Hi all, I posted recently about the terrible problem I've been having with my mother who goes into some sort of black hole if she doesn't get cinema it at the right time. I spent weeks titrating her dose up with and timing it until I stopped her crashing and she was so much better and happier... more so than she had been in over a year. Her neurologist has other ideas though and is very angry at what I've done. He immediately reduced her dose by 3 x 125cr per day. I wasn't actually at that appointment as I was away and she was taken by my niece who was obviously distressed by the meeting. She has managed to survive the nearly 2 weeks until we see him again on Tuesday but there are periods in there that she is weaker than she should be and I know she would be better with another 62.5mg in those periods.
I think he is going to reduce the dose again on Tuesday and honestly it is going to take my mother apart. Because she doesn't have normal Parkinson's symptoms he is adamant that her Parkinson's is so mild that she cannot possibly need this high dose. I don't know what goes on in her brain but clearly she needs it and is well and happy on it as opposed to weak and eyes closing etc.
I am so distressed by the whole situation and really don't know how to best protect my mother from a neurologist arrogance.
I have just been made aware of another practitioner, who is apparently really nice, specialises in the elderly and takes his time that I intend to get a referral to but I'm concerned about how long it might take and actually what he might think as she doesn't actually have typical Parkinson symptoms.
Even my own family now dont believe all my monitoring and titrating was right. It took me weeks to get it right but noone is interested. The neurologist must know best.
Any thoughts anyone ?