My mother has Parkinson’s but is non typical it seems. No rigidity or pain or freezing. She is nearly 97 and was diagnosed because of tremor around 8 years ago. Her main issues have been weakness, drooling, eyes closing, constipation, feeling “half dead”, trouble swallowing. All these things are massively helped or taken away by Sinemet.
I could write the whole story but in a nutshell I ended up having to change her dose timings and therefore amount of Sinemet as she was going into some kind of black hole where she felt extremely unwell. Pale, cold hands, feeling like she couldn’t breath, strange sensation in her chest, extreme weakness, holding her head, absolutely awful …this happens when her Sinemet runs out completely.
It turns out that she is transformed on the right dose at the right time. She has energy to eat, she feels normal, she can chat, she wants to live. Without it she doesn’t want to live and her life is a living hell.
Problem is her neurologist is adamant that she must not take more than 800mg Levodopa. I know many people are on a lot more and she needs 150mg every 2 and a half hours. I need to change neurologists urgently and find someone that will accept that although she doesn’t have rigidity etc and her Parkinson’s appears mild something in her brain NEEDS it.
Is anyone on more than 800mgs per day please? I would like to not only find evidence but neurologists. She lives in Surrey, UK.
PS Because of her age some other meds are not an option I believe.
I can see why your mum’s condition could be causing some confusion and frustration which is completely understandable. Usually I would advise our members to follow the advice of medical professionals, however, if you’ve observed a noticeable difference in your mum’s symptoms based on the dosage of Levodopa she’s currently on, I think you’d be right to get a second opinion as soon as possible. Until you’ve spoken to another neurologist or GP, I think the safest option for now, would be to follow the advice of her current neurologist - as hard as it may be.
I’m sure you’ll receive some helpful advice from our members based on their own experiences, however, if you’d like more information on this, please give our helpline a call on 0808 800 0303. One of our advisers can offer you more support on this and can arrange for a Parkinson’s nurse to contact you within 24 hours. We’re open from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected]
Yes my mum is on 950mg of sinemet a day.
Sinemet 250/25 x 3 and Sinemet 200/50CR x 1
When I asked, her neurologist said there is no upper limit.
It has been increasing. The key as you described is to put the right dosage at the right time. It comes by close monitoring of her situation and working with your doctor.
