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Topic I didn't take heed, not really sorry though, just confused. Go to previous topic Go to next topic Go to higher level

By nawlenz On 2009.12.05 14:41
Prior to marrying my husband I came here because I didn't really know what to expect with Parkinson's disease. I remember reading "run!". I loved my husband then and I love him now.... but he's really starting to become different. Even a relative said he is becoming more aggressive and it has been noticed that he's changed. I can't really name all of his meds because to me, he doesn't have any symptoms. He says some of his meds are controlled substances - okkkaaayyy... He says he has frozen twice while driving but I have never seen it. He says he use to freeze a bit when he walked but I've never seen it. To me, he looks just like he did when I met him. But...he's not acting that way. He's flying off the handle and getting mad for nothing. He acts like he just hates me and asked me to leave the house...so I did. Part of me wants to try again but my gut is saying...if he wants you gone..and now you are...it might be the best thing because things are only going to get worse. My mind however says, maybe not...maybe they will get better, maybe this is just an episode. Is it??? I'm so confused. It's either I really didn't know him before we married or... I don't know him at all anymore now.

By annwood On 2009.12.05 16:54
Sorry that you are going through this. There have been a few people ask about marrying someone with PD and those of us who have fought the battle have given our honest opinion - it is usually not appreciated. I have been very honest in saying that I would never volunteer to go through this but also realize that not everyone is going to experience what I did. I would NEVER go through that again if I had an option.

In reading your post I think that you need to educate yourself some more on PD. All of the meds are controlled substances, freezing is very much a part of the disease as are personality changes. If your husband is freezing while driving he should not be driving. He is placing himself and others in danger. The PD person commonly ventilates to the caregiver because they feel safe in doing so. You are the person there for them. They are frightened, anxious and physically exhausted much of the time. They know that you love them and that you will be there for them - it isn't easy but you do it. I really doubt that he wants you gone but you are correct in assuming that things are going to get worse. This is a progressive, neurological disease. Despite the fact that you do not see these things they are happening and perhaps your husband is trying to let you know this.

I thought about leaving most of the time but knew that I could never do it (I am an Irish, Catholic riddled with guilt). It did make that vow "for better or for worse, in sickness and in health" take on real meaning. Only you can evaluate how much you can endure and you should not feel pressured by other people. This is your life and you have every right to lead it in the mannere you want. I loved my husband very much and I realized that his actions were the disease and not him but it was still VERY, VERY hard. If I had had a crystal ball that foretold PD and dementia I would never have married him.

I would suggest talking this over with your husband and his neurologist. Get some counseling if you think it will help. Stay with us and we will try to help.

By karolinakitty On 2009.12.06 01:01
Here's a thought for you ....
Jim and I have only been together 5+ years, he was only diagnosed not quite a year now but knowing the symptoms now showed signs at least 3 years ago.
As we all mention, each person is different. So far i've been blessed with non-psychotic episodes,aggressiveness,mood swings,etc.
Here is my thought and something to discuss with the neuro.
While on the phone with his neuro we partially discussed, FLS, Frontal Lobe Syndrome. Since this last MRI, which we never got results from(thanx nurse), he's thinking this could be involved also, due to his brain injury(s), meaning several sections of the brain were affeceted by the beating.
I did some reading on FLS, and found it enlightening. Many of the same symptoms are part of FLS as well as PD. The more "mind" issues were wild. Talking out of turn(constantly), eating food off of others plates, rudeness, agressiveness, and the list goes on. I also read that some of the typical drugs used for these psychotic episodes with PD, cannot be used on FLS patients. Same brain, different section, different purpose, different drug.
Maybe the neuro never thought FLS, it usually is caused by trauma, but not always. If this be the case, the drugs might be wrong, causing more episodes than "normal"

By Reflection On 2009.12.06 11:37
I have no answers, just thoughts.

First: this forum is a self-selected group that is trying to make caregiving work. Those who have bailed out aren't here - or aren't here much. The fact that people check this site means they are still deeply involved with their LO with PD. Keep that in mind. You aren't getting a cross-section of those who have dealt with Parkinson's. I think this group is skewed in at least two ways: we tend to be dealing with later, major, bad stuff, and we tend to be more committed, for whatever reason, to sticking it out.

Second: You have one life. You'll hear a lot that you need to take care of yourself so that you don't burn out, so that you can take better care of your Loved One. OK, true. But also true that you deserve a good life FOR YOURSELF.

Third: Damned if I know whether your Jim's symptoms are the Parkinson's or his meds - but from your description, I'd bet on the meds. I now believe that some of the roughest stuff I had to deal with was from inappropriate/over use of Parkinson's meds, not the Parkinson's itself - though it's very difficult to tell. I say this because over the last four months or so, my husband's combativeness, aggressiveness, meanness have gone way down, and his cognition hasn't - as far as I can tell, he's mentally as "smart" as he was (and that's pretty smart) - though his executive function is shaky. Unfortunately, he won't let me near his neuro - I've a couple of time resorted to communicating with the neuro behind his back, typically with very unpleasant results, as the neuro told my husband, fueling his paranoia. So I don't really know what's going on with his medication - but I do know that he's a hell of a lot easier to live with.

On driving - requip or mirapex (= dopamine agonists) can make the person space out or fall asleep suddenly, with no warning. If this is what he's experiencing (freezing is different, it's what you described - but consider) - getting off the requip might reduce or eliminate this symptom. In my experience, it also might reduce the nastiness/combativeness. Dramatically.

This disease can be very hard to deal with - for the person with it, for the person living with the person with it. What none of us need are "unnecessary" additional problems - like those resulting from overusing parkinson's meds, not the parkinson's itself. Though - very, very hard to tell. There are articles about Machiavellianism (lack of traditional morality) and lack of empathy in those with PD. We've experienced both, as well as the somewhat different hairtrigger anger/combativeness, meanness. My take: the lack of empathy/traditional morality is the PD itself, though perhaps made worse by the drugs. And the anger/combativeness/scariness was mostly overuse of PD meds.

One way the kids & I learned to tell my LO was taking too much Parkinson's meds: he'd talk faster ("pressured speech" is the neurologist's term), he'd lean forward, he'd walk fast, he'd drive "angry" - very aggressively, tailgating, too fast - we could just tell. Another hint that it may be the meds - if his mood fluctuates dramatically - the Dr. Jeckyll/Mr. Hyde thing - though when my husband was most misuing his medications, he seemed angry and scary all the time. If these signs resonate, what you're dealing with may be reversable, because it's due to the meds, not the PD itself.

BUT - this is a huge but - you may not be able to get him to use the meds more appropriately. I found his neurologist was very little help. They call it "movement disorders" speciality, and they focus on movement - which is what the patient tends to care about. In my experience, and from what I've read on this forum, the patient tends to care more about movement than about mood/cognition/behavior - and indeed, overusing the PD medications might make him feel GREAT! It's Dopamine! The same neurotransmitter that crack cocaine releases! So getting him not to use too much can be very hard.

Last - that being the case - you need to set some boundries. It took me forever to figure that out, I thought it was psychobabble - but it does help. What will and what won't you put up with?

For me, the boundry was fear. I refuse to be afraid in my own home. I refuse to be afraid driving with him, or having the kids drive with him. A somewhat more permeable boundry - I refuse to live afraid that he will destroy the family financially.
The porn, etc. I can ignore. Rather to my surprise, but I can.
But fear - you can't ignore it, and it is very bad for both your mental and physical health. I realized the kids and I had been walking on eggshells, terrified that we'd "set him off" - but anything might set him off.

I realized I was honest-to-god suffering from Post Traumatic Stress Disorder-(PTSD) when a friend who'd served two tours in Vietnam, bad fighting, came up behind me once -I jumped a foot. He said - you've got worse PTSD than I ever had - you can't keep living like this.

As you're figuring out how to proceed - one sad fact. Trust and intimacy are very tightly coupled. I believe it is not possible to have intimacy without trust - and unfortunately, given what I've gone through, I do not, can not, and I believe will never trust my husband again. Fear, for too long, does that. That said, he's living at the family home, and all is far calmer than a year or two or three ago - because I have sent some boundries, and I don't engage with him much emotionally, because when I do, he turns it against me. Arid? Sad? Empty? Lonely? Oh, yeah. How does he feel? Hard to tell - but the apathy/withdrawal seem real, and he seems not to much care. Why do I put up with him living here? I don't think he can make it on his own at this point, and his quality of life is far better living here than it would be living elsewhere. I don't think I can or should do the "hands on" care so many here do, and when he needs that, difficult as it will be, a nursing home will be the only solution that will work.

So - you have something of a window of opportunity here, either to get out, or to set some boundries. You'll have to figure out what boundries work for you, but ones I should have established way earlier: that you can communicate, privately, with his neuro, that you know all medications, and how much, that you don't have to put up with being scared of him. Maybe - that you don't have to put up with him having a secret life - medications, finances, internet, etc. Because if you don't establish these boundries, now, your relationship will not, in my opinion, be worth saving. And if you can and do establish those (or other) boundries, it may be.

I wish both you and Jim the very best.

By LOHENGR1N On 2009.12.06 13:08
nawlenz, I really don't have anything to say except what I said before.........educate Yourself. I'm sure you were referred to many of the org's. web sites online A.P.D.A., N.P.F. to get information. Go to the top of the page click home then click resources. It is amazing the questions you asked. They say love is blind but............to not educate yourself to a disease like Parkinson's when considering marriage? It's not like the disease developed afterward, you knew going in. To marry or not isn't or wasn't anyone's discussion to make except yours. However to come clueless as to what to look for or what is "normal" or what's next? I'm sure others stressed Parkinson's is progressive, stressed that you can't ignore it and stressed educating yourself as much as possible to know somewhat of what may come. I have no answers for you. I'll leave you in the care and capable hands of these wonderful caregivers here.

As an aside being a Parkinson's patient myself and from a patients point of view.....I think in a situation like this a patient just might wonder themselves just what is going on? In His own way He might have been trying to get you to educate yourself as to His disease instead of hearing I don't see it or is it an episode? One thing I do know you can't remain seemingly clueless and expect this to work. I may be reading the situation wrong if I am I apologize. I don't know, I'm not trying to offend just trying to puzzle this out and maybe find some answers for you. Take care, best of luck and hang in there.


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