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Old 06-23-2008, 02:48 PM
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reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
Default Advanced symptoms?

On/offs. Freezing. Dyskenisias extraordinerre. Often referred to as signs of advanced PD, but I'm not so sure. How many of us have them? Keith (aka kk13) and I for sure. Anyone else?

If not, then the question of why not becomes very interesting.

On/offs are when the meds seem to just stop working. I can take double and triple doses and nothing happens. Zero. The only thing that offers relief is the passage of time. Usually two to four hours, in my case. Try to walk and freezing clamps down. Since this is paired with a strong urge to urinate things get rough. In fact, that rip to the john under those conditions is the biggest challenge that PD poses for me. But the odd thing is that if I don't try to walk and crawl instead, I move right along.

Oddity number 1- There is a great lessening of symptoms when on all fours or just in the floor in general.

Oddity number 2 - meds don't work. At all.

Oddity number 3 - time passes and they work again.

ON 4 - the bladder works overtime.

This occurs under at least three conditions, all very predictable. If I get acutely stressed, if it is late evenng and my meds are wearing off, and if I eat certain things.

ON 5 - Stress starts it. If I act in time to escape the stress, it reverses sometimes with no further meds.

ON 6 - Late evening, yes. But I am not 100% sure that it is the meds wearing off. I suspect a circadian rhythm effect. If I go on to bed and wake up at, say 4:00 AM, I'm in much the same condition. But if I wake up at 5:00 AM, there is a world of difference.

ON 7 - Anything with MSG in its many forms does it every time. I can feel it coming and know that I have fifteen minutes max to get to a safe place for the next four hours. MSG locks on to the NMDA receptors. Those are the ones that J.S. Hong is trying to protect with the dex cough syrup and they are the ones that glutamate lights a fire under.

So, Keith or anyne else, any parallels?
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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