I'd like to thank SlackAlice and Tamsin for your kind words of inspiration. I've always enjoyed writing but i must admit i do tend to get carried away. Thank you for all that read, i'm truly overwhelmed.

Cutiepie

Dear Germany
Having read and re-read your post and your follow up posts, it made me sit back and think what I could offer that might help you. After all, you have turned to the forum for support, you've been honest and open about how you feel and you are obviously going through turmoil trying to deal with the dramatic changes that are happening in your life. I apologise that I have not read all the replies on this thread so I may have repeated something said by someone else.
I suppose I'm in a fairly similar position to you. I'm 39. I married my husband 3 years ago and we have been together for 6. We also have children at home (mine, aged 8, 11, 13 and 16) and two older boys aged 17 and 27, the 17 year old is here at least once a week.
Firstly, even without bringing PD into the equation, the first few years on a new relationship are hard, particularly when you are adjusting to each other's ways and the additional upheaval of step-children. It isn't easy but it does improve with time, especially if you can keep talking. Your partner has probably had early symptoms of PD before his diagnosis. I suspect mine has had symptoms since shortly after we got together (perhaps it's my fault! Only joking!)
I actually feel very sorry for you, as it cant be easy having to cope with a PD diagnosis on top of all the other adjustments that the early years of a relationship brings.
What have I found that has helped us to cope?
Firstly, I have found it helpful to find out as much as I can about PD. Through reading this forum aswell as leaflets, internet info and books. The best books Ive read have been The Daily Telegraph, Parkinson's Disease, A Guide to Treatments, Therapies and Controlling Symptoms' and 'Parkinsons Disease for Dummies' - both available through Amazon.
Also, try not to be resentful if your partner is taking naps. It's hard but the truth is he is probably knackered - this is so debilitating. Now if my husband is crashed out asleep I'm glad. In my eyes he is taking responsibility for his health and I prefer him to have a sleep than to walk round like a bear with a sore head growling at everyone.
I have round that through accepting (and not under-estimating) the physical changes and supporting my husband, he is quietly appreciative and the whole atmosphere at home is better. This DOESNT however mean that I allow him to walk all over me! If he is being unreasonable in my eyes, I tell him how I feel and then let it rest. I'm learning not to argue or rise to the bait so often.
You say that you are taking on more work. I don't know what your job is, but perhaps you could consider trying to work from home some of the time or changing careers. I know it's not easy, but it's not impossible. When I divorced my youngest child was only 2 (ie youngest of 4) and I had given up work. I re-trained as a beautician one day a week for 2 years and now have a small but successful business which I run from home. It fits in around my family committments.
Also, you said you live in rural Germany. If your partner isn't working and no-one is visiting him at home, would it be worth considering moving somewhere less rural and more convenient for you?
Anyway, the above are just ideas.
With specific problems re PD (eg sex life/meds) have you tried the PDS helpline? They can help answer questions and have several leaflets on different problems.
It's important that you try to take time out for yourself. Speak to your daughter and ask her to babysit for your younger child once or twice a week in return for you 'taxi service'. Get some time with your husband or just for you. Each year I do an evening class at our local college in a subject I like, it keeps my brain ticking and gives me 'time out' from thinking about all the issues at home.
Anyway, dont get too down and despondent. It's early days and you will learn to adjust in your own time, as will your partner. Dont be too hard on yourself and dont feel guilty for having 'selfish' thoughts - it's normal to feel that way at times.
We all go through rough patches and people on this forum will be happy to help you through. In my early postings I was very down but things do improve.
Im going to look up one of my early posts and copy it for you so you can see what I mean.
Keep your chin up and keep talking if it helps
Take care
Carrot

Hi again Germany
I found my old post, take a look at the replies and support on the Carer's thread.

Posted - 03 Dec 2008 18:27
I feel really bad for posting (as most of you seem to have much worse problems than me) but I need someone to talk to as I just feel like crying and HAVE to hold things together. OH has only been diagnosed for a few months and is not yet on meds but he is getting increasingly stressy and moody and I'm struggling to cope. Every other day he is in a stress about something. He cant seem to cope with any sort of stress at all (eg the boiler broke down and you'd think it was the end of the world. He was snapping at me because I couldn't remember exactly what the plumber had said). I feel like I am constantly treading on eggshells. He is also not coping with my teenage boys (from a previous marriage). If they so much as give him a sideways glance he assumes they are sneering at him - I feel he's being paranoid. He wants me to get my 15 yr old to move in with his dad after his GCSE's in June. He says he cant cope with the atmosphere in the house, but in my view he is the one creating it. I try to keep life as stress-free as possible for him. He is still working but usually home by 5. He then goes to the pub every night until about 7.30. I cook for the 4 kids (all mine admittedly aged 8, 10, 13 and 15) before he comes back and then cook again for us. I run them around to various activities and never ask him to help. I also do all the housework, work from home for 2 to 3 hours per day to fit in with school and have a job in a local hospital one afternoon per week. Despite what I do he is still stressy and moody a lot of the time. Is this PD or is this just him? He has definitely got worse over the last couple of years (we have been together for 6 and married for 2). I love him to bits but I don't know how to cope. I feel he is creating a rift between myself and my older children. We have an appointment with the neuro on the 18th and I'm hoping this will help. Maybe it's time to consider some meds eg Azilect?? Two days ago was the first time I saw his hand visibly shake and this seems to come on through stress but almost everything is stressing him out. He has also said he feels panicky in crowds. I don't know what to do. He is obviously very angry re diagnosis and I think feeling inadequate but I cant help thinking if he'd just calm down we could enjoy life more. I am trying to be as loving and understanding as possible but it's difficult when you are the target of most of his stress. Sorry if I sound selfish.
''''''''''
When I wrote that post I could hardly see for tears. Things are so much better now. If you can keep your 'compassionate head' on towards your partner, you'll get through.

Take care
Carrot

Thanks to everyone for all the helpful tips and encouragement, once again. I wish I had timne to respond to all of you!

My PD partner just stomped out the door after getting himself all worked up over nit-picky stuff AGAIN(someone left the heat on in the bathroom with the window open). He's just got too much time on his hands and is constantly brooding! I am learning to lie low and
"suck up" which is not my personality, but saves an all out blow-up from his side.

Carrot,

You are right --- we are still adjusting to being a family. Three years ago when I met him, my partner was limping a bit,napped on the couch after work, complained that his handwriting was getting worse as he got older... but he had a bum knee from playing soccer, and a job on his feet all day. It was the mild trembling,when we held hands, that unnerved me, and I jokingly said, "Are you cold or do you have Parkinson's?"

Something clicked in my head, which eventually led to an Internet search. Reading a symptoms lists, my blood literally ran cold. I talked my partner into seeing a doctor ASAP. So...we've been dealing with this together from the get go. I just never thought it would be so damned hard. We've dealt with doctors who have labeled him as a "hypochrondraic" to neighbors calling him "lazy". Very hurtful and ego-damaging for him.

I am self-employed, have a lot of driving and paperwork, but looking to change jobs as to have a more predictable working schedule and income. Since, his retirement, we are struggling financially. It's scary for both of us and difficult to see a light at the end of the tunnel- weRe assuming there is :) He had good insurance coverage, so we won't completely go under - for now :/

I could just scream and pack my bags right now. I don't even want to come home from work most days because I am afraid of the cranky mood he is in. As someone mentioned, "This is not the man I fell in love with, but still the man I love..." I really miss the happy-go-lucky, always-grinning guy I had 3 years ago :(

Hi Germany!
This is Dymafo from Belgium. My husband who is the PD sufferer is Welsh and I am Flemish.
Your original message could have been written by me a long time ago. Mind you, I only felt like that for a couple of months. My husband who was unemployed, unlike me, had a 2 year period when he only came out of bed in order to use the bathroom. As he is also a serious heart patient everyone including his GP thought he was nearing the end because he looked absolutely awful. He did nothing but sleep and although I managed to supply him with 3 meals a day (I was in the position where I could pop home at lunchtime) and he was doing absolutely nothing, he still lost weight. Since then I found out that many PD sufferers go into depression, even before they have been diagnosed.
When a neurologist suggested that my husband could have PD (he hadn't had the scan to confirm it then) he grew out of his depression and started leaving the house again. He went back to his old golf club, although he could hardly hit a ball, but he had lots of friends there. I talked him into telling his friends what was the matter with him, and so he did. The response was positive all round. I even heard him joking:"I'd rather have PD than Alzheimers. At least I can remember where I left my drink and who my friends are". Unfortunately he doesn't remember where he's left his drink because he can only contain ONE thought at anyone time. Luckily I'm now retired so I can collect his crockery that he leaves everywhere, from the attic to the back of the garden. He quite often walks around at home with a sandwich on a plate or a cup of coffee (although he only has a few sips out of every cup because if he deposits it out of his direct sight he forgets about it). I also go around every day cleaning up coffee stains because of his shaking, collecting his (eye)glasses (he has a dozen or so cheap ones), his wallet, his car keys etc. He also fills the house with paperwork which at times drives me crazy. However, it is not my husband's choice to do all this. He didn't ask for PD, and neither did I. One can plan all one likes but unfortunately life takes over. We have learned to make the best of it. So he cannot play golf now, but in the meantime he's the best golf marshall they've ever had at the golf club. He's also on the rules committee. He does so much for people and they're so happy with his help that we never have to buy wine or champagne because he is given at least a couple of bottles a week as a thank you.
One day my husband started writing a poem about his PD. When he showed it to some people they liked it because it was so to the point. Then some friends of ours had a silver wedding anniversary so my husband wrote another poem. From then on his poems just rolled on the computer screen. Maybe I should say "staggered on" because using a keyboard when one has the shakes is no mean fete.
In the meantime these poems have become a book which is due to be published in November of this year - proceeds to go to PD research in the country where the books are sold because it has now become an international thing.
So yes, I get angry at times, I can feel really down, I can feel hard done by because I also have a 90 year old mother and a handicapped son to take care of, but I have lovely friends who are prepared to listen to my moaning as I listen to them. But look what has been achieved by my sometimes bad-tempered husband and indirectly by me because I have helped him in any way I could. My husband is also my inspiration because I am a regular migraine sufferer (5 times a week is no exception) and my spine is not at all co-operative, but look what HE deals with. He knows he is not going to grow old because his heart, in spite of experimental open heart surgery and a series of by-passes, is badly damaged after 6 heart attacks. He is a real hero because he grabs each day with both hands and achieves things. I stand next to him and I enjoy the light that shines off him when it's 'switched on', and when it's not, well, I'm in the dark too. Life sucks, but it's also a bowl of cherries.

Hi dymafo,

Your latest posting actually moved me to tears, i felt it was straight from the heart and i must tell you that you and your husband are very lucky to have such a love and respect for each other that is obvious from your posting. Yes, there are worse things than PD as you know and have endured, and I applaud you. You are both obviously very loving and lucky people.

I hope i have worded this right so that you know how much your words moved me.

God Bless and thank you,


Tulip x

Germany
Hang in there
There are plenty of people here who are more than happy to listen to your fears and frustration. There are good days and bad. Respect your feelings and his.
Take care
Carrot

Germany, if you did not have those feelings, you would not be human. I too experienced fear, anger, resentment, and guilt for having all of those feelings when my husband was diagnosed. He was diagnosed a year before we got married, so PD has been part of our marriage from the beginning.
I believe a partner goes through all the same emotions that the person with PD does. After all, it changes your life too.
Yes, sometimes it's a struggle to find our sense of compassion when the frustration and fear is so overwhelming. It's scary to think we might have to be responsible for everything at some point. It's scary to wonder if we are strong enough to support ourselves and our partner as well.
Don't give up on your social life, your activities, your hobbies. They are a godsend. And don't feel guilty. We all have to cope however we can.
The very fact that you are posting here means you care, and don't let anyone suggest otherwise.
All the best to you.

Hi Germany
What an interesting post you started, i was glued to every reply, it came over loud and clear that this horrible illness effects the whole family not just us, but didnt you recieve some great replys , Cutiepie excelled again, shes one of many who are worth listening to, stick with the forum and we will all get through this together . A T B PARKYPETE