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Old 06-17-2010, 04:01 AM
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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
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This is a "typical" that I was working on for my doc with some comments added:

“A typical episode will last from one to four hours. It comes on in a time period of fifteen minutes or so from the first hint to incapacitation. From there it is a slow climb back to an on state over the remainder of the period.

The first signs are a loss of fluidity in my movement. This quickly (say five minutes) progresses to freezing where each step is a struggle and exhausting. At times I have been forced to lie in the floor and wait it out. At others I have been forced to crawl in public to a safer location. Falling is a real risk.

Subjectively, cognition slows and I feel like I am at the back of a cave seeing the daylight some distance away. Brain fog. Physically, even typing is near impossible. My legs feel as though there is no life force in them and often my arms do too. Conversation is almost physically painful.

While the wearing off of meds seems to be a trigger, taking them once it has begun has no effect. Even triple dosing is useless once the cascade starts. However, taking them well before it begins seems to head it off.

At about a third of the way through, I sense a shift, usually in the form of transient energy waves in my legs. Very fleeting at first, they become more pronounced as the second third of the process passes. Toward that endpoint, hesitant stretching helps.


Then the fun begins. Still unable to walk, I have to urinate. I mean REALLY have to urinate. I struggle to the bathroom sometimes, use a urinal others, and occasionally have an accident. Then I relax for five minutes and repeat the whole process. Three to six times is typical. The urine is copious and almost clear.

Each trip is a little easier and the brain fog dissipates. Finally at the end, intense stretching speeds the turnabout. Extra meds taken earlier now appear and take effect.

This has gone on for ten years and has increased in frequency and intensity but not in nature. It is not unusual for me to have three such episodes on a given day.”



I've been thinking about what might serve as a flag to indicate that this should be suspected. So far, I suggest:
1- A familiar worsening of symptoms including gait problems that does not respond to meds but resolves with time.
2- A weakness of the muscles of the legs and arms when at rest and rigidity when forced to respond (i.e. by walking).
3- A predictable pattern in time (i.e. every day around lunch) or circumstance (i.e. sudden stress).
4- Sensitivity to blood sugar fluctuations.
5- Polyuria.
6. Sensitivity to declining levels of PD medications that is not countered by additional medication.
__________________
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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