Balance

Hi my name is John and have had PD for 20 years. I do not suffer from on and off periods as my symptoms are the same throughout the day. I take 2x 25/100mg of Co-caroldopeldopa and 1x 12.5/50 four times a day. I also take 2 Amantadine a day. My medication has been increased gradually over the years however I take my last dose at 7pm when my symptoms are at their worst but my symptoms are the least apparent when I wake in the morning and continue so until I take my first dose at 10am. From then on my symptoms gradually get worse throughout the day. Does anyone else find this happens to them?

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Hi Culshpj, welcome to the forum. We hope you find it helpful and get some advice to help you with what you are experiencing.

With all medication based questions, we’d advise speaking to your GP or Parkinson’s nurse as they are in the best place to offer advice specific to you and can help you manage your symptoms.

Alternatively, you can call our free helpline on 0808 800 0303. We can put you in touch with one of our Parkinson’s nurses who can answer any questions you have.

Please take care and let us know if there is anything we can do to help.

Parkinson’s UK Moderation Team :blue_heart:

Hi Ben, Our doctors will not discuss problems re. Parkinsons meds and say we have to discuss it with the Consultant or Parkinsons nurse. When you phone the Parkinsons nurse the answer machine says there is a 3 week wait. But then I suppose we should be pleased we have Parkinsons nurse to call because they are so short staffed.
Hi Culshpj, I also find my husband is at his best 1st thing before he takes his meds. But after taking 1st med at 7pm he goes into a sleepy/dazy state his movement is slower but is fine, the same all day.

Hi Rach1, we’re really sorry to hear that and understand how frustrating that must be.

Please do call our helpline on 0808 800 0303. Our advisers can help you work out what to do to help with meds and signpost you to the best support to help you.

Hope this is useful. Please do let us know if there’s anything we can do.

Parkinson’s UK Moderation Team :blue_heart:

Thank you Ben, My husband has an appointment with the Parkinsons nurse in a couple of months so hopefully will get some answers.

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Hi there. My husband has the same experience as you. He’s been diagnosed 17 years and now takes 4 lots of co-careldopa during the day plus pramipexole and slow release Sinemet at night. He always feel at his best first thing before taking his first cocareldopa. Less stiff, his posture, movement and speech all much better and generally he’s more engaged with me at that time. After taking his meds he slowly starts to worsen during the day. Daytime sleepiness is a real issue plus freezing, drooling and general slowness of movement and focus on doing things. I know if I want him to remember something or I want to discuss something important I need to do it before he takes his first meds. It’s just weird. It makes you wonder what the meds are doing/not doing :thinking:

Hi suzyr, thank you for your comment and sharing your experience.

If you or your husband are concerned or have any questions about his medication, we’d recommend speaking to his GP or Parkinson’s nurse as they will be able to offer advice tailored to you both and answer any of your questions.

Alternatively, you can call our helpline on 0808 800 0303 and speak to one of our Parkinson’s nurses who can give you the advice you need.

We hope this helps, please do let us know if we can do anything.

Parkinson’s UK Moderation Team :blue_heart:

I think what a few of us are finding tricky is that the GP often won’t advise on Parkinson’s meds and the wait to speak with a nurse or consultant can be quite long. In the meantime, people are left unsure how to manage things day to day, especially when symptoms seem to get worse after starting medication rather than before. It’s helpful to hear from others who are having similar experiences, but it would be good to understand why this happens and whether it’s something common.