence and could easily find myself institutionalized. All I'm getting at is We all are very different in effects and situations here, what might seem trivial to some is important to others. In this being so we have to look at other sides of problems before dismissing them as not being important or down playing them.
So if you look at it from the view of a patient residing alone perhaps you can see where the differentiating is important? Take care, best of luck and hang in there.

By Gidbud On 2009.10.14 22:06
I have to agree with lynn, knowledge is power. Knowing what lies ahead makes me appreciate what I have now. My wife is 49, diagnosed at 46, and does fairly well considering the impact of her Parkinson's. We learned at her last visit that she has progressed to Stage 2. Had I not had this site, I would not have known what Stage 2 really meant. It is not pleasant to read about Stages 3-5. Knowing about these stages helps me prepare.

In my opinion, this forum is extremely helpful. I has those who are about to go through it, those who are going through it, and those who have already been through it. You know what they say about it taking a village to raise a child.

Thanks for all of you who post. You guys rock!

By annwood On 2009.10.14 23:16
Thank you for posting Gidbud. We haven't heard from you in a awhile. Sometimes I feel like the Grim Reaper here and I really don't mean to be that way. As I have said, my poor husband never caught a break with this disease - a failed DBS and severe dementia were the most prominent. Thankfully this will not be the case for many of you but you do need to understand that this is a progressive disease.

I was very angry, perhaps it was displaced anger, at his physicians who refused to address many of the issues as the appeared. When I would ask about things such as loss of smell, erratic behavior, driving, sexual addiction, etc. they would act as if they had never heard of these things. I learned just about everything from this forum and Google. Everyone is different but I am a person who can handle about anything if I know what to expect.

By Reflection On 2009.10.15 10:20
Lohengrin/Al makes a compelling point that a diagnosis of “dementia” could have profound negative impact on a Parkie. And his posts certainly show that he is smart, articulate, thoughtful – not demented” under any definition of the word, but yet he fears what a false diagnosis of “dementia” because of transient factors such as overmedication, etc. might mean for him. I don’t like this “dementia” word, and we need to come up with a more useful concept. “Deficits” is better, at least at the stage my Parkie is in, but I’d love suggestions.
And Lohengrin’s post highlights how important it is for our Parkie’s to have clear health information readily at hand, to avoid the kind of incorrect diagnosis he describes. I like clipping a note to the health insurance card in the Parkie’s wallet – you know the doctor/hospital will find that insurance card!
The card can list the neurologist and her contact info, person with Health Care Proxy & contact info, medications taken, co-existing conditions (eg, diabetes – low blood sugar could cause confusion), brief instructions (eg, avoid general anesthesia unless needed to save my life.) That increases the likelihood that the Parkie will not be incorrectly diagnosed, miss needed medications, or have his wishes overrun by medical personnel.

By karolinakitty On 2009.10.15 13:59
Reflection ... i received a card from the parkinsons foundation that lists all the things you are talking about in regards to having stuff ready on your wallet. It's great to have.... also i agree with Al and the rest in regards to the dementia diagnosis. Jim is very intelligent and can carry on a deep philosophical or intellectual conversation with the best. He's a little slow at grabbing the words but he knows what he knows. He can't remember 5 minutes from taking his pill whether he took it or not, or if i introduced you to him he would forget your name,or not remember how to get from here to there but he cna tell stories from he was On the road or stories about the kids at the unniversity where he was Executive chef.
He forgets to close fridge doors but can tear apart a Penn conventional fishing reel and put it back together practically with eyes closed. He is not incompetent but has issues with daily life. He was a writer of great poetry and short stories. He's almost afraid to do those now just in case he makes no sense. I say do it anyway. If it doesn't make sense i can always help out and clue you in....
It seems dementia is always associated with old age but parts can be explained with disease and injury. As soon as they approve my membership that FTD website seems interesting for anyone who has possibly had a TBI or a history of frontal lobe problems in the family....... and I do believe their is never enough knowledge we can seek out as caregivers.... best to take what we can store it and maybe or maybe not use it later....
All the caregivers and patients on this site who post, answer questions, let us in on their lives, really makes it easier to sort out the large amount of info out there.... Thank you all for all you posts and advice.....

By Gidbud On 2009.10.15 16:05
Just a quick word about the side effects of dopamine agonists (Requip and Mirapex). I realize that between 8 and 18% experience the side effects, but the lives of those who experience them are 100% affected. Because of this forum, I knew to look out for the danger signals, and I am sure glad I did! If I had not been keenly aware of the danger signals, I would have missed the fact that she is not able to tolerate the dopamine agonists. We tried both medications with equally bad experiences. I will not go into details, but whoa, what a ride! I like what a fellow caregiver described her experience with her YOPD husband as their Mirapex year. We are fortunate enough to have a wonderful friend that had the energy to intervene and help us out after I was very exhausted and was going into self-preservation mode.

My wife said she felt “invincible” while taking the dopamine agonists. That means that the patient is very persistent and will go to great lengths to stay “under the radar”. She is now on 25/100 levodopa/carbidopa. with none of the undesirable side effects. The dosing schedule really sucks, but her symptoms actually seem more diminished. At only 48 years of age, I wish she did not have to start levodopa/carbidopa treatment this early, but there is absolutely, positively NO WAY any more Requip or Mirapex is going down her throat! LOL

By Mary On 2009.10.16 11:41
I love this forum just as it is. In the beginning when Dad's problems weren't so bad, I just thought, he may never get as bad as others. But, I wanted the information, I wanted to be prepared and educated on this disease. Well, Dad did get progressively worse in a year's time. I was prepared and it helped. I worry that those with Parkinson's Disease that bless us with their insight on this forum get upset when us caregivers vent. Just my two cents worth, Mary

By annwood On 2009.10.16 12:23
Mary, thank you for the kind words. As for me, I never get upset when caregivers vent because that is what this forum is all about. If you can't "lay it all out" here, where can you? I recognize that not everyone wants full disclosure but I tend to believe that most do. I tend to subscribe to the philosophy of "Don't ask a question if you don't want to know the answer". If some of us who have walked this road can smooth it out a little for others that is a good thing.

By mylove On 2009.10.22 18:02
I agree we need a place for difficult info and a place to vent. Wasn't really saying that we needed to 'sugarcoat' or anything... just more an observation that most everybody here seems to be in the end phase where everything is catastrophic. Sometimes it makes it hard to pick out information we are looking for on the smaller challenges we may be experiencing in other phases. Maybe I said it in my meandering way and it was somewhat misunderstood.

The only other observation I wanted to make was that it would be easier if we could keep the 'vent' posts and the 'asking for info' posts somewhat separate, so people didn't get combat fatigue from trying to surf through to the answers they may be looking for. The good info can get buried in other stuff, like we experienced with the political arguments that cropped up a couple months ago.

Keep the good info coming, tho! We can all use it, even if all we do is file it for later reference.

By Pick On 2009.10.26 15:45
I think the point is that what may not be "good info" for you may be very good info for somebody else. Reading "vents" may give you combat fatigue but for me (and I think others) they are extremely helpful. The first time I read posts on this forum way back when I literally had tears rolling down my cheeks. It was the first time I realized I wasn't crazy or horrible. I had no idea there were others like me out there and for the first time I felt a little less alone. In group therapy these phenomena are referred to as "Catharsis" (venting) and "Universality" and are considered to have as much therapeutic benefit as imparting information.

By WitsEnd On 2009.10.26 16:23
I can't speak for everybody, but grief is a process. It involves anger and depression before reaching acceptance and closure. Grief with Parkinson's starts a little at the first diagnosis. It occurs throughout the course of the disease and is especially bad near the end of the disease and shortly afterwards.

Different posters may be at different stages...ranging from a feeling of helplessness to desperation to fear to anger. I spent time with tears running down my face on this forum. It was the first time I realized my dad hadn't really grown so mean or felt so badly toward me when I was doing everything I could--it was the disease. The education and the reading of other people "venting" was so healing for me...not to mention being able to write about what I was going through and people actually UNDERSTANDING.

That being said, reading what happens in the later stages can be terrifying and depressing and everybody has to take in what they can take in emotionally at any given point. Denial is also a part of grief.

I have to agree with Annwood. If somebody asks a question, they will likely get an just might not be something that they really want to hear. It's only fair though to lay it out straight because if you don't--then you really aren't helping. I wish I could read a happy ending for everybody out here. The truth is...until there is a cure...those happy endings are far and few in between.

By Reflection On 2009.10.27 11:47
I recognize that some posters would like me to tone it down on addressing the cognitive, mood & behavioral aspects of PD. I respect your feelings, but I strongly believe that those with Parkinson's and their families can suffer a great deal of unnecessary damage because these aspects of Parkinson's tend to be recognized and treated late, if at all. That has sure been our experience, but to depersonalize this, I tend to cite authorities, so here is another I found helpful.

There are a series of webinars at the PD Podcast Education Center:

Several may be of interest, including one that addresses "neuroprotection" and several on early PD.

I have just watched the webinar on "Cognitive and Behavioral Changes in PD: Update 2009" ( - click "Webinar" then, "cancel")

The "Conclusions" of that webinar:

"- Cognitive and behavioral abnormalities are common in PD and may be more problematic than motor symptoms. They are probably more common than we think. They are probably under recognized and under treated. In some cases, they may actually cause more difficulty, more challenges to the patient and the family than motor symptoms.

- Recognition has historically been poor but is improving

- Treatment is available for many problems, but symptoms need to be identified first!!!"
The webinar also covers ways of addressing these issues.

There are different kinds of hope. One kind is that the problems won't happen. Another is that if problems do happen, they can be sucessfully addressed. That is where the podcast's conclusion "Treatment is available for may problems, but symptoms need to be identified first!!!" comes in.
Most of the damage my family has suffered was unnecessary.
- I wish we had known that what was happening was actually common, even "normal" in PD. My LovedOneWithPD became extremely secretive, trying to hide these symptoms, and controlling, demanding that his family pretend that they did not see those symptoms either.
- I wish we had known that some of it was not inevitable, but was the result of medications (dopamine agonists or overuse of levodopa--> compulsions, sleep attacks, manic and aggressive behavior).
- I wish the neurologist had insisted on meeting with us, and talking privately: my LovedOneWithPD refused to even tell us when his neurologist appointments were, because he didn't want his neurologist to know the truth about what I now know were typical PD behaviors caused by overuse of dopamine agonists and levodopa. Being secretive, covering up, and denial, are common - and understandable - reactions, but they can make the problems much worse because the problems are not addressed until they have done enormous damage.
- I wish his neurologist helped us, and our LovedOneWithPD understand the impact that cognitive impairments, long before they reach the level of "dementia", can have on functioning, and that the neurologist (or a nurse, or social worker, or anybody) had supported us in adjusting how our LovedOneWithPD and the rest of the fmaily lived to compensate for these issues.

So much of what we have gone through was not necessary - with better knowledge. I do not want anyone to go through what I have. I do not want any LovedOneWithPD to end up without the support of his family, because he is convinced there is nothing wrong with him, proceeds to wreak havoc, and never takes responsibility for his actions, because lack of insight and empathy is also a symptom of PD. I don't mean to scare or offend anyone, but my family has been there, and done that, and it has been horribly destructive. His kids have pretty much written him off. I'm hanging in there, by my toenails, but he is planning to move out so I don't "control" him, because he believes there is nothing wrong with him, other than movement problems, and because if he has an inkling that he may have other problems, he just doesn't care what effect he might have on anyone else - the narcissism, selfishness that I have seen described so often here. So he'll make even more of a mess of his life, and either I'll at last wash my hands of him, or I'll pick up the pieces once again - and neither of those options is good for him, or me, or the kids. But it's where we are - and it's so *#^%!!@)%(# unnecessary.

So: two kinds of hope.
I devoutly hope that cognitive, mood & behavioral aspects hof PD do not happen to your loved one, or family.
If they do happen, I hope you recognize them, realize that they may be treatable, or that they can be managed if recognized and addressed by you, your loved one, and the medical team.

By annwood On 2009.10.27 13:04
Thank you.

By lurkingforacure On 2009.10.27 13:04
As usual I have lots to say but fortunately don't have much time so here's my comments before I forget them!

1. Karolinakitty: we are young onset and have health insurance. Some might even say it's "great" insurance, but I have found most health insurance is the same unless you work for the federal government and then you get the creme de la creme coverage.

So having insurance, I can't say it's made a damn bit of difference in anything. Sure, we get to pay less than our neuro charges "uninsured folk", and have coverage for drugs, but that's it (and let's just say that "coverage" does not mean "paid for"-if you have to take a name brand, we pretty much pay full price, thanks so much.). I can't say we get any better care or treatment because we have insurance or husband has progressed despite EVERYTHING we have done and we have been incredibly proactive. He takes coQ10, uses the nicotine patch every day, takes a bunch of antioxidants and vitamins, yet he feels like he is at the stage someone with PD for 10 years is, and he has had it not even four. He even exercises as he is able.

I feel you get whatever care your doc's style is. We see a couple of neuros, hedging our bets, one is very curt, dry, and cold (yet he is the one who really went to bat for my husband when the insurance company denied our mirapex renewal), the other is warm, interested, and caring. Both, however, are NOT up to date on what is being done in the field, and the warm doc should, he is a PD specialist AND HIS WIFE HAS PD! At our last visit I actually asked about clinical trials and he was unable to tell me what trials are going on for PD! I could hardly believe it.

So no, I dont' think having health insurance makes any difference with this disease, unless you include not having to pay full price for doc visits (but most docs are now discounting if you pay cash almost as much as the negotiated insurance rate, so the health insurance benefit there is starting to wane...)

2. I'm one of those that needs to know the worst case scenario, so that I am prepared. I have two very young kids and we have school to get through and then G__- willing college, and I am not a spring chicken as we waited to start a family so that we would be more financially secure (ha, PD nixed that) and we would enjoy them more (again, PD not helping there either). I understand not everyone feels that way, and hopefully they will be spared those things, but realistically the stats are not in our favor and so as they say: chance favors the prepared. It's also easier to handle things this way, I feel, so you don't get broadsided and are left in shock over yet another PD surprise.

My only real concern right now is my husband has refused to tell our kids and I think that has been and continues to be a huge mistake. It puts an impossible burden on my to "cover" for him when he is tired, not feeling well, the meds aren't working (which is most of the time, it seems), and I find that to be as exhausting as running a household (and everyone here knows what all that entails when our loved one has PD, they cannot help at all, even to take out the trash or do a load of laundry), overseeing homework and teacher conferences, soccer games, dance recitals and practices, etc., etc., etc. I don't know how much longer he can "hide" this from the kids but I have to say he is a master and even his own mother, who lives less than five miles away and we see often, has no clue (which ticks me off, actually, because she SHOULD notice her son is not doing well).

We have talked about this and he just says he does not know how to tell our kids that he is going to die. I think there are better ways to explain it but that is how he sees it. Our daughter worships the ground he walks on and I think he is terrified that she won't love him the same or as much, plus it puts the burden on her as well. So I am letting him do as he wishes, but fear that when they do find out/we tell them, it will be much harder and worse than if we'd just told them at the get-go.

So thanks, everyone, for telling us like it really is. Lord knows the neuros don't, and I for one want and need to know so I can be as prepared as I can be.

By Reflection On 2009.10.27 13:53
lurkingforacure - I also, for six years, honored my LoveOneWithPD's desire not to tell the kids. For the first couple of years, this was OK - they were young, and his symptoms not that noticable. But we waited way too long. I thought it was his perogative to decide when and how to tell the kids, until eventually the weirdness and burden of everyone knowing that something was terribly wrong, but that no one could talk about, became overwhelming. I finally told him after one particularly egregious incident that if he didn't tell the kids, I would - and he at last told them.
It would have been much better on all of us, including him, if we had told the kids earlier. Also - kids may figure it out on their own, either from his symptoms, or from googling the name of one of his medications, and it is much better for their relation with their father and with you to hear it from you - it shows you respect them.
Consider how and when you tell the kids. Make sure you are there - so you show "we're all in this together" - and you know what he has and has not said.
One good time might be dinner, on Friday, so the kids have the weekend to absorb the information, and google - which they will. It would probably be helpful to have some up-to-date books or info from the PD foundation about Parkinsons to give the kids - better than them googling - and you can try to have materials that are relevant to the stage your husband is at - no need to scare them with later developments. Having materials also helps prevent the situation where you are the "bad guy" for telling the kids stuff he decides he does not want them to know. He may tend to want to spin it as "I have PD but it doesn't make a difference" - what you need is to communicate to the kids that PD has real effects, but that the family can deal with them - because, with knowledge and support, you can.
For my family, the "knowing but not acknowledged" phase was very similar to living with someone with an addiction, where everyone is trying to placate the addicted person, pretend nothing is wrong, keep anything from being wrong - you describe how you've had to pick up the slack. Actually, it was like that even after he told the kids, but less so. Materials aimed at the kids of alcoholics might be helpful - try "Facing Shame-Families in Recovery" by Fossum and Mason.
It is hard to be compassionate to someone who just seems to be acting irresponsibly, or uncaringly - which, sadly, describes some with PD. It is far easier to be understanding if you know they are ill - Dad didn't do X not because he doesn't love me, but because his illness made it difficult. It is impossible to have an authentic relation with someone who is hiding a huge part of their life. If you can manage some kind of ongoing conversation, not just one bombshell, so much the better - since the effects of the disease will evolve.
We didn't do family therapy - my LovedOneWithPD flatly refused. It might have helped to have an ongoing safe forum - maybe weekly at first, then once a month or even quarterly - to talk about what is happening, what is changing.
Good luck.

By mylove On 2009.10.27 14:02

That is really hard on you, and unfortunate, that your husband feels like he cannot tell the rest of his family, including (and particularly) the kids. Your kids are young, but there are ways to phrase things that can at least help inform them that while they can see that things are not 'normal' (at least in comparison to other adults that they know), neither does that mean that things are necessarily catastrophic (God willing) at the moment. He fears telling them that he is going to die, but realistically, EVERYONE will die, and everyone will know someone that they love who dies, whether it is in the first, second, third or whatever decade of life they find themselves in.

Absolutely it is hard! But it has to be harder on kids to not know what is really going on but know that SOMETHING is amiss... and that it is some great and secret mystery that they can't be told about but must only wonder! I believe that is harder on children than the actual truth, which they can come to some kinds of grips with. *What* to tell them depends a lot on their age and maturity levels. Your kids are still pretty young, isn't that right? They can probably understand that Daddy has an illness, that they can't catch it from hugging or kissing him (you may be surprised what children wonder!), and that it means that he has to take medicine for it and it makes him feel very tired or cranky sometimes.

It is so much easier to know the parameters than to fear the unknown (what so many of you have said in other contexts)! Why should it be different for children? They glean FAR more than we know from what they observe day to day... despite how well we think we're covering up. Ask the children of an alcoholic how much they knew about a parent's so-called 'hidden' addiction. (this is just an analogy, mind you)

As far as other people go, they will find out eventually, and that will be a bridge he will (or more likely, YOU will) have to cross at that time. Will these people who are supposedly close to him be upset that he did not tell them before? Perhaps. Is it their fault for not noticing? Maybe that too. There are a lot of factors there.

It's a different situation with your kids. A family is a unit, and cannot be united in fighting a battle unless they all know the score. My kids are teenagers, so it's different for us, but I will say that in a way, understanding that a parent can be ill too can have a profound effect to the positive for a child as well. I have watched my very self-involved child find parts of her heart that I did not know existed, without any effort of my own, and for a man who came late into her life as a stepfather. I have no doubts that somewhere down the road, as things progress, if we need them they will be there.

It's a serious breach of trust for a child to find out that important family information has been withheld from them (and I'm not talking about Santa or the Easter bunny). His fears are not unfounded - the process will not be easy. But what about this journey is? I believe, as I always have and always will, that real love remains unchanged by the illness of our loved ones. I don't believe for a moment that your daughter will love him any less. This is his chance to show her very eloquently that Daddies can be brave.

On the other subject, I could go on and on about uninformed (and uncaring) neuros, but that's the topic for another post (and probably one best tackled by shakydog).

By mylove On 2009.10.27 14:04
Wow, we posted nearly the same letter at the same time! Umm.... ditto what reflection said. ;)

By karolinakitty On 2009.10.27 15:11
Lurking ... maybe it is just the docs care or attitude or even the knowledge he has on PD..... It was just a thought since he has not seen a doc regularly over the years..

I'm sorry you have to hide this from the kids.... that must be a weight on your shoulders, and i for one wouldn't want that burden. Knowing how fast the decline in Jim has been we couldn't have kept it from anyone close to us, let alone the kids in the house.
Not that i don't know a similiar notion. I kept a lot of things from my kids and friends because of their father, my first husband. Another story another site.

I like the others believe now that you shouldn't hide it for too much longer. Children adapt well and with the knowledge you can gather from PD associations it would help. If i'm not mistaken, APDA has an pamphlet on just that subject. I just received my 2010 calendar and will check it out later and see if it does. I'll let ya know. I sent for many booklets from them and found them all very helpful.

By annwood On 2009.10.27 15:51
I agree that the children should know what is going on. Kids are very perceptive and I am sure they know someting is going on. Better to tell them and include them in the experience. Your husband could talk to a social worker, therpaist, minister or someone if he has concerns about how to tell them. The school counselor also needs to know - she may have ideas on how to do this.

By Reflection On 2009.10.27 16:22
mylove - thanks!

lurking - when you "tell the kids", think through how you want them to respond to questions from outsiders. My kids found it hard to answer the increasingly probing questions "what's going on with your Dad?" Possibilities:
"you should ask him"
"I don't talk about anyone behind their back"
"that's private"
"he's fine."
What's important is that you, and your husband, and your kids agree on how to handle this stituation, before it arises.

While I believe not telling the kids is a mistake, not telling the world may not be: Michael Kinsley describes how he did not disclose his PD fo reight years in this article:
There can be discrimination against those with PD, and I supported my husband's decision not to tell people - though by the time he finally did tell, most knew because of his increasingly obvious symptoms.

But - and this is for you, Lurkingforcure, that left me isolated from my own friends, and you are probably in that same place, if your husband is not willing to tell his kids or his mother. I ended up telling one dear friend who lives 3000 miles away, and eventually some friends in a city 5 hours away whose circles were unlikely to intersect with anyone who knew my husband. It was hard, and added to my burden, and depression - though like you, I was so busy holding things together for the kids I didn't have a lot of time for socializing. But consider where you can get support, and friendship, and a reality check without violating your husband's privacy - this forum is a start. It takes a lot of mental energy to present a false front, and having a refuge is important for your mental health, and your mental health is important for not just you, but your husband and kids.

By WitsEnd On 2009.10.27 16:10
You need to decide based on what is best for everybody. Parkinsons is a roller coaster and can have some fairly quick declines. When mental status's often noticed too late to go back and have that talk and sharing you wish you had with someone before when the mind was sound.

Don't risk it. The truth is we are all dying. You ever see anybody leave this world alive? Yes, PD is a chronic and progressive disease....that's why ever single good day needs to be cherished....whether you know how fast your clock is winding down or not. Some people live for 10 years with mild symptoms--you really don't know how a single individual will do or what the future holds.

Ask yourself if you were in your kid's place--how would you feel? How does it make you feel now? You all have a stake in this. You shouldn't let him make decisions unilaterally you wouldn't otherwise let him make if he didn't have PD.

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