Hi there. I’m new to the forum. My 49yr old husband was officially diagnosed with PD in March this year but we didn’t get to see a consultant until August.
He was started on Siminet on a starter dose for 2 weeks then doubled the dose thereafter. We are 10 weeks on and he has had absolutely no improvement in symptoms. Stiff and tight shoulder, wrist and hand, increasing hand tremor are the most challenging symptoms. He’s having difficulty sleeping on that shoulder and playing golf.
I’d been hoping that the Siminet would have at least shown even a small improvement on his symptoms.
The Parkinson’s nurse didn’t increase or change his medication and said she’d make an appointment for him to see his consultant around Feb/March next year. I feel waiting another 4-5 months is time wasted if the drugs aren’t working and would prefer a tweak now with a view to seeing improvement by then. Am I expecting too much at this stage?
Hi Ljduk,
Please accept our warmest welcome to the forum. We’re sure you’ll grow to appreciate the wonderful and supportive community here as they pop in to share their experience and advice, but we would like to be sure you’re aware of our website, which contains not just the latest research and Parkinson’s news, but loads of helpful articles and even archived forum discussions. This page may be a good starting point. We also have a team of friendly and supportive advisers at our helpline at 0808 800 0303. This is a free and confidential line, and our lovely team there can help with just about every question you may have, so please take advantage and give them a call.
We hope this will be of some value, and we welcome you and your husband happily to our forum family,
Jason
Moderation Team
Hi, I was diagnosed in early 2017 (aged 48). I started Sinemet 12.5/50 x 3 a day in March 2020 (just Rasagiline prior to this). I found Sinemet really useful (mainly for tremor). I have just increased to Sinemet plus (50/100) x 3 due to some wearing off. I have had immediate relief (some nausea). I continue life pretty much as before (work, drive, exercise etc.). In fact I haven’t told many people about my diagnosis. This is personal choice obviously. One thing that is so evident during this dreaded journey is that everyone is different. Good luck!
Thank you for the reply. My husband started on the same dose as you 3 x daily for 2 weeks and has now been on 25/100 3 x daily but as I said not a single improvement.
I’m really pleased you are feeling improvement and continuing as usual. It really is a personal journey. I was pleasantly surprised that my husband told all his immediate family and close friends right from the start. I think it was his way of acknowledging the diagnosis and learning to accept it.
I hope you have good support around you and wish you continued good health for the foreseeable
Thanks Jason. I’ve been round your website with a fine toothed comb I have also taken a couple of the modules from your education hub and improved my knowledge. I am a Sports Therapist and medical acupuncturist, so I was keen to add to my personal and clinical knowledge of the condition to help my husband along the way and it was great to do these as CPD.
I’ve emailed his consultant to ask whether he might tweak his meds with a view to seeing improvement.
Hi, with sinemet and all parky drugs, it takes time to get into your system, it’s not a quick fix.
A few things you should know that will help.
Take on a empty stomach, sinemet is absorbed through the gut not the blood stream
Don’t get constipated, sinemet can’t work as efficiently
Don’t eat a big protein meal same time as taking sinemet
Take meds same time every day, its important as your body will function better, there’s no up and down,
Get hubbie a hobby jigsaw, keeping mind active takes focus off tremor
Try not to let him get stressed or anxious, this doesn’t help tremor, don’t let him see you get stressed, and upset as that doesnt help him,
Relax
Take each day as it comes
Your be OK, you can still have a life, just different, parky there is no quick fix.
Hi
I haven’t been on the forum for a while. Jason you make it sound like a holy order they have join it sucks. Have you tried RASAGILINE it feels like I’m wearing a cement suit if I stop taking them. When you’re 1st diagnosed all you think about day and night is Parkinsons 15yr in and I forget about it most of the time. I am trying to learn another language not putting in time with a jagsaw and I intend to visit Italy again soon so hang on in there G.
I have also taken a couple of the modules from your education hub and improved my knowledge. I am a Sports Therapist and medical acupuncturist, so I was keen to add to my personal and clinical knowledge of the condition to help my husband along the way and it was great to do these as CPD.