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By purpleduck On 2010.03.02 19:51
Hello my friends.

I'm 27 and my dad has had Parkinson for about 17 years I believe. He has all the symptoms you'd expect, the most visible, right now, are the unvoluntary twitches all over the body.

My mum is the main caretaker for him. She helps him getting dressed and all, still she stays most of the day outside home. My dad is therefore home alone most of the day...

He occasionally falls, but the situation isn't so drastic he needs surveillance the whole day. We'll probably get there soon though.

Now, my mum wakes up very early and stays the whole day outside, why? Because being next to my dad is very hard. Many of you probably know why it's hard to be next of somebody who has Parkinson, but I wonder how many had an actual mental breakdown because of the unpredictability of what a patient can do or say. I am reasearching as much as I could on the cognitive aspects of Parkinson, because I'm fairly confused on how my dad is doing on this specific point.

He doesn't have dementia. It can't be. He does reason, and occasionally with exceptional clarity even on very abstract level. But he does have some strange behavior and thinking and this is what makes mine and my mum's life difficult rather than the "expected" Parkinson signs.

I'll say it all straight and clear. Since a few years, my dad began watching porn movies anytime during the day. He does that in the hope nobody watches, but he does that at night with my mum sleeping right next to the tv. If I "bust" him, he turns the tv off and pretends like he was doing nothing, utterly denying he was watching porn. I asked him corteusly to do that when nobody could easily get him while watching porn movies. Apparently he tries but that's where I began looking for "parkinson lack of judgement" on Google...he definitely doesn't calculate well when it's time to do it and when it's not. He's home alone most of the day so it's amazing he needs to do that while both me and my mum are home.

He does a couple of gross things related to this which it's not necessary to mention, I'll just say nobody dies because he does that, but definitely they make me ask myself if my dad is still able to think clearly. That's where I'm confused.

He does think, but how and when? One could say his thinking is extremely rigid, absolutist, black and white, and at times downright bizarre. Still I wouldn't call this "dementia". Maybe he's on his way to that? But "cognitive problems" seem more adapt. I'll give more relevant examples.

He owns no money, but he keeps promising money to all his sons and daughters (we're three). This brought us all into exhaustion as he made us have beautiful expectations that never came true. My sister lives on another continent: my dad promised her money to buy a plane ticket and go visit the family out of nowhere. She said thanks, booked the ticket and had to pay it herself because she never got any money from him. He STILL says she would get it, after two years. This has happened innumerable times. He all got very neurotic because of these and other lies and promises never come true of my dad. The promises are sometimes so beautiful you'd think he's downright evil in making them while there is no reason to think he could make such dreams come true. They're simply out of nowhere still, he manages to make up some reason that sounds like it makes sense, for which we always end up hoping in them to regularly get disappointed.

But since this has happened about a hundred times, I now say "thank you but no, there's no need you do that for me" directly. When I do that he calls me ingrateful or something.

His days are rather boring. Basically he simply injects his current med inside his body, turns on the tv and reads in front of it. His readings are monothematic, of mystical nature (some really mystical, others pretend to be so, he doesn't seem able to distinguish) but he intermits them with gossip magazines. I don't really thinks he truly reads, though. He's not capable to put his mind on one thing, he gets way too easily distracted. Therefore he reads a little, then gets distracted by the tv, then goes to another book - without any criteria at all.

He's addicted to the phone. The phone makes his life miserable. He spends days just to make a phone call and usually he doesn't manage to talk to the person he had to talk to. It is difficult to explain, try to get the idea.
His usage of the phone is so obsessive and noisy (he talks loud and repeats the same things over and over again) I had to find a solution while I'm home, that is turning it off. Please believe me when I say that I was going insane. There is no limit to how much he can use the phone, to how many times he can repeat the same absurd (total lies) things to people on the phone (basically he tells them he can't make it to the appointment today and postpones it to the day after, when there is no reason to think he could make it then since he has a motory and neurological disorder) and obviously, the bills are what they are.

Now, from some things I say it may sound like my dad has some dementia. To be honest I am starting thinking that. Still occasionally I talk to him and I somehow manage to have a reasonable discussion with him. He can still, occasionally, give wise suggestions. This is what confuses me. Also, he's been like that for years and the motory symptoms are much worse, while these bizarries are only slightly incremented. We can say he watches more porn while I'm home than two years ago, yes definitely he's less pudic than before. I underline how he DENIES the obvious regularly.

More confusion is made on the fact that he has always had bizarre ways, for at least 25 years, way before his hand began to tremble showing the first signs of Parkinson disease.

He has always collected magazines literally filling his bedroom with them, so many magazines it was hard to move around. Towers of magazines of all kinds. They stayed in the bedroom for years, until something happened by which they were moved elsewhere. My dad has always said that he "had to organize them before throwing them away", in the prospect of keepng some article. Obviously it couldn't happen, we're talking about dozens of thousands of magazines, and in the end they were threw away. My dad has now began a new collection.

There are other bizarries of my dad. I need not to mention all of them, I'll just say that all this made my mum, me and my siblings very nervous while living with him. His illness is already difficult to hold also for carers, but the mental aspect of it made our family life almost impossible, and I am only now beginning to think that Parkinson is altering his thinking in some strange way.

It is possible to talk to him, but one needs to be wary of sudden unreasonable promises and statements, an optimism which is utter delusion, not to mention the fact that when my sister finally arrived here from another continent with her money, my dad barely said hello to her, to go back into his room and continue his reading/tv like nothing.

My dad has also not participated to my sister's wedding during the beginning of his illness (it was barely visible). One could think he simply was ashamed. But he never confessed that and preferred making a completely crazy excuse up that he still holds today. He didn't give a damn that the whole family was deeply sorrowed but his lack of participation to his daughter's wedding.

My dad's situation, in a word, is complicated. Ah, one last thing: his usage of the phone got to the point that it was impossible for me to stay home and work, like I was supposed to do at that time. I had a nervous breakdown, sequestred his mobile phone as he was talking two phones at a time and he really didn't need that (he has no responsibilities, and no job obviously) as an uttempt to regain my sanity, and tried to make regulations and a schedule for times where phone was allowed at home (my dad has always been despotic and never allowed others at home a voice on any matter). My dad, uncapable to follow such light and reasonable agreements, kept talking at the phone loud every single minute of the day in a very anxious tone, making the atmosphere at home the same I'd expect in case of imminent bombings. My mum perfectly agreed with me. I was desperate as I was trying to digest several things related to my dad illness but this one was the one I couldn't bear as it was not allowing me to either distract, relax or work at home, the only place I would think of doing these things. I cried, even told my dad I was thinking of committing suicide if he was keeping doing that. I admit this was bad but please consider I was exhasperated by something as silly as a phone: my dad would make the noise of twenty people in a very busy and stressed out office (a hundred cows, my mum once told him). I say this in order for you to understand that despite the severe risk of his son committing suicide (I didn't know what to do) and me explicitely warning him, my dad DIDN'T MAKE A SINGLE CHANGE. He kept using the phone in that way, till the day I tried to forgive him while I packed, in tears, and moved out despite not having any money to do that. I have no idea how, but I survived.

What I feel for my dad is a combination of forgiveness and compassion, and sheer loathing.

Because I can't sitll make sure how much of this is his own will, and how much "demented" he is - therefore not acting by his own will. My current idea is that he definitely has something going on, that worsens the defects of character he already had: stubborness, excess pride, etcetera. Making his company almost, unfortunately, unbearable. I am very sorry it had to be this way. I tried to be compassionate with him only to be hit on my back. If he does that with reason or not I can't really tell. Neither me nor anyone in my family. I tried to talk to him about this with tact, but he pretends he doesn't have any problem, like he's perfect in his thinking.

Last thing I'll add is that he eats about once every ten minutes, mixing the strangest foods at the strangest times.

Maybe you could indicate whether you've seen similar behaviors in other people affected with the same disease, and share tips on how to cope with this...thank you.

By karolinakitty On 2010.03.02 20:31
My first suggestion would be searching this forum on the topics you have described, for informational purposes.

Many of our pdrs have dementia, compulsive behaviors ( sexual,gambling and shopping) and other "mental" disorders. Whether by meds or the disease itself, is always debatable, but it's there regardless.

One thing to remember is that intelligence does not go hand in hand with dementia. While they may forget things from 5 minutes ago, they can remember things from years ago. Perhaps reading into dementia itself will help you understand the complications of it. Go to the Mayo clinic website and type in the search for "dementia" they have many articles on it.

There is so much info on the web these days, most of your questions could be answered there, or at least give you something to think about. Google everything, that is a great way to find your info. It takes time and effort, but if you really want to understand what he is going through, that is a good way to start.
If you know what drugs he is on, research them. Most of them have side effects that are similiar to what you describe. Recent surgeries have an impact also.

There are so many things to consider regarding whether dementia is what he has. we are not doctors and only can go by our own life situations. If your mother feels that this is the reason then his neurologist can test for this. If she thinks it is something else, since you mentioned his "problems" earlier in life, then she should see about a mental health screening.

I hope this helps a little.

By purpleduck On 2010.03.02 21:05
Thanks karolina...

I have began reading several posts in the forum, and in fact they make me feel in "company" as for dealing with this kind of stuff. My dad might also be very forgetful of agreements made (my phone agreement), due to Parkinson, what I don't still understand is the strength of his denial power in the face of harm to beloved ones (if he still loves us...). He might prefer seeing a dear one die than admitting something obviously true that would be functional in making clarity over a situation. He would then never confess his responsibility, or act very childishly sorry to then get back to usual business. Do you now understand why I feel some loathing? How can I love a dad like that. The thing is, I know a lot of perfectly normal people who do that even not to that extent...so one wonders where the dementia begins...or where it's simply bloated pride made even fatter by increased age...

But, I am also afraid to say things I would regret. I said a lot of bad things to my dad in the past out of exhasperation, and I hope I can stop doing that. It's that he has this amazing ability of making a huge problem out of something so small, like a phone. Or also the sexual misbehavior might simply be fixed by him not denying it (not asking for him to confess it...) and simply changing behavior even tinely...thing that he'll never do. You know what, I really think he's got dementia. Maybe I should go book a screening for that.

By karolinakitty On 2010.03.03 07:15
One thing i didn't mention was the child like behavior. When you read up on dementia you will see this mentioned. It can be like having a 2 year old in the house. That is the approach you sometimes have to take. We are not at that point. Mine is still in somewhat early stages so his "behavior" is still pretty good. He will say whatever he thinks, he no longer is non-confrontational but that can be a good thing at times. As you read posts here you will see the child like behavior and how folks deal with it.
I don't think it is intentional that he see a loved one die. More or less it's the "child like thinking" that is allowing him to feel this. You know as a child we were selfish in our thoughts, whatever we could get we sure tried hard at it. Being right, or thinking we were always right or we knew it all, promises we didn't keep .... all that stuff reverts to our childhood. You might see it as a reversal of time. Instead of getting older, we revert backwards to childhood....
Don't waste your energy trying to argue, it gets you no where. Again, like dealing with a child......pick your battles..... time is short ....
Are there any hobbies he once had that he could get back into.... fishing, golfing, walking, any of those things he used to do that maybe you could do together. Better to try and occupy his time with something he likes, other then the wrong things....... as for the sexual behaviors .. he might need to get counseling for that, as with most addictions, denial is big and probably won't admit he has a problem... This too should be brought up at next doc visit. It is a side effect of requip for sure.....

By susger8 On 2010.03.03 07:38
Purpleduck, after you read some of the archives, you will find that all of your dad's strange behaviors are (unfortunately) seen in other people with PD. He's not deliberately being difficult -- it's part of the disease, or the effect of his meds. It's very hard not to take these things personally -- we all have had these experiences!

Compulsive behaviors -- porn, gambling, shopping -- are very common. If your dad is on Mirapex or Requip, these meds are often associated with compulsive behaviors. A change in meds sometimes helps. Your family should keep a close eye on the charge cards and credit accounts -- people with PD have been known to run up huge bills for their compulsions. I hope your mother has a power of attorney document for your father.

My father is in the late stages and is confused and hallucinating nearly all the time. But if I ask him a question about my car, he has a perfect answer at his fingertips. It's very mysterious sometimes.

Sue

By purpleduck On 2010.03.03 11:23
Thank you all.

What a strange illness. As said elsewhere the mental aspect is the most difficult for caretakers! I regret not getting informed about it sooner. My mum seems to not really want to know...she's a bit in denial too. It would help us all to have a culture of the fact that he doesn't want to do what he does.

"Compulsion" perfectly describes many of his behaviors, especially the phone usage, which is utterly compulsive, and the rest. It is almost impossible for him to stay still for ten seconds, he stands up, sits down, move somewhere else...it is very difficult to sit down and talk to him. His mind always wanders and he can't keep any occupation for more than few minutes. Uff!!

But yes, browsing the forum I see many people experience similar things. I'm glad I ended up here. My mum should do the same...I am afraid she needs as much help as my dad. Sometimes I get worried she has dementia too! She has some very strange thinking sometimes but I until now I thought it was down to stress. I hope so.

She wakes up at six in the morning, goes out and the whole day is a rush to forget about it all, until she arrives exhausted at home to prepare dinner. Done that, she goes to sleep. From what I remember she used to be able to enjoy the moment, relax, perform some activities - not anymore. She is always rushing, somewhere. She is keeping herself busy, to the point of workaholism.

As usual talking to her about this helped little...she thought I was the devil as I mentioned eventual problems she (we) might have, only to be able to discuss them and fix them! Our worst arguments began just this way. Waste of energy! She didn't get I was trying to help.
But the situation is delicate and I decided not to talk to her about this anymore.

As for me, damn it's hard sometimes. But this because I was ignorant on the "dementia" thing. For sure my dad's intellect is messed up, being so by dementia or medical side effects.

What makes it hard is the comeback of reason just occasionally. It really is betraying!

All I can do is accepting this and not put my heart in any of this.

By Reflection On 2010.03.03 12:52
Purpleduck -
If I've got the math right, you were ten when your father's PD symptoms first surfaced (you're 27, he's had PD for 17 years). My kids were about the same age when PD entered our family, and have been dealing with it's fallout for ten years. Your sanity, your compassion, your ability to articulate what's happening is inspiring, and I only hope my kids are somehow able to deal with the the impact of PD on their life as well as you are doing. You are an inspiration.

And your description of your mother - yes, dealing with this can make you half - maybe 3/4 - OK, 11/12 crazy. Having your "normal" mother back would help you - and her - but that's another loss you have to deal with.

You are wise to know that you need to detach - "not put my heart in any of this".
And that helps, and is good, but isn't enough, because we can never detach enough from the people we love - or love & loath - for this not to hurt, badly.

On your father's symptoms: very familiar. Yes, the behaviors you've described are common with advanced PD. It also sounds to me as though he's overmedicated - his porn addiction, his compulsions, that "it is almost impossible for him to stay still for ten seconds." Ideally, his doctor should be balancing what he needs to stay mobile, and mitigating the behavioral symptoms so the rest of the family can preserve their sanity. It also may be high time - overdue! - to add medications that will reduce his behavioral symptoms.

I've slowly come to the realization that saying "it's the disease" does not end the discussion. A symptom may be caused by PD, the person with PD may not be able to control it - but it also may be unacceptable. I believe the symptoms you described are caused by the PD -but they are also making your and your mother's lives unbearable, at least when you are around your father. Approaches to dealing with this:

a) remove yourself from his presence - you & your mother seem to be doing this - or recognize it is time for a nursing home.

b) reduce his symptoms - by changing his medications. Best way to do this is to edit what you have posted, including not just his symptoms, but what they are doing to yourself and your mother, and give that to his neuro, perhaps even with specific suggestions. For example - take him off requip, add seroquel. If you can't go to an appointment with him, and your mother won't be willing to give such a letter to the neuro, send it yourself. And make sure he has an appointment with the neuro soon - you should not live with this any more.

c) Learn all you can, so you better understand what you're dealing with. It doesn't stop the hurt, the frustration - but it does help. So glad you have found this forum.

d) As you've noted, distance yourself. Your "old" father would never have wanted to cause this pain - but if you were ten when PD appeared, you can barely remember what your father was like before this disease changed him. Be kind, be compassionate, but be firm in maintaining your right to your life, to your sanity - whether that be via adjusting medications, or removing yourself from the fray. Bonus points for protecting your mother, by insisting on this, even over her objections - but you are under no obligation to do so.

It is so unfair that you are having to deal with this. I'm sorry.

By purpleduck On 2010.03.03 14:59
Dear Reflection,

thank you very much, you seem to know exactly where I come from.
Accepting my dad lack of judgement - being this recognized and attributable to the illness/medications, is a big step forward towards regaining my own sanity...I still need to talk to my mother about this and the steps you suggested about medications can well be performed, although I don't put too much faith in this - I have heard at some point, it doesn't make much difference. But I'll do it anyway!

You're right about my dad being over-medicated. I do not know what med he injects inside his body basically all the time and presumely by his own, imperfect, judgement. I a not in the States and the meds might have a different name, I suppose. I'll find out.

A question about this: my dad injects that med all the time because he says it allows him to MOVE. What he hates and can't stand about the illness is the paralysis feeling. He says that without med, he gets paralysed with extreme cramps in the body.
I haven't heard much about this "paralysis" symptom. Can you tell me if you've seen it? What is the worst that can happen in these cases? Would the paralysis flow away by its own, or the med is the only way he can move again (with the usual extreme twitches all over the body, of course)? I need more info about this.

My dad has changed medications innumerable times. I am sure, though, that the doctors aren't aware of his behaviors at home (the various compulsions). I don't remember if I mentioned the fact that he goes in the kitchen and prepares something for himself to eat two to up to four times per hour. There is obviously no way to control this. My dad is very skinny though, and he's been like that for years. His original constitution is, I would say, normal. I suppose he consumes tons of calories with his involuntary movements.
So, I am sure my mum pretends everything is alright at home even with the doctors. She probably hasn't told anyone about the porn and all the rest, she's way too ashamed to do that. Therefore you're right - I should go to a specialist and tell him about the behavioral symptoms that until now we underestimated. But now with some distance I can tell these were much more of a burden for the family than the physical ones.

As for the nursing home, I am sure something can be arranged, and the emotional obstacle is for my mother a bigger one than the financial one. My mum isn't rich, but I think something can be done. Unfortunately our family at large is not very helpful - very selfish I have to say, or, not realizing fully how it is to live with this situation. We might be able to get help from someone, though, also here my parents haven't been able to organize and dismiss my ideas as I'm the younger in the family. With perseverance and patience, though, I am sure soon we'll find an arrangement for my dad and I'll be very happy for my mum will be able to relax. Or will she? I am a bit worried about this, it might be a shock for her not to have my dad around anymore. She might have a breakdown only then, which she would anyway in case my dad dies. What do you think it's best to do? I am afraid the nursing home won't necessarely make things better for my mum - which is what I would target, as my dad would be pretty much the same everywhere - he has become strangely indifferent. He would sometimes complain but most of the time we would be ok. Yes, he is not fully himself, definitely. You're right, I remember little of my dad when he was in health, but I can tell his strange behaviors of the past have simply become intolerable now.

Thank you again reflection, your message did me good. Please don't worry as I'll find a way to manage as I have always. But you're right on how hard it is. Seventeen years, wow - it's been quite a journey already.



By Reflection On 2010.03.03 23:40
Dear Purpleduck:
on nursing home - it may be that the solution your mother has come to works best for now - that is, having your father home, but being away much of the day. She's probably the best judge - but might welcome it if you brought up that you see it's hard on her, and that you know what an effort she's making. And that discussion might make it easier for her to consider a nursing home when the time is right. The financial and emotional strain of moving your father to a nursing home might outweigh the relief from not having to deal with his behaviors. So it might well make sense to first see if adjusting his meds reduces his behaviors.

I do think it would do your mother a world of good if you could introduce her to this forum, and if you could communicate, however you have to do it, with your father's neurologist about your father's compulsions and behavior. I think both embarassment and a misguided sense of loyality and privacy has likely prevented her from speaking about these issues. It's also possible that she has not had the opportunity to speak with the neurologist privately, and fears your father's displeasure if she does. So your intervention here could be very helpful -you could ask the neurologist not to disclose your communication to your parents.

On the injections - I don't have much personal knowledge.
Could it be Apokyn (apomorphine hydrochloride) Injection 10 mg/mL

http://www.ncbi.nlm.nih.gov/pubmed/16368444
Does this sound right?

"During the clinical development program for subcutaneously injected apomorphine, patients required a mean of approximately 3 rescue doses per day."

If this is the medication your father is using, he may be using way too much - I have heard that this medication is particularly prone to abuse. See:

http://dailymed.nlm.nih.gov/dailymed/archives/fdaDrugInfo.cfm?archiveid=5019#section-10

Potential for Abuse
"There are rare reports of apomorphine abuse by patients with Parkinson's disease in other countries. These cases are characterized by increasingly frequent dosing leading to hallucinations, dyskinesia, and abnormal behavior. Psychosexual stimulation with increased libido is believed to underlie these cases. Prescribers should be vigilant for evidence that patients are abusing apomorphine, such as use out of proportion to motor signs"

also http://www.rxlist.com/apokyn-drug.htm#
"Drug Abuse And Dependence
Potential for Abuse: A rarely reported motivation for apomorphine abuse (escalation of dose beyond prescribed frequency) is the use of apomorphine to attempt to avoid all symptoms of all "off" events when "off" events occur frequently. A second, rarely reported, motivation for apomorphine abuse is a psychosexual reaction related to the stimulation of penile erection and increase in libido. Adverse events that have been reported in males with overuse include frequent penile erections, atypical sexual behavior, heightened libido, dyskinesias, agitation, confusion, and depression. No studies have been conducted to evaluate the potential for dependence when apomorphine is used as acute (rescue) treatment of "off" episodes in the patients with "on/off" or "wearing-off" effects associated with late stage Parkinson's disease."

If this describes what your father is experiencing, you should tell his neuro about it. By the way, I may be getting cynical, but when a drug company reports certain side effects as "rare", I've learned that they tend to be way more common than the drug company admits. Kind of like unintended acceleration with Toyotas. Thus, the really dreadful compulsions - shopping, gambling, sex - that many users of dopamine agonists (requip, mirapex) experience surfaced only gradually, but are now shown to occur in 20% of those using the (per Mayo Clinic)
http://www.mayoclinicproceedings.com/content/84/4/310.abstract?ijkey=f9f806f40b7ebec7c1063d6b9868d9ac463db19b&keytype2=tf_ipsecsha

Again - I admire your great good sense, your balance, your sanity and compassion while dealing with a terribly difficult situation. Good luck, and I wish it were easier.

By purpleduck On 2010.03.04 12:41
Hi Reflection,

I have just checked: apomorphine hydrochloride it is! This is what he injects in his body all the time. Consider I don't live in the US nor UK so the names of the meds are probably different...

By "off" events you probably mean when the patient's movements are slowed down...but my dad has for years complained about actual paralysis.

He's definitely had an increase of diskynesia in the last three years and think that's when he began using injected apomorphine, but I should check that out. I don't remember him taking it previously. The increase in involuntary movements I thought were the normal development of Parkinson's. But the fact that abuse of apomorphine cause that is interesting. Unfortunately it seems like my dad prefers moving too much rather than not moving at all. Therefore he performs the injection to be able to move. We of course would prefer him moving less...the diskynesia makes eating very difficult for him and impossible for those who are next to him! He just kicks everything. My mum eats very little, maybe my father next to her discourages her.

This is what my parents claim:
my dad did not have Parkinson's, seventeen years ago. He simply had a form of nervous breakdown. A specialist thought it was Parkinson, and prescribed him a medicine that caused all his other symptoms...could it ever be? This is what my parents say, that the first doctor misdiagnosed him with Parkinson. Could the meds cause a Parkinson he did not have at the beginning!? I have no idea of what med it was, but I can find out.

My dad could not stand the withdrawal from the med (paralysis) therefore he kept taking it and changed medications several times since then.

Do you have experience with this symptom of paralysis? Is it dangerous? Does it fade away by itself?

I have heard my dad in an argument with his brother today, and he (his brother, my uncle) was complaining of the exact same things we complain: that he was being unreasonable, compulsive and denying the obvious. One more proof there is something going on and he doesn't do it with me or my mum only.

For years I thought my dad was "sort of silly" in some concerns but this "dementia" aspect or whatever we want to call it explains a lot. He's had several compulsions; years ago he would change the furniture and position of objects in the house almost every day, the house was different every hour. After fighting for months, with my mum being exhasperated, my dad passed on to porn, and he has some light gambling going on too, as he frequently buys lottery tickets - don't know if he would do it in normal conditions. The amount of useless magazines he buys is simply excessive but this has been even before the illness, apparently!! He is addicted to tv, he can't imagine being without - more than earlier, but now he's at home the whole day without a single hobby that is not phone calling or reading...

I wish my dad had an hobby, an interest. I was hoping he could have fun with the internet but obviously usage of computer is for him almost impossible due to the twitches, and there is no way he would use it moderately if he could, not go into porn sites, etc...

I'd like my dad to have a hobby and a reason to live but sadly I gave this hope up. He reads books, and some are good too, and that is fine - but there's nothing else, nothing. He does not desire going out for a walk, for example - assisted of course. He does not want to see other places, and he seems fine with this - it is not that he's depressed and doesn't think it's worth it. Mood wise I think he's almost fine.
He's pretty much in his own world and this doesn't allow him to participate to discussions about the family, for example...and this, I suppose it's the illness.

I need clarity on this "paralysis" symptom...

By Reflection On 2010.03.04 13:33
I can't help on the paralysis - my husband is not that far along. I have heard that it gets harder and harder to move.

On what your father has - I would be astonished if he doesn't have PD. PD seems to surface often during or just after a particularly stressful event or period. But he sure seems to have all the symptoms. It can be damn near impossible to separate out what symptoms are caused by the PD itself, what by the PD medications - some are caused by both.

PWP (=Persons with Parkinson's) tend to be understandably touchy about anything that indicates their PD might be causing cognitive/behavioral/mood issues. There's also a whole lot of denial. But I'm glad you got a reality check from your uncle. And it might help your uncle to understand his brother if you show him that obsessions, etc. are pretty common symptoms of PD. Maybe even show him this thread.

On your father's overuse of his medications, here's a few quotes with sources to explore:

"Dopamine dysregulation syndrome (DDS), sometimes known as hedonistic homeostatic dysregulation in Parkinson disease, is a dysfunction of the reward system in subjects with Parkinson disease (PD) due to a long exposure to dopamine replacement therapy (DRT). It is characterized by self-control problems such as addiction to medication, gambling, or hypersexuality."
http://en.wikipedia.org/wiki/Dopamine_dysregulation_syndrome

"Reducing dosage of Parkinson's drugs can cause symptoms similar to those of cocaine withdrawal"
http://nyp.org/news/hospital/dopamine-agonist-withdrawal-syndrome.html

"Since dopamine is also involved in learning, memory and motivation, the chemical helps us pay attention to the information we need to survive, act upon it, and remember it for the future. But drugs hijack that machinery, sending 5 to ten times as much dopamine surging through the nucleus accumbens and forcing the brain's motivational and attentional mechanisms to focus purely on the drug. It becomes the most interesting and important thing in the world. "In any addicted person, what's salient is the drug," says Volkow. "There's no competition." "
http://neurotalk.psychcentral.com/archive/index.php/t-29041.html

good luck

By Emma On 2010.03.05 06:34
purpleduck, I really don't have anything to add or advice to give you, but I want to welcome you to the forum and offer you sympathy and support. It sounds like you are in a very difficult and complex situation with your dad. I also want to thank the other posters who have given you information. It's interesting and I have learned some things that I didn't know. Good luck to you and your family, and again, welcome to our "forum family".

By LOHENGR1N On 2010.03.09 19:53
Hi purpleduck and welcome to the forum. Parkinson's Disease is also called Paralysis Agitans or Shaking Palsy. purpleduck, "off" is a general term used to describe periods when our medication isn't working, it can describe as movements slowed down or even the inability to move at all. Different from "freezing". In extreme cases it is almost like flicking a light switch "off" then when med's kick back in it's like turning on a switch and being able to function again. As this disease progresses our response to med's is erratic. Our med's can cut out then kick back in again so it is important to work with the Neurologist on dosing because one may think the medicine has worn off and dose again only to have the med's start working again and ending up overdosing the patient. Parkinson's is a progressive disease that has no cure this said many or most things that develop don't just fade away by themselves. In fact they tend to over time increase. Unless they are side effects from med's and those med's causing them are adjusted or withdrawn then they might or will disappear.

Ask Your Dad if by paralysis what he means and about how long these bouts last. He might be experiencing "Freezing" and not know what it is other than inability to move. The dyskinesia can be caused by both or either the med's or disease. Some people feel it's better if they can move more freely even with the excessive movement others would rather move less or slower without the excessive movement. Really if you think about it however the individual patient feels most tolerable and livable with is what matters. If uncomfortable next to Him sit out of arms reach and hope his aim is bad. It's very hard at times to view but we must remember as hard as it is to watch We the patient have to live inside that body and it is rougher in here.

There is a form of medically induced Parkinsonism mainly medicine use to treat mania (caused by overload of dopamine in the brain) however when the med's are stopped the Parkinson's symptoms disappear.

Moving furniture, gambling, porn are signs of compulsive behavior again can be disease and or med's causing them. I wish I could tell you just what is and isn't with Parkinson's however when you read postings here you'll see that it is a crafty disease and very hard to pin down also these Medicines We take can cloud the line of disease caused or treatment caused.

purpleduck, get a bird feeder for outside a window and a field guide to birds in the area. Or a fish tank. fill it up and maybe in time Your Dad will gain interest in watching the kinds of birds outside feeding or watching the fish. These might spark a easy hobby He'll gain interest in.

See if you can find out more of what He calls paralysis and post, We'll try to pin it down better for you if We can. Take care, best of luck and hang in there.

By mylove On 2010.03.09 22:22
Purpleduck -
One of the beautiful things about this forum is that we not only have caregivers that have experienced most of the road that you will walk down, but we also have patient contributors who can give us unique insight on what the patient themselves may be experiencing. Al and his cohorts may be able to give you the pieces you're missing when you try to understand what is making your father tick, especially when it seems like what your father does is not making sense. We're very lucky to have both sides of the fence represented here, and between the two groups, can usually come to some aid most times. Welcome, and may you find what you need here. :)


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