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molly_m

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  1. molly_m

    Dystonia question

    Hello, I am wondering is there is a part of Dystonia/Parkinson's Disease where it is possible to stop functioning all together for a brief period of time. I know about freezing, and have heard of Dystonia storms, but what I experience is really just stopping moving, and staring, and although I'm totally conscious, I find it very hard to move or speak. Generally, people know I am having an episode, by the fact that I have suddenly become very quiet. I feel extremely weak, and unable to walk, or even lift my arms. Apparently my facial expression changes also. If I am standing, I feel like immediately laying down or sitting, because I become very unstable, and on occasion have fallen over. Generally, I have just enough warning to know to sit or lay down. If I don't, and someone has to help me, my foot does not pick up and it's as if my right side especially is not working at all. If I am sitting when it happens, I tend to slump to the right, and will just fall over over time. Generally they don't last very long, and sometimes my Dystonia symptoms (obvious ones, in my arm or hand) will kick in. I have also had my head turn chin to shoulder and sort of stick there when this happens. I sometimes feel very cold when I'm just laying there. I do recover within 10 mins to 45 mins - but feel weak and often headachy after. I usually have to sleep it off. Exertion will really bring this on. But I have had it happen for no reason that I can tell also. I was tested for seizures and although I did not have a true episode while hooked up, they did not see any signs of epilepsy. I've had MRIs, cat scans, etc. One neurologist felt it could be vascular (like a faint or a type of migraine). Again, not really tested for faints - my vision does get funny, but I'm not sure if that's because I am staring (not blinking), but it becomes a bit tunnel like/blurry/grey. I sometimes feel cold to the touch (my hands) when I have them. I am not sure why I can't speak when I have them (and that usually happens only with bad/more severe ones). It's as if I just can't get my mouth to function. Other times I have a problem getting the words out. I tend to feel better once I'm laying down (and I tend to recover more quickly if I lay rather than sit). Generally, my speech will come back within minutes if I lay down. My body tends to take a bit longer. It's definitely worse on my right side, however, all my symtoms are worse on my right side (where it all began). Three neurologists and my physician have said Dystonia - and some have suggested I have signs of Parkinson's (my mother has Parkinson's), but I have never understood the 'episodes' and what these could be. Any thoughts would be appreciated. Thank you
  2. Thank you Chelle I appreciate you taking the time to write. I wondered if it was freezing also, or if it is Dystonia (or low blood pressure, as some have suggested). I don't know enough about it and haven't had this explained to me. So hearing from others is helpful, thanks
  3. Hi there, I am new to this forum. Have just edited my question so that it reads a little easier. Parkinson's Disease is in my family. First began having problems a number of years ago - my right side just wasn't working - increasingly it has become slower than the left side, stiffer. Hand feels as if I am wearing a mitt. Zippers can be a challenge. My writing is tiny, and gets worse the more I write. My right arm stopped swinging altogether. I have to lift my foot when I walk. If I swim, I pull my leg behind me. Stiffness in my neck, my shoulder and hips. Sometimes, my foot turns in and my toes cramp. My hand cramps and my arm curls up. I am on Sinemet for Dystonia, which has helped somewhat. I then have times where I suddenly can't move. My vision and speech sometimes are also affected. Not sure if that is part of Dystonia, or something else Wondered if anyone else can relate. Thank you
  4. molly_m

    Parkinson's vs. Dopa Responsive Dystonia

    Hi, I have a question regarding this post which I find very interesting. My mother has Parkinsons Disease and I have recently been told I most likely have Dopa Responsive Dystonia. Our symptoms are very similar and especially our non-motor symptoms. I have a lot of fatigue and sleep issues, and although my Dystonia symptoms are very noticeable (and have responded very well to the Sinemet), my non-motor symptoms are almost as equally bothersome. On top of the Dystonia symptoms, my arm does not swing, I have a tremor in my pinkie, etc. My mother is the same. My question is - how likely is it that I have DRD and not Young Onset Parkinsons? It's confusing because I have a number of neurologists, and have had varying opinions. Thank you
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