Cross roads with relationship in turmoil


#1
I am in such turmoil. I entered into a relationship with a wonderful man 14 months ago and fell in love. He was diagnosed with Parkinson's 4 years ago aged 49. Yes I knew at the time of the condition but nothing prepared me for the reality. Because a relatively new relationship I don't know if the mood swings are down to his personality or the condition. We both realise that we are at a crossroads. We don't spend as much time together as we used to. He feels rejected if I want my own space to get on with my life, see friends etc or just for my sanity and flies off the handle at the slightest thing. I do have a busy life socially and with work. The next day he will be more rational and understanding but I know that the situation will occur again with him walking off somewhere leaving me in tears feeling guilty, I can only scratch the surface. I have to watch everything I say and I am so exhausted with it all. Aside from this my trust in him is diminished. Gambling, deceit and debt have played a part in this. He wants to make amends but there is so much for me to take on. He has suggested we arrive at some kind of compromise with the relationship but it is down to me to make a decision of what I want from him. Whether to continue or not. He lives some distance away and has suggested trying to get sheltered housing near me so he doesn't have to travel or stay with me but at least he will be near by but it is down to me. Basically if I don't want to continue then he wouldn't move. I fear if he does, away from family and friends he would rely solely on me and I don't think I could do it. His mood swings and behaviour are too much

#2
If you have any doubts, and you do seem to. Don't commit is my advice. You would have to be very sure of what you are taking on. It would be a huge commitment.
Pd comes in all forms and your friend seems to have a lot of issues going on. Better not to start something you would not able to continue.Looking after someone with PD takes a lot of love and patience. I have looked after my Other Half for thirteen years, for me its not a problem but it is hard work.There isnt a lot of ME time to be had. Also I do not have to deal with gambling.
Take your time and be very sure.

All the Best annesel

#3
Thanks Annesel and Observer. This is such a complicated subject and I wonder some times if the meds might play a part in changes to his mood and behaviour. He says Ropinirole controls mood and that his mood swings really only occur when I am being "generally evasive".

#4
Hi Maddirax
My husband was also diagnosed at 49 (18 months ago). If you want someone to talk to you are very welcome to send me a private message and i will do my best to help you with any fears/concerns you have. As for the gambling you've mentioned, i believe Ropinerole is a dopamine agonist. Search this forum on the subject. Some people are prone to addictions including gambling which they cannot control and this is caused by the drugs. There are alternatives. If i were you i would read up about this. Your partner/friend may not be able to control his addictions. Ask yourself or him..when did the gambling start? Before or after he was prescribed Ropinerole (or another DA).
I have also only been with my husband for 7 years. Married 3 and suspect he's had PD for approx 5. I totally understand where you are coming from re not knowing what may be PD and what may just be his personality.
Email me anytime.
All the best and welcome to the forum
Carrot

#5
Sorry ..Maddieraz
Wish you could see the post you are replying to!!
Pain in the derriere! :rolling_eyes:

#6
hello
Carrot is right - if he is gambling and taking ropinerole he needs to speak to his neuro right away and probably get an alternative drug.

#7
Hello Maddieraz
I have some experience of the side effects of taking Ropinerole and i did suffer from a complulsive disorder for three years. It took that amount of time before we, in particular my husband realised something was very wrong. I was in complete denial, so my guess is that your partner might be too.

He really does need to get off the drug if it's having these effects andd he needs to do it as soon as possible. He cant do this without help and advise from his neuro. He will need to make an apointment but i would strongly suggest thaat soebody goes with him...and tells the neuro the truth because he wont. It took my hubby to take control when I went to see my neuro about our concerns.

If you need any more inforrmation about how my compulsive disorder manifested please just ask or private message me.

regards
glenchass

#8
Yes I agreed. He does have an appointment with the consultant tomorrow and has promised to talk about the issues. There was a time that he was over medicating, hellish for me and I didn't realise until I spoke to the nurse. He was furious about me speaking to her and asked for a different nurse in future. Is there a Parkinson's counsellor or therapist that he could be referred to? For months I thought he was seeing someone and it turns out he was seeing a Gamcare counsellor, would this have been organised by his consultant?

#9
Yes I agreed. He does have an appointment with the consultant tomorrow and has promised to talk about the issues. There was a time that he was over medicating, hellish for me and I didn't realise until I spoke to the nurse. He was furious about me speaking to her and asked for a different nurse in future. Is there a Parkinson's counsellor or therapist that he could be referred to? For months I thought he was seeing someone and it turns out he was seeing a Gamcare counsellor, would this have been organised by his consultant?

#10
The same thing happened early in our marriage -- extreme mood swings, irrational behavior. We found out that the low dopamine levels brought on by PD affect mood. Antidepressant (Selegiline) solved the problem and it hasn't been an issue in three years. This is a side of PD that is not commonly known or written about. We had to figure it out ourselves.
All the best to you.

#11
Maddieraz, I'm sure most of your problems are caused by the side effects of PD medication, and that if you could first resolve this you'd have a pretty normal relationship. You need to sort this out before either of you commits any further to either your relationship or relocating.

I could send you numerous links to articles etc about the damage people have suffered from such drugs, but you have disabled private messages. You can PM me if you wish.

Regards,

K

#12
Hi wife thank you very much for your words of encouragement.

#13
Hi Kyle, yes please I would really appreciate any links you have that would help me learn more on the subject.

#14
Hi
I know I'm a bit late chipping in to the discussion (nothing new there).
I was on requip in 2005 for a year and, like glenchass, suffered from OCD. I'm still suffering from the repercussions now - but thats another story.
My wife and I had been together for 22 years at that point.
By the time I reached my max dose, she didn't know who I was and neither did I.
When I came off requip the OCD disappeared, however the trust she had in me and trust in myself went with it.
I'd go a bit further than glenchass, not only does he need to get onto another treatment and have someone go with him to see his consultant, I would say that nobody should be put on this treatment without their partner being told what to look out for.
When that side effect hits, the results can, and have been, catastrophic.
On the bright side, we are still together and figure that if we survived that, we'll beat Parky one day.
Eck

#15
Hi Eck, you sound so positive, thank you for your words. My man is not much better although the dosage of meds has been changed. He seems to have stopped the visits to the casino but as his only source of income these days is via spread betting the gambling continues. How does anyone with Parkinson's earn a living? I am so tired with everything. He is constantly suspicious of who I talk to, email and accuses me of things. I am miserable, I am depressed.

#16
Hi Maddieraz,
You asked about income.
Make sure you are both getting all the benefits you are due.
there is a ton of advice from the pd society.
dont let the dss/dwp fob you off.
As for a job. I've no idea.
Is the consultant aware that the behavior is still continuing despite the change in meds.
i.e. are you going with him. I know when I went I was admitting to nothing. I just wanted them to say your doing fine and leave.
I was horrible to my wife. I tried to drive her away on purpose, because i felt that was best for her. I was on a binge of self destruction. My poor wife's world was being torn apart by my idea of love.
IThe constant checking, as i'm sure you know, is him showing his insecurity, his fear of losing you. But behaving the way he is, is driving a wedge between you. He needs to know that. You both need to get that trust back.
He needs professional help and not the rantings of a rank amateur like me.
You may need to see a counselor, although he has the problem, you need coping mechanisms.
His Parkinson's nurse may also be able to get you to see a relationship counselor - apparently this is common enough among pwp's and there partners.
The last thing I would say is you really need to look after you first and foremost. That might sound really hard and go against the grain because you are all about helping him. This PD lark is affecting you both. The only way you can help him is to be as close to 100% as you can be. You be healthy, you exercise, you eat healthily, you have a social life. And show him its the only way to go. You cant follow him in the direction he is going in.
I wish you both a speedy resolution.
Eck

#17
This may seem really negative but I dont think you should stay in a relationship with this man, it will slowly destroy who you are and it is not healthy for you, and I think deep down you know this. Move on while you still can, painful as it may be for you both. Things will only get worse over time and you dont have a long history of good memories shared to see you through the bad times. It is likely to be the disease and/or the medication making him how he is, but that doesnt mean you have to live with the behaviour any more that you would do if he wasnt ill. I guess people on here want to be positive which is their way of getting by in the situations they are in but you have a choice to not go down that route. Good luck.

#18
I married my husband six years ago after living together for a few years; eighteen months later he was diagnosed with PD. The first couple of years went ok, but his behaviour slowly changed - temper tantrums, suspicions about me whenever I spoke to another man, withdrawal, complete loss of interest in the future or even holidays, and preoccupation with his memorabilia, reading his childhood poetry book every night (instead of the pile of books that he as publisher should be enjoying looking at!). He loves to watch television now, but only sport, and walks out if anything else is on. He seems quite happy in himself so I don't think it is depression. Quite frankly, I CAN'T STAND IT!!!!! and have been trying to get on with my own life. Recently I have found that he has started emailing an old mistress, sending her photos of himself and ringing her frequently. It's sad, because I know she won't take him on, and he will end up on his own for a while, but I have decided to leave him. I don't think people can be good carers if they are really unhappy in the relationship, whether the problems are PD-related or not.

#19
That's terrible Surrey Dreamer. Before you go, PLEASE PLEASE make sure the behavioural changes aren't caused by his medication rather than his condition. I myself spent several YEARS as a more-or-less lunatic, wreaking havoc for those around me, before it was realised it was all caused by one of the drugs I was taking. As soon as I came off it I returned to my normal lovely (!) self.

There are loads of similar cases. If you want more details "private message" me.

Please be sure that your old partner isn't retrievable by a simple medication change before you burn your bridges.

#20
Dear Surrey Dreamer,

That sounds like a nightmare, not a dream. And apart from the unfounded suspicions, it also sounds very familiar. My husband spent about a year watching TV - children’s TV, American teen soaps, you name it. He was glued to the couch and the box and not interested in doing anything or seeing anyone. He claimed to be perfectly content with this non-life, while I was getting more and more frustrated and unhappy that he seemed to be mentally slipping away from me into a cocoon of light entertainment.

We saw first one, then another psychologist. The first one thought I should adjust my expectations (which I did), while the second one said many PWPs have trouble with motivation and told me to keep pushing. Nothing, but nothing helped. In the end we were referred to a psychiatrist who suggested Ritalin to treat what he called ‘lack of auto-motivation’. Husband has been taking this for a couple of months now and the difference is really striking. He is now re-engaging with old hobbies, reading books again, out on his trike almost daily, suggesting shopping trips and walks and visits with the family. He still gets tired and needs naps and rests, but he’s alive again.

This is a totally off-label use of Ritalin and I’m not sure husband would have gotten it if we hadn’t been lucky enough to see a psychiatrist who specializes in geriatrics (so he sees lots of PWPs). It’s made a huge difference to the quality of life for both of us.

All the best,
Marie