I am wondering ( just a thought, as I've no experience with meds, yet, and am not a medical person) if your husband needs a change of meds in order to change some of his emotional behavior towards you? Seems like I'm reading a lot of postings relating to people not feeling "right" on their meds, and making changes. Also, can you explain your "six-month review" in terms we can understand? Just what does that mean? Do you write a journal with notes, then see a counselor, or what? sometimes I find writing my thoughts and feelings -perhaps letting your partner read them later, easier than trying to explain how you feel out loud, to them, at the time. Please let us know how you go about this plan....
It's difficult to know whether it is the medication, the Parkinson's, or a combination of both. I kmow this doesn't help much, what I can say is that I didn't behave like this before diagnosis.
With regard to the six-monthly review, we are trying, as best we can, to forget I have Parkinsons' and the long-term implications, and enjoy each others company for six-months at a time. Although, I have to be strong enough to allow Maddie to "call time", if she feels it is getting too much. Also, Maddie needs her own outlets, as do I, when the time arrives...This not easy for either of us. There is no councelling involved, although a journal is a good idea, I am also trying to put a balanced synopsys of our time together, I'll keep you posted...
I guess I was speaking to Addledb., when referring to meds being changed so her hubby might have a change in personality. I wondered if it was the meds causing her so much distress. But I would guess that many folks with PD have a change, at times too. IF you are aware that this is the case for you, Andyj, your OH is lucky...tho I can understand that you would feel awful about saying things you are later sorry for. That must be difficult for you both.
I went thru something similar when I first met my OH 15 yrs ago. I'd just come out of a very abusive relationship, and was in therapy dealing with that, and my abusive childhood. There were times that in my mind I was afraid that when he was angry, he would also start to scare me by breaking furniture, etc., as my ex had done. I also re-lived some of my abuse as a child....and there was lots of crying and fear on my part -our first year together was really difficult for him. He did not understand what I was going thru, and it felt to me that it would never end. Like living in a real nitemare.
We made it thru....I was on no meds, so it was all me and the abuse....but we're still together....he's the first man in my life that has been caring....and I thank God every day for him! I do hope that you both will check into different meds...see if it does not relieve some of trying behaviors for all of you, as it sounds like you really care about one another, both.
off to get some work done.....hope today is a better day for you......
Thanks for this, there is some similarity here. Occasionally, if I raise my hand too quickly ( just to scratch my nose ), Maddie will flinch as if I were going to hit her. This is because of an abusive realtionship she had to endure. I must stress that I have never threatened her physically,or verbally. However, I have reacted very badly to some situations, this has led Maddie to inevitably draw comparisons. I do understand this, as I have been involved in an abusive realtionship before, so I try as hard as I can to moderate my response to certain situations. Over the next few weeks I will be changing my medication completely, I really hope this will work, because Maddie means everything to me, I really love her, sometimes too much. I would never intentionally hurt her.
It's good to see this thread has continued as I have been really helped by it in the past, made a good friend from it, and got some first-class advice. Looking at the recent entries I see that many of us experience the same thing, and the word 'turmoil' is the only one to use. Those who remember my input may be surprised to learn how things have turned out. My husband has come off Mirapexin and although he is really struggling with all sorts of symptoms, he is more rational, and has also given up the pseudo-relationship with the overseas woman. So we spend time together as friends now, and I have postponed the divorce. MarieL, your words to me were perfect: I am extending compassion and care again, and he has to earn my trust and love. Meanwhile, I find that with the three months that we have been apart I can see things more clearly and objectively. I think the partner of a PwP has to deal with an ongoing state of fear of the future, and a lot of effort has to be pitched against that. I'm trying hard to be positive. My husband really appreciates it now when I come to hospital appointments with him, as he suffers from terrible anxiety but isn't anxious if I am there, as I understand him and his condition so well. In turn, I actually get some pleasure that I can be of meaningful help. I don't know whether we shall ever live together again, but I hope we can remain friends. I found it agonising not to be in touch, not to know how he was ... even though at the same time there was relief that I didn't have to look PD in the face every day. The hardest thing of all is to accept the loss of our partners as they WERE and to not feel resentful and angry. It is a tragic illness in the way it damages relationships, but this seems to be so common. We need to keep talking about it.
I'm afraid I "reverted to type", and Maddie has quite rightly had enough. I hate this disease so much, and I hate what I have become. This will be my last post for a while, good luck to all.
Itâs great to hear that things have improved so much, Surrey Dreamer. It is astonishing what a difference the medication can make â a little more of this or a little less of that, and suddenly you are living with a different person. I guess itâs easy to forget how powerful these drugs are.
And for Andy and Maddie, perhaps this story can give hope. Andy, if you thoroughly review your meds as you plan, that could help bring the relationship back on a better footing. Who knows if that will be enough? But you also say that you hate what you have become (because of PD) and thatâs a terrible feeling to have â maybe a med review can at least bring back to you a more familiar self.
I have sworn an oath to Maddie ( my idea completely ) not to contact her in any way, that I cannot break, I cannot keep putting her through this. I'm not sure she will ever read about these meds.
Yes you are right that meds make a big difference, trouble is it seems so unpredictable whether they are good or bad and what the right ones are for each individual so its like playing russian roulette. I don't want to scare anyone but my hubbie was prescribed drugs that made him compulsive and anxious without the benefit of any great improvement physically. So he stopped taking them and some months on is better mentally now than he as been for ages. It really is a case of trial and error and I cant begin to imagine how it feels to be faced with the option of taking possibly mind altering drugs with little knowledge of how you will be affected. At first he just took what was offered with no question, believing the specialists knew what was best for him and hoping for some miracle improvement. Now he is more cautious. I really think there needs to be a requirement for better monitoring of people's mental health on these drugs by the consultants so problems can be picked up, its like "away you go, see you in 6 months" (if you remember to make an appointment). It is hard to know what behaviour is caused by the disease itself and what is a normal reaction to the stress of being diagnosed and living with a major illness. Either way the emotional effects can be hard to live with for the PWP and their loved ones. However I am so proud of how my Hubbie and people on these forums do manage to cope with the situation they have found themselves in, by whatever means. By having a break from things you do get a fresh perspective, and hope and love can overcome the fear and hurt in time. I suppose I try to remember that every relationship has its ups and downs and there is no guarantee, you both have to work at it even if you don't have something like PD to contend with. My hubbie has to put up with my faults and issues as well of course! I will enjoy this good period and try to forget the past problems and not worry too much about what the future might bring. Reading posts on the forums does help me as I really haven't anyone to talk to who about this and so I hope my ramblings can help others in a similar position in some way.
I read that you and Maddie are apart for now.....I'm sure you have a lot to sort out, and agree with the others that checking on your meds might be part of the solution. I do think that writing a journal might be enlightening, and also theraputic for you. Even if Maddie is not reading the posts at this time, we hope you will keep up with us....let us know how you are doing?
Spot on, AddledBedraggled! How can we tell what changes in behaviour are caused by the disease itself, what is a side effect of the drugs, and what is a natural reaction to being ill / losing your job / being scared for the future? And thatâs just the PwP. How can we tell if our own reactions as carers are caused by concern for the PwP, fear and sorrow for our own losses, or a general reaction to changes in the relationship? Itâs appalling how little information one is generally given about this by the doctors â do they think telling us the truth up front would scare us off?
Or maybe they donât even realize what itâs really like. My sister used to work the evening shift as a nurse on a neurology ward with lots of Parkinsonians. One day all the staff got called to this big meeting with the neurologists who wanted to talk about the latest research which showed that PD just might also have a cognitive element. The nurses nearly wet themselves laughing â theyâd known this for ever, of course, but the neuros in their neat little offices with their short little appointments and quick little ward rounds had no idea.
Hi, yes the journal is a good idea, I will try and post it weekly on Myspace. I will remain positive, as this is my basic nature, however, it doesn't stop me feeling negative when I reacted irrationally. It would be too easy to blame it on my condition, medication etc. I need to do some thing about it - quickly.
well, we're rooting for you here in PD land.....glad to hear you'll be doing the journal. I'll light the candle for you again tonite.....pray you get back on a better footing with Maddie -yourself, at first. Let us know how things go here on the postings....I'm not into Myspace or any other the other sites like that....not enough time.....don't want my whole life taken up by the computer...I limit my time, so I spend quality time with my family instead.
Maddie went on a walking/climbing short break (Sat to Wed) âto get away from it allâ, it has also been recommended as part of the therapeutic treatment to deal with her needs. This is entirely understandable as it has been a difficult year so far and she needs a break. However, my insecurities come to the fore and she is given hell by me during this trip, and on her return. Because she doesnât reply to my text messages, and my phone calls, I âflipâ and then proceed to send her sarcastic, hurtful messages, then turn up at her flat, and make the most awful accusations and hurtful remarks than I can possibly think of. Whilst I am spouting all this drivel, I am fully aware that I donât mean a word of it, but still it keeps coming. Maddie finally has enough, and screams some home-truths back at me, this shuts me up immediately and I become thoughtful. It is not in Maddieâs nature to raise her voice, or to be hurtful, she has absolutely no malice in her whatsoever. Okay she may be a bit blunt at times, like we all can, but she has no harm in her. Also, I know how Maddie feels about me really, when she takes a photo of me, then looks at it, there is genuine feeling in her eyes, my behaviour is inane and banal.
As I have said before this is not me, although there must be an element of this behaviour in my basic sub-conscious. At least I still have my humility, so I seek out the urgent help of a psychiatrist friend of mine. This man is godsend, he puts me right in so many ways. However, quite rightly, Maddie has decided she has had enough. Walking on eggshells, having to put up with my outbursts and my insecurities, is no basis for a relationship, she doesnât want to see me this weekend. I am distraught at this news, not angry, I do not come out with anything hurtful, or nasty, but plead with her to reconsider. Finally, after much persuasion , Maddie agrees to see me on Saturday afternoon.
Maddie and I met on Saturday, we finished up having a good weekend, until the PD cloud descended upon us. I have reset my expectations to zero regarding a long-term relationship, this is to align with Maddie. I will not be calling, or texting, no need for oaths, or anything quite so dramatic. Maddie is free to contact me at anytime, this is the only way forward we can see that has a chance of working.I am okay now ( I think! ).
I have been reading your posts and I am very sad to say I think you are both grasping at straws - I feel you both "love" each other but it is not the "LOVE" that you both need - maybe a break for while could let you both think and sort out what your needs are - right now you are both in turmoil and you are both hurting and going no where - please forgive me if I hurt your feelings
You are entirely correct, we hold the strongest feelings for each other, you have not offended me in any way. I have just emailed Maddie, unfortunately, I cannot handle the way it is now. I can handle the no contact stuff in between, but I need to know that we are still in arelationship, and that I will be seeing her on a weekly basis, at least. I know this puts unfair/unwanted pressure on Maddie, which I absolutely hate to do, but I have to work on definitives. I would rather assume it is over, than this uncertainty, I guess this would be easier for us both in the long run, if only it were that simple. At least I am not going to explode, I am certain of that.
Maddie has decided that we must end it, I am disappointed that we have reached this point, and will miss her of course. However, I have to respect her wishes on this, as she believes it will be best for her in the long-run. I did write a journal covering the last two weeks, and I'm glad I did. However, I will not be publishing, or maintaining it, because after review, I find it too negative. There is only so much you can write about feeling miserable, and how much someone wants to read about it. It is time for me to be pragmatic, I saw my neurologist recently and he has prescribed me a new set of drugs that will stabilise my condition for many years to come. In his opinion he sees no obvious reason for this treatment not to work. Maddie is aware of this, but I understand the difficulties she has, because it is obviously not a cure.. Therefore, I need to look forward, be optimistic about what future I have, and discover the opportunities that may lie ahead, not write every day about how I am missing Maddie, and how miserable I am. I have left it with Maddie to consider having a relationship on an ad-hoc basis, whereby, we lead mostly independent lives and see each other when convenient for both of us, unfortunately only she can decide if this is acceptable, but there is no pressure on her whatsoever. This leaves me to thank everyone for their kind words, if Maddie remains convinced this is the end, then I wish her the very best of everything that life can give her. There is no âRelationship In Turmoilâ any longer, so I have no more to contribute on this subject.
Good luck, and more importantly, good health to anyone who reads this.
Here is a newish twist. I have posted on this topic a few times, now my relationship is in turmoil.
My wife has never been a carer. To be fair she is also a terrible patient. She cant cope with ill health.
I went mental on my dop.amine agonists, but we got through that. It was very rough for a long time.
Now I've developed falling on my ass, thre latest one half an hour to go. hot chocolate down the walls the full nine yards with me sitting in a puddle of it. I was starting to try and see the funny side until the misses started going berserk. How she must have been really terrible in a past life... etc etc.
I started to say that i'd clean it up, but she was raging. I wasnt going to reason with her so I did what I was told and got out the way.
So far tonight I've banged her elbow with my laptop, nearly knocked her over in the kitchen, spilled copious amounts of beverage all over the place, the worst being the hot chocolate. Oh and i've put a hole in the living room door whilst opening it as I was sprinting as fast as that Bolt chap, I cant spell his first name, lets call him alan wells.
My question is really how much longer can I inflict this misery on her. Wouldn't leaving be the kindest thing to do. :I'm upset that she is upset. This whole year, well its now getting hard to remember when it wasn't abject misery.
We love each other, no doubt about thar, however I'm killing her, stopping her having a life, falling apart before her eyes bit by bit day by day. ;I really cant watch her watching me, its not what i wanted for her.
Before it was an intense sadness, now its giving way to anger and resentment, on both sides.
I can cope on my own. I'm content that one day we will be cured of this pd'y-thing.
I'm kind of answering my own question are'nt I. Its time to go... It will be hard, but its right.
Any advice would be welcome. It hurts to think about it, but its got to be done.
I haven't quite got to your stage yet, I spill things of course, but in my opinion, I am no worse than the next person. However, some of my mood swings have been terrible, and I have really hurt Maddie. Sometimes, I have deliberately insulted her, in some kind of magnanimous way, so that she would give me up for her own good. I don't know how she stood it.
You could give going on your own a try, what is your wife's view? It won't be easy going alone, you will need some help, I am quite a self-assured person most of the time, but I find it very difficult at times.
