Thread: Not on meds
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Old 03-26-2011, 08:19 PM
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EmptyNest68 EmptyNest68 is offline
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Join Date: Dec 2006
Location: Aridzona; dx'd 04/2003 @ 35
Posts: 130
15 yr Member
EmptyNest68 EmptyNest68 is offline
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EmptyNest68's Avatar
 
Join Date: Dec 2006
Location: Aridzona; dx'd 04/2003 @ 35
Posts: 130
15 yr Member
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Symtoms were stiffness along my right side, instability, internal tremor, major fatigue, all which weren't normal for me. Docs tested me for MS, wilsons, inner ear, vitamin/mineral deficiency, all negative. They sent me to a movement disorder specialist who diagnosed me with young onset-Holly Shill with the Muhammad Ali Parkinsons institute. I had the cog wheeling and micrographia I remember..the symptoms started about a year before I even went to the doctor. I do remember my thumb being really stiff and burning, while my ring finger developed a tremor, which persists to this day. Those were my very first indicators of something strange. But it took a year to go see a doc.
Mirapex made me fall asleep everywhere and walked around in even a bigger fog: the clincher for me with that med was I hallucinated huge spiders and am DEATHLY afraid of them. Carbidopa levodopa was of course the best med for me. I was more fluid and clear cognition, no tremor. Along the way, I decided to go off of the meds to try and "control" the illness with diet and exercise and started jogging several times a week, cut out all processed sugar, most caffeine and carbohydrates (except those in vegetables), and "beefed" up on proteins and veges. It was pretty horrible for a time but after a couple of months the most bothersome was stiffness, a new slight shaking of my right arm and leg; but I found as long as I exercised and stretched, while they never go away, they don't impede too much. I saw an acquaintance recently who was diagnosed around the same time, about 15 years older than me, who's been on sinemet for most of that time, and she's already having the dyskinesia. I mean no offense, but that frightened me...SHE didn't, just the side effect.
My symptoms now are increased stiffness, fatigue, the shaking in my right arm and leg, imbalance, loss of smell, bladder probs, soft voice, inability to correctly convey my thoughts to my mouth, major cramping in limbs, throughout torso, can't open bags, bottles or jars; periodically my blood pressure drops really low and my breathing feels shallow. I still work and exercise, drink lots of water and eat well. I can jog or power walk better than just walking through the halls at work. I have to plan my days around work, as it's my primary energy-taker. Walking takes up the rest of my energy and physicality for the day, and then I am done.
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