In less than a week, I will have a test that could change everything and nothing at the same time. Ever since my London appointment, life has been off kilter and as much as I try to push it to one side and forget it, it niggles. I went there with the expectation of discussing yellow ones, genetics and DBS but I came out with my diagnosis thrown up in the air with talk of young onset Parkinson’s Disease and a bit of functional neurological disorder (courtesy of a tremor induced by the fear of having to talk to another neuro and looming DBS talk – more of that another day :/). It feels like all the balls have been thrown up in the air and you are waiting to catch one but you are unsure which and when it will fall. It puts you on edge.It sends you straight back into limboland. Having spent years there previously, it was a place I did not want to revisit. Having a diagnosis – a name – helps so much in grounding the mind. You can accept it, adapt and move forward to live your unique life. Being in limbo makes you question every little quirk and symptom. Is it DRD, PD or nothing at all but a glitch in the system. You begin to not to trust yourself. It drives you crazy after a while because no matter how you distract yourself, it doesn’t take much for the uncertainties to creep in. Evolution really needs to design a mute button for thinking!
A DAT scan will rule out YOPD, leaving DRD and decisions of whether to pursue more confirmation with lumber puncture and phenylanine loading test will be have to be made.These require coming off my magic Sinemet which is a horrendous and frightening prospect. Being older than usual with progressing symptoms I don’t fit the classic DRD criteria but with the dystonia and lack of tremor I don’t fit YOPD either. In my heart, I feel it is DRD with a twist, antagonized by vasculitis because of the diurnal fluctuations and improvement with sleep I experience. The doubts creep in though with freezing episodes, micrographia and voice issues among other things. There is also an added twist in the tale with research coming out that GCH1 DRD causing gene is also linked with PD so you can be really unlucky and have both.
Ultimately, the test could alter everything and nothing. If it is PD, I will carry on taking yellows and carry on living in my own wobbly way with the bonus of at least people have heard of PD. They may not realise it isn’t just an old fogey disease but they have heard of it. This forms a platform for awareness campaigns like #1in20parkinsons. PD support groups are also available in most areas. If it is DRD, my wobbly life continues with a few more decisions to make with the bonus of may be by symptoms will reach a plateau.
Only time will tell which way my journey will go next ….
#DRD # parkinsons awareness #onein20parkinsons #dystonia