Hi everyone, hoping to make some new friends.
I’m Steve, 62, PD diagnosis around 2 years ago but feel like I had it a long time before that.
Meds are currently x 3 Sinemet+ per day but either the dose or the meds are not right for me as benefit is minimal.
Struggle with mobility, gait, freezing,posture,tremor and a range of others. Does anyone else report problems getting dosages etc right, or do I simply need different or additional medication to help me feel better?
Thank you,
Steve
Hello @StevieH and welcome to the forum community.
I’m sorry to hear you are struggling with symptom control. Medication for Parkinson’s is a very individual thing and it can sometimes take time to get it right. If you feel your symptoms are not well controlled we would always suggest speaking to your health professional, consultant or parkinsons specialist nurse, if you have one.
I’m sure some of our helpful members will be along to chat and share their experiences soon.
In the meantime, there is information about medication available on our website
https://www.parkinsons.org.uk/information-and-support/parkinsons-drugs
Is a good place to start.
If you would like more direct support you can contact our free Helpline - our trained advisers can provide information and support on all aspects of life with Parkinson’s and, if needed can put you in touch with one of our trained parkinsons nurse advisers. The helpline is open Mon-Fri 9am-7pm and Sat 10am-2pm. You can contact us on 0808 800 0303 or [email protected]
I hope that this information is useful to you. Please do feel free to continue using the forum as a source of information and support.
Take care
Corinne
Forum moderation team
Hello and welcome nice to have you join us. I would absolutely agree with Corrine and suggest you go back to your medical team or PD nurse. Speaking personally getting the medication balance right can be a tricky business. I remember once when things were going a bit awry and my dosage was altered slightly it still didn’t seem quite right and through trial and error changed my regime to take most in the morning and less through the rest of the day which has held up well for quite a while. At the moment I am trying changing the times a bit as it feels like things are changing a bit. However I have also been through quite a challenging period and am conscious some of it may be stress related: which leads me on to another issue I sometimes have of trying to decide if it a real change (which you would think would be obvious but isn’t always that black and white) or something more temporary by being a bit out of sorts or something. I believe any issues or concerns relating to meds are best taken back to the medical team as it may only need a small tweak to make all the difference; even if more than that they can’t help if they don’t know. It is also a way of making sure you understand the purpose of any meds and do not have unrealistic expectations. I don’t know if this helps but I would encourage you to check things out with your team. Don’t lose heart, frustrating though it can be it can take time to get the balance right. Best wishes
Hi tot ,
Sorry to hear about your medication problem i was diagnosed in 2013 and have been on various dosages of co _beneldopa ever since, I’ve had disscusions with my parkinsons nurse and my consultant saying I don’t think the pills do me any good I was then refered to a specialist who confirmed it was Parkinson’s I had, the problems in have is balance I can fall 5-10 times on a good day, freezing and falling backwards is now my every day occurrence, but not everybody has the same symptoms so stick in there Steve I’m sure they are doing their best to get you sorted put m8
Thanks fella!
Hi Tot,
Thank you so much, really appreciate your welcoming and helpful reply/advice.
Stress is a huge factor yes, and I have also heard that certain individuals do not get the full benefit from levodopa medication for biological reasons.
I do though have an appointment with my neurology specialist in October so at that time I hope to get to the bottom of things.
Sincere thanks,
Steve
Thank you very much Corinne, that’s very helpful and apologies for my delayed reply.
I have an appointment in Oct with my neurology specialist so fingers crossed! I’ll keep you posted.
Very best wishes,
Steve
Hi @StevieH
That’s my pleasure i’m pleased you found it helpful.
Hopefully your appointment with the neurologist will provide further information.
Please do keep in touch and let us know how you get on.
Take care
Corinne
Forum moderation team
Thank you very much Corinne, will do.
Very best wishes,
Steve
Hello! I’m Alice and i’m here to help my grandpa (find out more about PD) and help someone.
