I’ve read the current thread about whether Parkinson’s UK should warn of the dangers of Dopamine Agonists. This is my experience.

Yesterday would have been my 29th wedding anniversary. Would have been – but wasn’t. Seven years ago, aged 46, I was diagnosed with Parkinson’s. I knew immediately that the only way to cope was to pretend that it wouldn’t affect me like everyone else. I was the ‘carer’ in our family; I was the one who understood everyone else’s needs and made everything alright. I couldn’t be the one who needed ‘care’ – that’s not the way it worked.

I was desperately frightened but I tried to hide it. Eventually I realised I had to try and explain to my husband how I felt. All I wanted to hear was ‘Don’t worry, I’ll look after you’. Instead I got irritation, impatience and anger. I knew it was because he was scared – I was the one who held the family together, who was always there to sort things out. What would happen if I couldn’t do that anymore? It was too scary to for either of us to contemplate. We dealt with it in our own ways; he got cross, I tried even harder to put the Parkinson’s on one side and carry on. It was really hard but I managed it . Gradually we started the long journey of coming to terms with a changed future. I finally accepted that I should try to help myself by taking medication. I was prescribed Dopamine Agonists.

I’m haunted by what happened next. I keep going over and over it, beating myself up. I started madly doing ‘craft’ (never having done in any sort of ‘craft ‘in my life) shutting myself in the garage for hours, painting, glueing, carving – all of it utter cr*p of course. I know now it’s called punding. My husband was completely bewildered. He went to our surgery and told them I was going ‘mad’. Unbelievably, he was given a box of Valium, by a locum, to ‘calm her down’. I returned it to my apologetic GP – but no one thought to review my PD drugs.

Then I totally lost the plot. I began to listen to people telling me that I shouldn’t put up with the way my husband treated me. I probably even sought them out. They had no idea about my marriage –it was different, but it worked. My husband was a bit odd but not deliberately unkind. I’d always trusted my own judgement but now I completely lost faith in it.. I started to challenge him. I can see now that I was being unfair and unreasonable; he was totally thrown by my behaviour so of course he became more and more confused and angry, but I just carried on.

Finally, I met an ex-boyfriend. I knew he was shallow and selfish and boring – that’s why I’d dumped him 30 years earlier- but when he started wheedling, telling me he’d always loved me etc etc and would leave his wife to be with me, I believed him. . (What an idiot!!) I allowed myself to get drawn into a stupid, stupid ‘affair.’ My head felt as though there was a whisk in it; I couldn’t think anymore. I told my husband I wanted 3 months apart so I could try to sort things out.. In reality I had no idea what I was doing – I’d completely lost touch with reality. . My husband refused – and he got more and more aggressive . My doctor was very concerned – my husband was cast as the bad guy.. In fact he was simply terrified by the transformation in me. No one bothered to find out what was really happening, they just kept shoving more and more DAs into me and I got more and more lost and more and more out of touch with myself. A friend recommended a solicitor and suddenly I was divorcing him. Divorce!!! I didn’t want a divorce! Everything seemed completely unreal. I had lost all my bearings. So I hid in the garage with my paint pots and pretended it wasn’t happening. I convinced myself something would stop it. My husband refused to leave and screamed at me – yelling that I was no longer the woman he knew. It must have been terrifying for him. Meanwhile, I was living in fantasy land, pretending nothing was wrong, certain that it would somehow all work out. Why didn’t I just ring up my solicitor and say ‘Stop. I don’t want this’? It tortures me every minute of every day.

When I eventually summoned my last shreds of sense and came off the DAs I found myself alone, surrounded by the ruins of my life. Marriage gone, security gone, health gone, family gone. (Of course the ex-boyfriend didn’t really want me –far too comfortable with his long-suffering wife. And I certainly didn’t want him.). So now, the day after my 29th wedding anniversary, after 4 years of trying to convince myself that somehow it will all work out, I finally admit defeat. I have wrecked my own and my children’s lives. Their father, still ravingly angry with me, is about to marry a woman who refuses to let the children be part of his life. They are distraught, as are his parents. I try, but I can’t make everything alright for everyone any more. My son has Aspergers. My daughter can’t cope with the thought of future responsibility for me so she’s moving abroad.
I have fooled myself for years that I can cope but actually I can’t.. I am so lonely. I read posts on here from people saying they couldn’t cope without their partners, and it feels like razors ripping into my soul. Because it’s all my fault. There is nothing to look forward to. The logical thing is to give up now before I’ve got to the drooling stage and while there’s still money for the children to inherit. . Sometimes I wake up and think for a moment it’s a terrible dream. Then I remember and it really, really hurts. I can’t know what would have happened if I hadn’t taken the DAs, but one thing is certain - it couldn’t possibly have been any worse.

Penny
I wish I could help because that's a sad story. All I can say is that if people who are supposed to be close can't understand us then we need to find people who do. I am sure most partners feel irritated and cheated of a future at times but there is a limit. I strongly feel people should be warned of side affects. I never understand doctor's reluctance to 'come clean'. I think they think what people don't know about won't affect them, Sadly not true. I hope you have now been put on other medication and are feeling better. I think it is safe to say that once one has reached rock bottom the only way is up. Although I managed to avoid such extreme reactions to the drugs so far (on Sinemet) there are plenty of people in various PD forums who share your experiences in one way or another and will understand. My gut reaction is that it might be worth talking to your ex husband and giving him a few examples of what can happen to people on PD medication. Good luck..

Penny, my heart goes out to you with a big hug. From what you say you come across as a caring person and none of this is your fault, its the disease and the treatment you had for it that has led to this situation, not your conscious actions. If you made the choices you did when the balance of your mind was upset how can you be responsible for the outcome? It seems to me like you really need some help right now, I hope you can get that where you are or even from people in this forum.

hi Penny,

Like the others I think what has happened, is indeed very sad. Especially with the estrangement of the children. I do hope your meds have been changed, and you are managing better now. Perhaps now would be a good time to consider a therapist. You might want to check and see if your insurance covers the cost. I went to a really good one, when I was getting my divorce years ago....and also dealt with my abusive childhood. I have moved on, and my life (except for the PD) is a much better one. I will light a candle for you tonite and pray for you to find some resolution and peace.

hi everyone, not posted for a few days , recently on my last post ( side effects) had got the go-ahead to go on mirapexin prolonged release , but reading up on this drug and reading about people,s experiences and research , have declined to go on mixapixin due to the long list of side effects this drug has.
to tell you the truth is scares the life out of me !!! so decided to put on hold the treatment for another a few years . rather preserve than go on dopamine agonists something will now refuse .
im sure the doctors can give you other drugs without using the standard treatment of you have to go this,,and this in order.today we have got a break from the rain in cumbria and im going out for a walk .janine

Dear Penny,

Thank you for sharing your painful story with us, that is a very hard and courageous thing to do. We all need to know how badly it can go wrong so we can get better at recognizing the signs before someone gets into the kind of terrible situation you were in. You have suffered some damage in your life that cannot now be undone, but by talking so openly about it you are giving immensely valuable help to many others.

One more thing. I don’t know what your children are like, but trust me: they don’t want their inheritance yet.

All the best,
Marie

Now i know you are not gonna like this and i normally would keep my nose out but...... did i read right that your blaming your DAs for the factc you cheated on your husband ?? Its like me going shoplifting and blaming my tablets. I know its a mega shock finding out you have PD and its stressful for you and your immediate family but to blame your infidelity on your tablets is outrageous. I know this forum is about help and understanding and i myself have benefitted from using this forum and i know certain people have bad side effects but surely not every bad thing in life can be attributed to DAs.

Hi Big M,

It is a well-established fact that DAs can lead to all sorts of comulsive behaviours in upwards of 20% of those who take them - leading otherwise sensible people to turn into shopaholics, gamblers, sex addicts, etc. I see absolutely no reason not to believe Penny's interpretation.

You might want to read a thread in the Carers, friends and family section called Cross roads with relationship in turmoil. Sadly, Penny is far from the only person to have experienced this kind of thing.

All the best,
Marie

Hi Marie

Yes i fully understand different people have different side effects to various DAs. I myself am having mood swings with my amantadine but my point is that life problems are not always down to the tablets people take.

Hello all, I was diagnoised ten years ago and was a 'victim' of DA's. It has left us fnancially bereft and we are struggling to hang onto our home. I really dont think Big M reaaly understands the issues surrounding Dopermine Agonisit and I sincerley hope he never has to experience the side effects first hand. Its all too easy to judge others and we are not here to do that. DA's have been responible for marriage breakups, court appearances and financial ruin, never mind prostitution and other sexual difficulties. So big M please deo think or at least do some homework on a subject before you critise others.

Glenchass