Hello everyone
I have posted before now I feel I am going through another stage, Its hard to explain but now feel things just don’t feel right I get very anxious and mood swings getting bad in the mornings and again early evening, dreams are getting worse and sometime feel worried about what I have been dreaming about although I know its just a dream, my speech is getting worse in the fact I know what I want to say but just don’t come out of my mouth right and I stutter with it, I go to bed very early have a couple of hours good sleep but that’s it just keep waking up with the dreams sometime they just carry on from where they left off, I could just go on and on, My wife is brill but I am old school don’t like to worry her and at this time she just lost her sister so she needs support ,
Just wondering are symptoms normal I have been diagnosed with PD for 4 years now and I am 74, I am on Madopar 3 times a day plus slow release at night, oh yes one more thing I have just gone down to working 3 days a week but seriously thinking of packing in altogether but if I do I am worried I just deteriorate more,
Thank you all for your support and advise from the start sure lot worse than me out there
Hello Peter … I was diagnosed 2 years ago. I have had similar experiences to you.
I think my extreme sleep issues were caused by my Parkinson’s medication. I now no longer take my evening dose. So just 7am & 1pm for me now.
As an experiment I did not take any Parkinson’s medication for 2 months & my sleep
issues got a lot better.
I did try lots of medication to help me sleep better and not have nightmares but nothing worked at all.
Best wishes
Steve2
Hi Steve
Thanks for that I have thought about not taking medication but was not sure about side affects if i stopped, I was going to bring that up with Parkinson nurse but have had 3 appointments in 11 months all cancelled so waiting for another bet that will be cancelled as well Thanks
Hello again … When I was advised to stop taking my Parkinson’s medication by the neurologist I saw privately, I first halved my dosage for 1 week then stopped altogether.
I did not notice much difference from being on meds and not being on meds, but I did find that my balance was better on meds than not. So taking my meds in the morning and afternoon and not taking the evening dose really works for me. It might not for other people.
You should certainly discuss the no medication option with your Parkinson’s medical team, before doing so. Maybe email or phone, getting an appointment is difficult.
Best wishes
Steve2
Hi Pererb1951,
Yes Steve is absolutely correct.
You definitely must discuss this with yoiur Neuro.
I Overview
Yes, Madopar (co-beneldopa) can cause sleep issues, including difficulty sleeping (insomnia) and excessive daytime sleepiness. These problems can increase with longer periods of levodopa therapy and are often a side effect of the medication’s dopaminergic action. If you experience sleep problems while taking Madopar, you should speak to your specialist or Parkinson’s nurse to review your medication.
How Madopar affects sleep
- Insomnia: Madopar can cause problems sleeping, leading to insomnia.
- Daytime Sleepiness: The levodopa in Madopar can also make you feel very sleepy, even during the day.
- Increased Risk with Longer Therapy: Sleep complaints tend to increase in frequency and severity with continued levodopa treatment.
What to do if you have sleep issues
- 1. Consult a Healthcare Professional:
Talk to your specialist or Parkinson’s nurse about the sleep issues you’re experiencing.
- 2. Medication Review:
They will review your medication to see if the Madopar or another medication is causing the problem.
- 3. Avoid Driving and Operating Machinery:
If Madopar makes you sleepy, you must not drive or operate machinery until you know how it affects you.
Hello.both
I am too having sleeping issues. I am trying to work out if i am over tierd, body temperature, either too cold or too hot or like Peter has said waking from dreaming. Very frustrating 
Hi peter, my husband is 68 and 9 years into treatment for idiopathic PD. Its so complex when symptoms change and worsen. Its hard to work out whether its disease, meds, or other factors that might be the cause, therefore its really important you discuss it with your parkinson’s contact, usually the nurses. I see your appointments are cancelled a lot which must be frustrating for you. I would persevere, keep contacting them and explain how your life is very difficult and you do need appropriate advice.
Im my hwp case, awful dreams are the current worse symptom. He describes them to me as, unable to distinguish if they are a dream or real. In his case the team are working on different drug trials to try and find which works best. Everyone’s different in how they respond to medication as steve has described. Our consultant has been telling him he must try each drug for at least 2weeks to see the response. In my hwp case this has proven to be true. Id say he is entering another stage, but i dont get worked up about stages, just getting the right advice and support is key.
Thank you for sharing so honestly about what you are going through. It sounds very challenging to experience these mood changes, sleep disturbances, and speech difficulties while also trying to support your wife at such a difficult time. Many people with Parkinson’s do experience symptoms like anxiety, vivid dreams, and speech changes as part of the condition or medication effects. It is important to talk to your specialist or Parkinson’s nurse about these symptoms as there are strategies and treatments that might help you feel better. Also, considering your work and how you feel is a big decision, and connecting with us for guidance and support might make that easier. Please remember you are not alone, and we are here to support you every step of the way.
Parkinson’s UK Moderation Team
Hello Peter, sorry to hear things aren’t as good as you’d like them to be at the moment. My hwp was diagnosed 13 years ago now. He has awful nights when sleep evades him for hours most nights. His neuro team prescribed him melatonin which does help. He too gets vivid dreams when he does sleep and hallucinations in the daytime. He takes madapor 4 times a day and slow release at night. It does seem a balancing act of getting enough drugs versus having too much.
My husband retired aged 74 because he felt his slowing mental capacities in that he needed time to articulate himself put him at a disadvantage in meetings. He was an electrical design consultant. He didn’t deteriorate when he retired but he kept very active using the gym 5 days out of 7 plus riding his bike. His speech has definitely deteriorated, lack of using it has contributed.
As others have said discuss options with your neuro team hopefully they can help with some medication juggling. Staying active certainly has been key to my husband.
Hl to all since 2010 when i found that i had PD i can count of only 12 nights when i have had a good nights sleep/ so I sleep when I am tried, eg have 10 mins nap. Just read about quite a few members having bad dreams, do you find that you are living your dream? if you wake up and then go back to sleep, do you carry on with the same dream? I am asking this because there is part of PD that causes these dreams , not the medication, my hubby first jumped out of bed and ran into the bed room wall. he has kicked me out of bed. he has had me by my neck and would not let go, we went to see our GP who had never heard of the things we told him , another GP told us to get single beds, then another told up to sleep in different rooms, it took 7 years to find out what it was. On one of my appointments I was seeing a professor Jill Barker. Remember I have PD not my husband she ask how i was sleeping and the subject went over to my hubby how he was sleeping at night. First thing she ask "“doe’s he swear in his dreams” now in all my married life I have never heard him swear , but he did when in a dream. Any way it seemed he had REM rapid eye movement What happens is when you sleep normal your mind freezers but if you have REM your mind carry’s on working, if you look on the PD web site it will explain in more detail, when you mention PD nurse’s if you don’t have one / or can not get to see one then phone PD UK for advice, I hoped That I helped you or other members and it is not 7 years to find out that you have REM
Hi Peter
I don’t very often come on site but when I read your post I thought you were talking about me.
For possibly the last few months something just hasn’t felt right, I can’t put a finger on what it is, I just do not feel well, I talk absolute gibberish I feel at times, my speech is quieter, faster hence no one understands me I mumble and most worrying of all I panic when I lose a word, the harder I try the less I can think.
I have a tendency to shout and boy do I shout loud it’s usually just F*** off I don’t know why, I don’t know who too, don’t always remember my dreams.
It’s all quite shitty really but Peter come on 74 and your still working on one hand good for you well done but then on the other go out and be with friends and family, relax and enjoy.
If it is another stage……not sure there is much we could do other than keep our cup half full and March on with your head up high lol
Hi newdidit, thank you for the comment and we’re glad you’re back on the forum, we hope it’s helpful for you.
We’re so sorry to hear you’re feeling this way and understand how frustrating and concerning it must be. We’d recommend speaking to your GP or Parkinson’s nurse about your speech and how you’re feeling. They will be able to give you advice tailored to you to hopefully help your situation.
Alternatively, you can call our free, confidential helpline on 0808 800 0303 and speak to one of our Parkinson’s nurses who will be happy to answer any of your questions.
We hope this helps you. Please reach out if there is anything we can do.
Take care,
Parkinson’s UK Moderation Team 
HI Peter from what you put in your message , please please get help , as it is me who has PD but my hubby used to do lots of things in his dreams that I have not mentioned. If you have a PD nurse explaine to her or call the PD help line. I know they say contact your GP but in my opinion there are a lot of GP s out there who know little about PD and REM. please post again or send me a pm so we know how you are coping
Sorry took a while, but thanks you Mary and everyone else for your comments they are helpful and it does give me a little reassurance, Things have moved on I have an appointment with the consultant early next month (November) and I have a check up with my doctor as well, (just like buses they all come at once) funny thing with my doc appointment is, its for a dementia check up even ask me to bring along my carer, I did call them and said wish someone had told me I had dementia but will sort that out when i see him, As for the rest dreams are really bad I am thinking I have woken up but or am I still dreaming even got up the other night and nearly went to wake my wife as not sure if i was dreaming or not (whooo that sound complicated to me god knows what you think ) as for work one day I go to work to tell them I am finishing next day I have changed my mind, I do ask my wife if she can see a change in me as I do not always see it, shakes are getting worse and just as i got used to shaving with my left hand that one has started shaking as well (might grow a bead) I still walk every day with my dog but feel I am fighting off the depression more and more with every day. anyway thanks again for your comments and just think positive and keep busy as much as you can Peter
Helllo Peterb1951
You, understandably, are wondering if you are entering another stage of your Parkinson’s, maybe you are but I, like many others living with this condition, take little notice of the five identified stages. They are not clear cut in my opinion and I often think, if you thought about it you would probably fit some bits from one stage and other bits from another. Stages may be useful to researcher and the like, they may even be important to some people with Parkinson’s but to me, trying to fit yourself into one of the stages is a waste of time and energy. It is far more productive to concentrate on what is actually happening to you.
It is usually worth getting a medication review as often it is this that is going out of kilter, but as others have said this should not be done without consultation with your medical team. As you are finding out, it is not always easy to get hold of someone in your medical team and all you can really do is persevere.
Just a word about giving up work, you obviously need to give this a lot of thought as it is a big decision. You need to work out the obvious issues, such as your financial position, but I also think you need to address the issue of what work means to you. By this I mean looking at how important it is to you. Some jobs carry a high status almost by default and as such the individual may be influenced by that and in effect it defines who he or she is - the obvious one being an airline pilot but other professions come with a ‘status label’ by which they define themselves. Those that fall into this category can find it difficult to give up work because if that’s gone what is left? For probably most of us, work is what we have to do keep the wheels of life turning, a means to an end. It is a bonus if you enjoy what you do but giving it up is no particular hardship, Then there are those for whom work is just something they have to do get by and will have no compunction when it comes to giving up work. If you give a bit of thought to how you feel about work and what you might do with your time if you did it msy help your decision making and what sort of planning you may need to do.
I gave up work three years post diagnosis when I had an unexpected opportunity to take voluntary redundancy, a decision I have never regretted. However for me, the biggest benefit was one I hadn’t considered before leaving work but quickly became apparent when I did and that managing my Parkinson’s actually ‘works better’ now I don’t work. Work carried with it many responsibilities, things that have to be done, that just don’t fit with the impact that Parkinson’s can have - you can’t take your medication on time because you’re in a meeting that has over run, you had a bad night and mid morning could quite easily fall asleep and it is a battle to stay awake, there may be some difficulties with what you can physically manage some days but as it’s part of your role you have to carry on etc. Without work in the mix, most days you can go with the flow - awake in the early hours do something useful or enjoyable, it you then find you nod off mid morning, so what etc.
Perhaps by changing how you think about what is happening to you, and maybe some of the things I have noted above will help you do this, your decision making may have a clarity that is currently missing.
I wish you well and hope you get some of the answers you hope for from the good advice you have been given by others and perhaps my own contribution will help a little. Do let us know how you are getting on.
Tot
“Diagnosed with Parkinson’s 4 years ago, 74 years old. Experiencing mood swings, anxiety, sleep disturbances, and speech difficulties lately. Here to share my journey, learn from others, and connect with those who understand the ups and downs of PD. Grateful for the support and advice from this community.”
Hi Peterb1951 just read your last post, don’t worry about your Dementia check as when I see my Dr or PD nurse they just do a Dementia check as normal routine. ps Not every time of cause.
Thank you once again for your replies, yes Tot you have given me lots to think about, and no doubt one day I will pack up work, I do feel its getting very close to doing it,
this forum is so good and just when you think you on your own you get a boast from other to let you know there are people out there just like me (and worse) that help you along, so I will keep reading and adding my comments and feelings sometime help loads just to put them down in words so thanks again,
just have to mention my emotions are all over the place at the moment so I do have a cry when reading all your answers and comments
Peter