Hello, my mum is recently diagnosed and has been put on a trial of Sinemet, increased to “TDS”. I am really alarmed at the acute change since this has started. Very rapid cognitive decline, panic attacks, anxiety, mania and constant shivering. My mum currently lives alone in a different part of the country to me. I am very worried that she may have been given too high a dosage (mum is very very slight and short with low BMI) and/or that she is not taking the right amounts at the right time. The more muddled she is as a result of the meds, means even more concern that she might be under or overdosing. I know that stopping meds is not recommended/needs clinical management - but I am honestly terrified of what is happening at the moment.
Ive contacted GP and her consultant as a matter of urgency to follow up with me. But the GP’s level of support is not the best (it took huge effort to get to this diagnosis stage with them). The prescription has just been sent out to her but with no follow up from GP to check how its going etc.
Should mum have a Parkinson’s nurse assigned and/or a carer visiting to manage the dosage? And can I call a nurse advisor for support please. Thank you for any advice
Hi and welcome to our forum @VanessaTravers. This sounds very worrying and you must be extremely concerned, especially not being near your mum right now. I do hope she has support from other family and friends. You’re quite right you should never stop or change medication without talking to your doctor. I’m sure that our members will be sharing their own thoughts with you about this very soon.
I would encourage you to persevere with her GP and consultant to follow up and get the answers you need. You can also ask them about a Parkinson’s nurse.
You can call our Helpline and local advisers for support on 0808 800 0303 at any time. I know they will do everything they can to help set your mind at ease.
Best wishes,
Janice
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