Quote:
Originally Posted by joanne721
Hello All,
I am fairly new to this forum and would welcome any input on tremor. I was diagnosed with PD in February 2014 when I first started noticing a slight tremor in my thumbs. Went through the regular tests, MRI etc. Saw three neurologists, two were MDSs. Of course, looking back, I have had other minor symptoms for several years (coordination trouble: typing and brushing teeth, messy sometimes small handwriting; stiff arms when I walk but not all the time, a bit of trouble with my gait -- I have to think about walking smoothly).
But tremor is the big one and over the last eight months it has gotten worse. It's embarrassing to eat in restaurants now, for instance, and it has also spread to my left leg. I shake the whole table. I'm a graphic designer and need to spend hours on the computer. It's getting more and more difficult to do my work.
I have tried a number of things to get it under control (Sinemet, Requip, Cannabis CBD tincture, increasing my exercise, CoQ10, Vitamin B12, Aloe Vera juice, Mucuna Pruriens powder, probiotic diet) but nothing seems to lessen the tremor.
That's not exactly true. It is worse in the morning, or when I'm stressed, and after exercise. If I lie on the couch in the evening or late afternoon and watch a movie or something it almost goes away. It is also lessened by walking around, pacing, etc -- but I can't be moving all the time or spend my life lying on the sofa!
Since increasing my focus on a healthier lifestyle of diet and exercise other symptoms like my stiff arms and gait have gotten better and sometimes my writing is almost normal (still trouble brushing teeth so bought an electric tooth brush) -- but the tremor just won't quit.
One neurologist told me tremor is difficult to treat and has a mind of its own but I am not ready to throw in the towel. I also read somewhere that there is something called "Tremor predominant Parkinson's" but I don't know much more about that.
Can any of you suffering from tremor please post any advice or wisdom you may have to share? Details are appreciated.
Joanne
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Joanne, sorry to hear that you are having so much difficulty with your tremor. Tremor Dominant PD is one of the more common phenotypes and is typically contrasted with the axial symptoms of postural instability and gait disability (PIGD subtype). Keeping in mind that PD is extremely heterogeneous in general with most cases being different, there are some common distinctions between tremor and PIGD dominant subtypes.
First, tremor does not progress at the same rate as bradykinesia, rigidity, gait and balance. There are some indications that patients with tremor-dominant PD have a relatively slower disease progression (the good news).
Second, tremor severity does not correlate with other motor symptoms. So, your other symptoms may stay mild, and be easily controlled, while your tremor becomes more severe (the bad news).
Finally, tremor does not respond as well to dopaminergic treatments as other PD symptoms.
Of course as I said, these are generalities. However, my experience anecdotally with many PWP, including myself, is they are pretty accurate. The absolute worst thing, by far, for tremor is stress. Related to that would be any situation that causes your adrenaline flow to increase. That's why you find it worse when you exercise. However, that should correct soon after exercise and typically improve for a short period. You'll need to actively find ways to combat the tremor. Since it's a resting tremor, I find that just moving my hand, or opening and closing it, tends to stop the tremor. If you can, try to close your eyes, take deep breaths, and focus on something like you would when meditating (that works well for me). I know you tried it, but I've heard many people anecdotally saying that cannabis works (there was a research study that came out yesterday to that effect). With regard to all of the other supplements, they may help (or may not) help with slowing long term progression, but I've not found any that have helped symptomatically with tremor.
My last thought is, have you tried Amantadine? It does help me, albeit mildly, with my tremor. I've had no side effects from it, either.
Gary