Hopefully, this won’t come across as a rant. I live in the US. I came to the UK forum because the UK appears to have better policies and procedures when it comes to Parkinson’s disease.
My husband was diagnosed with Parkinson’s disease in 2009 at age 63. His problems probably began prior to this but he had dismissed individual symptoms as related to normal causes (e.g. a long commute to work). I noticed he had quit swinging his left arm when walking and even fussed at him about this. My lack of sensitivity was, in the long run, probably a good thing because it started us measuring the host of problems he had developed. A visit to a neurologist led to a diagnosis of Parkinson’s disease and, indeed, in the intervening years we have seen degeneration similar to that described by others with Parkinson’s disease.
I am not satisfied by the diagnosis even though three neurologists have agreed with it. My concerns arise mainly from white lesions found on his MRI during the initial diagnosis in 2009 and a stroke/mini-stroke he had in 2012. Despite the 2009 MRI and the 2012 stroke and MRI, his neurologist insists that he suffers from Parkinson’s disease AND small vessel disease. (He has not had a DaTScan since few facilities in the US have experts certified for the test.) Additionally, he has not received additional testing for the stroke. It was transient with his left face and his voice giving way then recovering within the hour. Adding aspirin and a statin to his home pharmacy was all that was done before the incident was forgotten by his doctors.
Presently he is on Azilect and Sinemet. When I ask him if the Parkinson’s drugs help he can only answer “I think so”. His dosage of Sinemet is not high. Could this be the reason he cannot answer this question with more conviction?
The UK protocol for diagnosis appears to eliminate Parkinson’s disease if there is a history of stroke. I’m not sure what to call the response to levodopa he has given. If stroke is used to eliminate Parkinson’s disease, does that mean that Parkinson’s protects against stroke or does it just express a likelihood of one of two alternate diagnoses. (I am assuming that the latter also includes the unlikely event of both diagnoses which is precisely what his neurologist is saying.)
I know there is nothing that you can do but thanks for letting me express myself here. I am worried and frustrated.