For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in


Topic Cognitive Impairment and Dementia from PD and effect on caregiver Go to previous topic Go to next topic Go to higher level

By loola On 2011.04.05 21:02
Hi,

I just read the thread about the possible effects of meds on the mind and behavior. It was mainly mentioned that obsessions and addictions may develop. What about the lack of executive functioning, dopiness, lack of focus, inability to finish anything or pay attention, memory loss?
I have been observing this in my partner increasingly. It came to a point that nothing like important paperwork gets done if I don't sit with him. Even if he's in front of the computer and I ask him to complete a form and send it when done...the minute I leave believing I can rely on his cooperation and go about my business, he quits and does something completely unimportant like putting up something on the wall. Is that dementia or just lack of focus due to dopamine imbalance? There are moments where I can discuss with him that something seems to be getting worse and he agrees and then he forgets about it and thinks he can start and run a successful business. Is that denial or does he really have impaired judgment? Has anyone experienced those kind of things and how fast does it progress? Also, dealing and talking with him has become extremely draining because it's like talking to a wall or trying to fill some water inside a cup that is already entirely full and has no capacity to take anything in. It's aggravating but I guess that doesn't help anyone. Sometimes he freezes when I talk about making plans for the future. Then he just stares and doesn't respond. As soon as I talk to him about non sense as if to a 3 year old, he eases up and seems normal....that's not normal...I appreciate any insights on this.

thank you.

loola

By mrsmop On 2011.04.05 23:23
Hi Loola....Your partner sounds like a clone of my spouse. He's had PD for about 11 yrs and there has been a slow but steady loss of executive function. It seems to go along with progressive PD. It is very difficult to see this decline in a once very bright and intelligent person. It makes me frustrated to the point where I have not been able to handle it well. It has greatly affected our relationship as I feel like I am living with a "man-child". He does not seem to be aware of his decline, and does not want anyone to tell him how to do things or what to do. Wish I could be more helpful.

mrsmop

By loola On 2011.04.06 00:05
Hello mrsmop,

thank you for the reply. The mental decline has been more pronounced lately and since he is/was also very intelligent, I felt like he was playing dumb or being selfish and placing all responsibility on me to have a nice and easy life...so I had to catch myself raising my voice at him and realize that he is not doing it on purpose. I feel so drained after every talk with him. He is like a black hole that only takes and needs without giving anything back. "manchild" is a good one. He doesn't get how draining it is to talk to a wall and not being able to rely on anything that's "promised." He doesn't see my pain and somehow his cognitive impairment shields him from feeling any deep emotions anymore. I read somewhere that it gets harder on the spouse or caregiver and easier on the patient because they are mentally checking out and don't have to deal with anything important anymore because they can't. It drives me nuts when he seems like he used to be for half an hour and then does or says something completely crazy that makes anyone question his sanity and at the same time he thinks he's on top of the world. I mentioned to him what I see is going on. At first it seems like he hears and feels me and from the way he goes about his business two minutes later, proves it went right passed him.

By LOHENGR1N On 2011.04.06 00:21
loola, These are things that should be discussed with his doctor (neurologist). Voice your concerns, list problems and his doctor can address what avenues to explore and exams to do to gage what is going on. You questions and concerns are normal. This is a frightening disease and at times caregivers fearing the worst can be their worse enemy. You said it's like taking to a wall he doesn't respond or you talk about things getting worse and he agrees then forgets about it. Is that denial or does he really have impaired judgment?

First (and this sounds really stupid but please bare with me) you have to take a breath and remember He has Parkinson's. We've posted here on the forum that PD isn't just slowness of movement and tremors or shaking. It effects everything we do which includes our thought process eventually. He might not respond as quickly as he once used to it may take him time to get the thought formed and out, try giving him a few minutes to answer. If you wait for a minute or two then change the subject the former thought will be replaced by trying to answer the most current question or join the current topic (trying to keep up with the conversation). If he really does have impaired judgement or dementia then he's not going to follow the flow of conversing and you really can't expect him to. He freezes up stares and doesn't respond. Facial masking is another tricky symptom of PD for caregivers to learn to deal with. The stoic, blank look or unemotional stare! PD freezes or facial muscles so we can't express emotions as we once did, it doesn't mean we aren't having those emotions or trying to express them it just means we can't. In our daily life we've learned to read body and facial language and do it subconsciously and automatically. As Michael J. Fox has said my body lies! How many loving caregivers have turned away, tears sliding down their cheeks, shoulders slumped, heart broken thinking their loved one is lost or else just doesn't care or love them because Parkinson's has robbed us of the ability to show this love and compassion as we used to so readily before? All of these things you posted about are things everyone here has heard about and struggle to one degree or another everyday. loola, We all understand, feel and care for you and yours like family here. Please don't think I'm brushing this off or trying to trivialize these problems, I'm not I know what a burden they are. I've just brought up these things because it is good to remind ourselves of them from time to time as we can lose sight and tend to forget them in our daily battles with Parkinson's Disease. I hope no one takes offence from these reminders as we have new members joining here it seems everyday.

As I said at the start of my post I'd write down my concerns and talk them over with his doctor and go from there. In the meantime be as easy on yourself as you can, cut yourselves some slack. Remember we can't make things like they were before, we can be proactive with the doctors and try to make our lives a bit less bizarre.

I like the American Parkinson's Disease Associations slogan "To easy the burden and find a cure". The foundation and slogan have been around since 1961, now 50 years later we don't yet have a cure but we sure as heck can keep easing each others burden. Take care, best of luck and hang in there.

By loola On 2011.04.06 01:02
Lohengrin,

Those are very good points. Thank you. The facial masking is hard to deal with. He follows conversations at times and then he sometimes loses track and I find myself asking over and over: "Hellooo, hello, are you there...?" He probably feels all kinds of things inside but he also has difficulty focusing, planning, remembering and is turning infantile. I suspect that he is getting demented and your advice to talk with his doctors is great BUT my dilemma is as follows: He was chosen to participate in the ceregene study. His doctors didn't recognize his mental decline especially since they did all the mental exams months ago. The dementia has been kicking in rapidly over the last couple of months. One of the exlusion criteria for the study is dementia. It makes sense. He doesn't follow any instructions given by his doc. He was supposed to keep a simple three day diary of his on and off states and wasn't able to do it without me helping and reminding him constantly. If I told his doctors, they would probably not do the procedure on him which he looks forward to and hopes for. What can I do? Keep quiet and just let them find out later when they observe him over the next 2 years? It's tricky. If he needs to keep a diary or fill out forms, he won't be able to. It's getting more apparent each day. I can't be doing his homework for him and cover up for him either. He is scheduled for the surgery next week...

By LOHENGR1N On 2011.04.06 01:12
Now I'm really concerned, how can he have the surgery and expect to benefit from it if his present condition disqualifies him from the study? Where are the medical ethics that are supposed to be involved in the study? It's not a case of removing a splinter from a finger, this is brain surgery. Where is the screening process? Isn't it on going?

By loola On 2011.04.06 01:45
The problem is that his mental state is not apparent when one sees him for a brief amount of time. His doctors focused on motor function, arm swing, freezing, dyskenisia, not thinking. He had to fill out forms stating that he has no cognitive impairment. As he doesn't seem to see it himself, it didn't seem like a lie, but privately he told me that he knows that there is something mentally wrong with him. He sees the downhill journey, but still hopes that the surgery will halt the progression or even cure him.
I went with him a couple of times and they were in and out, filled out their forms and told him to go for an MRI. His mental state fluctuates, it maybe the Lewy body kind but not recognized or misdiagnosed. I found out that one of the people who died after the ceregene surgery due to unrelated cause didn't have PD. She was misdiagnosed and chosen for a study for PD. Can you believe that? It's not surprising that they don't see dementia developing either. I indirectly asked the chief of the study whether this surgery would also benefit people with cognitive impairment. He said it's better to have improved motor functions and dementia than bad motor functions with dementia...he asked why I was asking, but I couldn't tell him about my observations because I didn't want to cause my friend to lose his opportunity. It's a mess. No idea what to do or whether it's even my place to do anything.

By Michele On 2011.04.06 09:04
Wow. You are in a bind. My reaction is that you are enabling him by filling out the forms and journals. If he cannot do this, then it is a big red flag to the surgeons that he does have cognitive problems. Of course, it's easy for me to say this and not be the one to tell your husband that I won't do the paperwork for him. You say he does realize that he has mental problems so he knows this but wants the surgery anyway? Maybe you can gently approach it from that aspect, i.e., the mental problems could be dementia and the danger it would pose for him, possibly death, if he has the surgery. My husband's doctors at a well respected Movement Disorders Center of Excellence just gave him the Mini Mental Status Exam which he always passed even though he had mental problems - particularly loss of executive functioning. The inability to fill out forms and journals would get their attention. In the meantime, you say his surgery is scheduled for next week?! Time to be honest with his doctors and tell them that you hve been filling out the forms.

By coacht On 2011.04.06 09:22
Hi everyone,
I am new to this forum. A friend pointed it out to me since it fit with exactly what we had been having happen in our lives. This thread was an echo of what we have been talking about for the last year and a half. My DW is now a woman-child. Great description, thanks. We went round and round last night and she just doesn't get it. I just am glad to know it is something that happens and not my imagination.
Thanks again,
Coach T

By susger8 On 2011.04.06 09:32
Loola, most likely having cognitive problems would not cause any danger to him for the ceregene study. The sponsors just need to have their papers filled out. Sometimes it's OK for a caregiver to fill in diaries and what not -- you could check the wording on the consent form.

(I work for a drug company and work on clinical trials.)

Sue

By loola On 2011.04.06 10:04
Hi Michele, you are right, it is quite a bind. I realized that I shouldn't help him with his forms if it paints a different picture in reference to his mental status and qualifications for the surgery. I fear though, that if I tell his doctors about this, that they may drop him from the trial and then I would blame myself with 'what if' he was better had he received the surgery...

Sue, I also don't think that the cognitive impairment could cause him danger from the study but on the other hand, it is a study done to find a cure for PD and only conducted on few people at this time. How can he be an accurate representative of the study when he is at times unable to fill out forms, keep a diary and make appropriate reports to his doctors? His doctors encouraged me actually to help with the answers on the forms which surprised me. I also think that the mini mental evaluation test doesn't reflect the mental status sufficiently, especially since there are major fluctuations throughout the day or from one week to another.
As the ceregene doctor said, it's still better to have improved motor functions and cognitive impairment than bad motor functions and cognitive impairment together. I am really concerned and at a loss for what to do. I appreciate all of your input which helps me see things more clearly and evaluate the options. Thank you.

By Reflection On 2011.04.06 10:15
Loola – as mrsmop said, what you describe sounds very much like my husband as well.
I found it helpful to lower my expectations until he could meet them – which early on meant not expecting him to deal with “mission critical” stuff because it was easier to deal with it myself than constantly check whether he’d done it at all, or done it adequately,or blow up if something bad happened because it wasn’t done. Over time, I’ve had to keep lowering expectations, until I basically don’t expect anything of him. How much is this a sensible way of dealing with Parkinson’s, how much a dysfunctional way of dealing with a dysfunctional relation, I don’t know, but I do know it works better for me.
I’ve written on another thread that my husband’s executive function was significantly worse five years ago than now, when he was on high doses of a dopamine agonist. At the time, I thought that was the Parkinson’s, not the meds, so it’s worth considering whether that’s a piece of the puzzle for your husband - but what you are seeing might just be the progression if Parkinson’s.
On the upcoming surgery – there’s a huge grey area before “dementia” of “cognitive impairment” – and the line between those is very fuzzy. Most people who have had Parkinson’s for some time have some form of cognitive impairment – though it may be in areas that are not particularly important to their day to day life. Most centers will not perform DBS (Direct Brain Stimulation) operations on those who have “dementia” – but will on those who have “cognitive impairment”. I’d bet the same is true for the study your husband is enrolled in. If it makes you feel better, you could privately tell the doctors what you told us – and my guess is that the operation would go forward, because they’d call it “cognitive impairment” not “dementia.”
There are ongoing efforts to define “dementia” in PD – see, for example, at p. 1700 of:
http://www.movementdisorders.org/UserFiles/clinicaldiagnostic.pdf
or
http://www.lbda.org/category/5188/dlb-and-pdd-diagnostic-criteria.htm
The Clinical Demenia Rating Scale, not specific to PD, is at http://rgp.toronto.on.ca/dmcourse/toolkit/app5.htm; scoring is at http://www.biostat.wustl.edu/~adrc/cdrpgm/index.html (hint – you don’t just add up the boxes) – Rating is:
Composite Rating Symptoms
0 none
0.5 very mild
1 mild
2 moderate
3 severe

On our loved one’s awareness (or lack thereof) -
http://www.ncbi.nlm.nih.gov/pubmed/15739807
Anosognosia is an unawareness or denial of deficits…Forty-eight Parkinson disease patients …and 48 individuals identified as caregivers completed questionnaires rating severity of PD. …as a group, patients rated themselves as significantly less impaired on 2 measures of activities of daily living, indicating that basal ganglia dysfunction may alter insight into severity of illness.

By loola On 2011.04.06 11:14
Thanks for the info, Reflection. The last thing you said makes me wonder if nature arranged the lack of insight into severity of illness to protect the sick person from deep emotional and mental distress.
What about the caregiver though...:)?

By mrsmop On 2011.04.06 17:07
Loola...You hit the nail on the head. His cognitive deficits and diminished executive function are definitely not apparent when he is seen for brief periods of time. He would not be judged incompetent based on the normal tests used to determine competency, but there are so many areas where he can not perform normal adult tasks and functions. I am sorry to say that my frustration has gotten the better of me, and his PD is slowly tearing me apart. I think in some ways the caregiver does suffer more than the PWP. Not that I would wish this kind of caregiving role to anyway, but there has been some comfort to me knowing that I am not alone.
Thank you all for sharing.

mrsmop

By LOHENGR1N On 2011.04.06 19:36
I beg to differ, with a competent Doctor (Neurologist or Movement disorder Neurologist specializing in Parkinson's and Parkinson's Plus etc.) cognitive impairment would be noted and noticed even if the office visits were brief. These Doctors know what to ask and how to word questions. To many it isn't apparent that our exams have started while in the waiting room. The Doctors observe how we get up and walk in when called, how we enter through doorways, turn and seat ourselves. How we rise to leave, every movement we make even while just talking to them. How we interact during the exam. I know it must be hard for you caregivers to try to watch what the doctor is doing, voice concerns, and keep track of Us during the brief exam but with over 25yrs of observing Neurologists in exams I can tell you a lot more is going on and being observed than seems to be happening on the surface.

I'd be skeptical of a Doctor that said well it's better to have improved motor functions and dementia than bad motor functions and dementia. I would read this as a study and experiment dealing with motor functions. Not any Nero-protective possibilities, no slowing down of progression just stop tremors, staggering and slow movement. (Make it more comfortable for others to be around us if they have to be. ) Sorry if this offends but I'm offended by this kind of research and not concentrating on finding a cure. It also with this callous attitude looks like a case of let's operate and see what happens? And people wonder why I'm cynical at times.

By loola On 2011.04.06 19:55
I decided to inform his doctors of my observations and concerns, went ahead and did it. I feel that it would be irresponsible of me to cover up the truth about his mental status. It is up to them to evaluate and decide whether they shall procede with ceregene.

By Reflection On 2011.04.06 21:53
Michele writes: “My husband's doctors at a well respected Movement Disorders Center of Excellence just gave him the Mini Mental Status Exam which he always passed even though he had mental problems - particularly loss of executive functioning”
It is appalling that doctors at a well respected Movement Disorders Center of Excellence are still using the Mini Mental Status Exam in Parkinsons, because it is not sensitive to the cognitive problems most common in Parkinson’s. They should know better. See the study below:
J Am Geriatr Soc. 2009 Feb;57(2):304-8. Epub 2008 Dec 10.

Montreal cognitive assessment performance in patients with Parkinson's disease with "normal" global cognition according to mini-mental state examination score.

Department of Psychiatry, University of Pennsyvania, Philadelphia, USA.

OBJECTIVES: To examine Montreal Cognitive Assessment (MoCA) performance in patients with Parkinson's disease (PD) with "normal" global cognition according to Mini-Mental State Examination (MMSE) score. ..

RESULTS: … More than half (52.0%) of subjects with normal MMSE scores had cognitive impairment according to their MoCA score. Impairments were seen in numerous cognitive domains, including memory, visuospatial and executive abilities, attention, and language. Predictors of cognitive impairment on the MoCA using univariate analyses were male sex, older age, lower educational level, and greater disease severity; older age was the only predictor in a multivariate model.

CONCLUSION: Approximately half of patients with PD with a normal MMSE score have cognitive impairment based on the recommended MoCA cutoff score. These results suggest that MCI is common in PD and that the MoCA is a more sensitive instrument than the MMSE for its detection.

http://www.ncbi.nlm.nih.gov/pubmed/19170786?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_PMC&linkpos=2&log$=citedinpmcarticles&logdbfrom=pubmed

By loola On 2011.04.06 22:43
Reflection - that's interesting. I wondered how his doctors could have missed his cognitive issues. He appears normal, is witty and smart, but there are huge fluctuations in his mental status. Patients need to be evaluated more thoroughly and observed for a longer period of time than just a 20 minute test to arrive at any valid findings.

By susger8 On 2011.04.07 07:23
Loola, I think you did the right thing by telling the doctors. It might not prevent him from being in the study -- sometimes it's fine for a family member to complete the forms, depending on how the study is set up. They will know.

Sue

By susger8 On 2011.04.07 07:28
Reflection, sometimes a sponsor of a clinical trial has to use a scale that is not the best, because it's the standard scale that is accepted by the FDA and other health authorities for clinical studies in that indication. Unfortunately, doing clinical studies for neurological conditions involves a lot of subjective measures -- it's not like measuring blood pressure or the size of a tumor. Very challenging.

Sue

By karolinakitty On 2011.04.07 08:05
This month I am doing a daily factoid story on my facebook page about PD, involving both myself and my guy, plus comments and statements from others here on the board that i have communicated with off the board and with whom we have become great friends.
Probably like reflection, we have googled our fingers off trying to find out as much about this disease as we can and putting everything into perspective.
I think the big thing that we all here understand and need to understand is that we can google our fingers off and sometimes to no result. All the tests and all the studies vary. I found that while researching all i could about Lewy Body Disease/Dementia all the studies done, were done on those age 65 or older, not too many done on those with YOPD. or those who were diagnosed up to age 50, which fit our category.

We as caregivers see the worse everyday. We see the decline everyday and can sometimes take it overboard. we see them slipping away into what, we don't know, and fear sets in.
Doctors do not.... our friends...do not.... family ..... not... nobody really sees it as well as us.
We see it because we have lived with that person for 24/7 for (X)amount of years. We knew them before and we know they aren't "normal" now.
I say, that the only way to truly know this disease is to live with it and deal with things as they come.... knowing what's to come and taking it slow and steady.
I always tell the doc what I see... if I see he's going downhill I let him know.. if it's too bad in my eyes I call and leave a message. It's what we need to do....
We have not to this point done any trials mostly because of his dementia and the fact he has only been diagnosed 3 years..

I found that insurance reasons are a good reason to avoid or mention dementia. Some insurances only cover certain tests surrounding dementia. That is why the MMSE is the most widely used. I agree it's not enough for the PWP but I'll tae what I can get. Our Movement doc uses a test he created since he deals with interns in a teaching hospital. It is a lot further detailed.

By Reflection On 2011.04.07 09:17
I sometimes read, but don't post, on a forum for People with Parkinsons.
I just read an eloquent post there that directly relates to the topics we've been discussing - the impact of Parkinsons beyond movement - highly recommended.
Go to URL below, scroll to third entry - the one by Jaye
http://neurotalk.psychcentral.com/thread147638.html

I do apologize to anyone who has found my recent spate of postings a bit over the top. Indeed, I have spent an enormous amount of time googling to try to understand what I'm dealing with, and think through how best to deal with it. This forum has been enormously helpful, both in providing practical information, reassurance that I'm not alone in dealing with what I'm dealing with. Thank you, everyone; in sharing your journey you have helped me with mine.

By Michele On 2011.04.07 11:25
loola, proud of you for letting the docs know what is going on and then letting them make the decision. It's the best thing.

By NW_Raven On 2011.04.07 12:40
Your comments, Reflection, on the Montreal Cognitive Assessment (MoCA) test are very topical for me. Just two days ago my wife and I went to her 6-month checkup with the neurologist at the local university's Parkinsons Research Centre. I had alerted the doctor and social worker attached to the clinic to my wife's potential cognitive effects (I say potential because I have only a feeling based on many small things over many many months) so the appointment stretched to 3 hours as they tested and interviewed her carefully. Unfortunately, the only overt cognitive test was this MoCA. It looked really lame to me -- number recall, identifying pictures, and whatnot. Also, they gave my wife the results (30/30 she proudly declared). On the other hand, the neurologist did order a brain scan ("as a precaution").

To give the neurologist and her team the benefit of the doubt, she may be just setting a baseline for future observation of my wife's cognitive abilities. But I can't help but feel disappointed with such limited assessment of her executive functions. I am worried that if their limited tests don't find anything, they will start to discount my observations. Already, I have a disconnect with my wife's family, who all think she is doing fine. She is, in their company, because she gets so up for family social occasions. It is when she gets home that she crashes.

By parkinit On 2011.04.07 16:04
Where have I been? This dialog is great. I likened what Reflection and mrsmop describes as my spouse having ADHD (he lacks attention and when I leave the room, he forgets what he was doing and is distracted by something new). I've found that I even buy into HIS distractions sometimes by allowing ME to be distracted by his "newest task" or assisting him with his "newest task" thus taking me from what I was doing. Don't do this - you'll never get anything done! :)

I would agree that you did the right thing in notifying doctors about the additional cognitive decline and I would have written a letter or something so you had proof that this was submitted to the study doctors. It was said to us that if my spouse had dementia before DBS, that it would make the dementia worse after DBS. I had a niggling feeling that we were BEGINNING to see a few traces of dementia before the study, but now, 2 years later, I have no doubt that he has dementia and it is getting bad lately where he has time frames throughout the day that he cannot remember.

Beware of studies and how they may impact the qualify of life for YOU and your PDer.

By daisy On 2011.04.17 15:06
Hi Raven,

When I read your post, it was, as if, I had written it. I had exactly the same situation with my PDer recently. I had kept a record of all the little (and not so little) incidents that had worried me over the last few months. I informed his doctor before our visit and he produced the MoCA, which my PDer completed without any problems. His doctor promptly announced that he had absolutely no worries about his cognitive function at all. I was so disappointed. Don't get me wrong, I don't WANT anything to be wrong with my PDer, but I know, without a doubt that there are major problems and his doctor made me feel like a malingerer..or worse, neurotic..
It's disheartening to realise that they just don't see what we see, or that they don't listen to what we say and we are ones left to pick up the pieces everyday, to deal with bad times, worry about what the future holds and feel that we are completely isolated. I mean, where do you go when your doctor doesn't listen. That is why this forum is such a lifesaver! Friends, family and it seems doctors only see what is put in front of them for a few minutes at a time. In their case, ignorance definitely is bliss. Anyway, I just wanted to you to know that I understand where you are coming from on this one...

By makrivah On 2012.12.19 00:12
This thread has been invaluable to me. The cognitive issues of PD have been difficult for me to accept as "Normal." The comments here are spot on. I too keep lowering my expectations only to lower them again. Taking over all household responsibilities is huge. Thank you for sharing...it helps me...a lot.

By Reflection On 2012.12.19 06:51
Wow. I just reread this thread.
First reaction - yup, we collectively have it nailed. And it is hard, very, very hard - for us, for our loved ones. Particularly the "ambiguous loss" - something is gone, sometimes it's subtle, sometimes glaring, but we who know our loved ones best, who spend the most time with them see it, have to deal with it. Sometimes with "showtime", their neurologist doesn't. Family members and friends who don't live with them can also think they're "fine". The lack of support makes dealing with these issues much harder, both practically, and psychologically.

Second reaction - with another almost 2 years progression -

a) The cognitive issues are real. Very real. Even if we're the only ones who can see them, for a time.

b) Some cognitive issues are actually medication issues - that is, a change in medication can lift the fog. Sometimes.
For us, the dopamine agonists were horrible, horrible - even my husband recognizes that now. Too much Amantadine might also have caused fogged-in conditions. It's very hard to know. Persons with Parkinson's have to take medications - sometimes, a lot of them - and how they interact, or their side-effects can mess up cognition. But sorting out what's the PD (the neurons, their connections, their neurotransmitters are gone, or no longer working right) and what's the medication (imbalanced neurotransmitters) - very hard. And even if cognitive issues ARE caused by medication, if they need the medication, they'll have the cognitive issues. I just urge all to consider tweaking the medications. And I urge all caregivers to write, privately, to their loved ones neurologists with symptoms that are difficult to discuss in front of their loved ones.
Not that it's done us much good, and that's with the head of a movement disorders clinic at a major hospital, major city, who literally "wrote the book" or, rather, pamphlet on "dementia in PD." She should know better. [Yup, I'm venting here]

3. Last - consider hearing issues. I realized my loved one was having hearing issues, especially sorting out content from background noise. Some of his "confusion" in conversations with groups may have been seizing one word that he heard out of context, and running with that.

I am so grateful for all on this forum. Thank you.

By parkinit On 2012.12.21 22:25
I just read this, too, and there is some great info therein.

A neurologist told me several years ago that at some point my PWP would cease to comprehend the severity of his disease (that mechanism of my PWP "checking out" as mentioned in this thread several times), yet at this point, it would toughest on me. I really get that now. We are there.


© 2003-2017 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you