I've not yet officially been diagnosed with Parkinson's because I've never had the typical symptom of tremor. During my first visits to my neurologists they did the usual "quick" tests to see if I fell over when they pushed me, asked me to walk 10 metres and back as they watched me, tried to find restricted movement in my arms, wrists and legs, etc. In the beginning they said they saw nothing even though I knew there were times when all the signs and symptoms of Parkinson's were beginning to become a part of my everyday life to some degree. I do have balance problems, vision problems, cognitive problems, stiff legs, muscle rigidity, stiff neck, pain, problems with sleep, constipation and so on, and so on but, in the past, they've never been severe enough for the neurolgists to see them while I'm in their office. This all started about 6 - 7 years ago and all of these symptoms are incredibly difficult to deal with now. My twin brother has Parkinson's so did my dad to a lesser degree. So, I know the signs well enough. But because I don't have tremor, all the neurologists I've seen have said either NOT Parkinson's or MAYBE! I've had Datscans which have been interpreted as NOT Parkinson's but I know that around 10% of PWP have negative scans. One of my neurologists says this comes under the context of SWEDD (scans without evidence of dopamine depletion). Either way, I'm not taking any meds but I certainly have a good idea of what intermittent low levels of dopamine do to my brain and body. Cognitively, my brain slows down to a stop at times and I feel like I'm in a stage of dementia. I've seen this endless times in my brother when he's in one of his "off" moments. For me, without any meds, it's very worrying and I'm increasingly worried about Lewy Body Dementia.
Or . . . is this all a part of the anxiety some people experience with Parkinson's.
I know that the following happens every morning. I'm in bed feeling OK (or just tired if I've had a bad night) but I almost always think I'm going to have a decent start to the day. So I get out of bed, get dressed, start to prepare breakfast (everything brain and body- wise working fine) spend about half-an-hour feeling normal before I slowly but surely feel myself mentally and physically "crashing". I begin to lose the ability to think clearly, co-ordination disappears, have trouble speaking co-herently, vision deteriorates (espesially once I've put on my glasses), and I really do feel that any dopamine that's in my brain is being drained away and I can't stop it. If I was on meds, I'm convinced this would be an "off" period. The problem is that this feeling is now with me all day long. Anything I do intellectually and physically knocks me out. Cooking, driving, working in the garden, watching TV, reading, everything I do for the rest of the day I'm doing in a state of what feels to me like dementia. The only time I feel anything like normal is during that first half hour or so just after I've woken up but am still lying in bed. It seems, sometimes, that the physical act of moving around in those first minutes and using my brain to perform mentally is enough to fry my brain and my body.
I'd like to ask if any of you, either now or before you started taking Parkinson's meds had the same symptoms. My neurologists say this could be stress or anxiety and have tried many times in the past to put me on anti-anxiety or anti-depressant meds. But is this more likely to be a Parkinson's issue? Perhaps a Lewy Body issue?
About a year ago, my brother told me he was having the same early-morning issues. This was a long time after I began to have them. He spoke to his Parkinson's nurse who told him to take his meds an hour before getting out of bed and before long, the symptoms pretty much went away.
Any advice would be really appreciated. Thanks.