Quote:
Originally Posted by Tcleme2
My wife has Parkinson’s disease that was diagnosed in May 2007 and now has twisting movements of severe dyskinesias. Taking carbidopa/levodapa (C/L )25/100 two tablets every 4 hours. Once a day taking 1mg Azilect and a 6mg Neupro patch.
Generally getting 2hours or less of good time after the C/L takes effect. After that having intense pain that lasts many of the times until the next C/L dosage takes effect. Extreme muscle contractions for 1 to 1.5 hours that feel crushing(happens in legs, abdomen, shoulders, neck, intestines – not all at the same time but many times in combination). Spending around 9 hours or more in this pain every 24 hours. Husband massages these various areas to get some temporary relief and walking around sometimes helps. Been to see neurologist and emergency room twice and no one gets the intensity of the twisting and pain. We have not been given anything for these painful times. We need help and need it now because we are unable to continue much longer.
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Sorry for your wife that she has to live in such a pain. My situation is very similar - only left side is affected, but the cramp and excruciating pain was so strong that I was just weeping.. Actually I am better since, this is what has helped:
1. Carbidopa/levodapa (C/L ) 25/100 every 2 hours.
2. Physiotherapy sessions that includes stretches, forced exercises, manual therapy, and acupuncture. Daily exercise program. Stationary bike for 20-30 min/ at least 4 x week.
3. Take my meds in a liquid form: Dissolve a tab of C/L in carbonated mineral water, this ensures the med kicks in in 10 - 15 min, instead of 1 hour.
4. Eat very small meals (no bigger than the size of the fist).
5. Drink 2 liter of liquids and maintain humidity in the house at 50, which is difficult during cold winter months with a furnace on.
6. Take high absorption liquid magnesium.
7. Sometimes when the med didn't kick in and I am in severe pain, I either stretch/tense the affected muscles, walk about, lay down on the floor or sit in the rocking chair, and try to relax the brain by listening to the Guided Meditation and following the breathing exercises. TheHonestGuys are the best out there, I have found them on YouTube. This meditation really helping me.
8. In addition I got an appointment to the Pain Management Specialist (MD).
Hope your wife gets better soon!
Best wishes,
Natalie