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Does Anyone Have What I Call Downtime Between Medication Can’t Do Anything You Normally Do On A Daily Basis

A MyParkinsonsTeam Member asked a question 💭
Columbus, NJ
1 day ago
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A MyParkinsonsTeam Member

My wife (Faye) was diagnosed with Parkinson’s (PD) inearly 2020. Our doctor prescribed initial doses of Carbidopa/Levadopa(CL). She was told to take 3-4 C/L pills per day—so we assumed every 4 hours(e.g., 8 am, noon, 4 pm, etc.) For the first year, Faye was “normal”, i.e.,active, slept well, cognitively sharp, etc. Later, she began having bouts of extremefatigue, weakness in her legs, insomnia, and confusion. With research, Idiscovered that “off” times occur when the C/L stops working, and symptomsbegin. Like a car’s gas tank, a car will run on a little gas; but if the tankis dry, the engine stops. Faye needed the C/L about every 3 hours. Her first“tale tell” symptom was weakness in her lower legs. As time progressed, she nowneeds a dose every 2 hours. So now she takes 1 ½ tablets first thing in themorning. We set our phone alarms at intervals of 2 hours during the daytime.(Note: I set my phone as a backup. Works well, and she rarely misses taking herpills).
She also recently started AMANTADINE, which extendsthe C/L effectiveness. It is extremely important to take the meds in a timelyway for your individual situation. Know your first sign of “off time”. Lastly,we started a home exercise program 6 months ago—very helpful. We work on armand leg strength, balance, and walking. Started gradually, 3 times a week, andincrease reps each week. It works! She can now walk over 1.5 miles on a treadmill at a good pace.  I'd say without question: "Do what you can do, for as long as you can do it." Good luck! 

22 hours ago
A MyParkinsonsTeam Member

Yes, this is commonly referred to as "off" time in Parkinson's disease. It happens when medication, like levodopa, wears off, and symptoms return, making daily activities difficult. Managing "off" time can involve adjusting medication schedules, trying add-on treatments, or making lifestyle changes like keeping a regular Show Full Answer

Yes, this is commonly referred to as "off" time in Parkinson's disease. It happens when medication, like levodopa, wears off, and symptoms return, making daily activities difficult. Managing "off" time can involve adjusting medication schedules, trying add-on treatments, or making lifestyle changes like keeping a regular sleep schedule, timing meals, and staying active during "on" times. For more tips, visit url: https://www.MyParkinsonsTeam.com/resources/tips....

1 day ago

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