I Was diagnosed with PD 5 years ago at age 72. I started out with Azilect, 1m per day and gradually added sinemet. I functioned very well (except for sleep-another story). I was able to work until a year ago. I changed to Rytary about a year ago and have had very even control. (10 per day of 36.25/145.) I have arrived recently in the "land of dyskinesia". I have had periods of uncontrollable movements of head, jaws, teeth, and upper body that I could only describe as a seizure in slow motion.
I understand that the meds need to be titrated down slowly. So far in 3 wks we have stopped the 1 Azilect per day with no changes in the movement.
I guess my question would be - at what rate and how long did it take to cut down the dosage to get some relief?
I'm aware after that, choices have to do with a pump or DBS.
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lind-ane
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Hi Lind-ane. As you are aware, the dyskinesia is the result of too much levodopa medication. Cutting out the Azilect will not change the dyskinesia because it is not a levodopa medication. You should rather go back onto that and cut down on the levodopa as soon as possible. You may not be aware of the fact that no Pd medication is able to slow down the progression of Pd so whether you take it or not your Pd is still progressing at the same pace.
Having said that, you may not be aware that the only action that you can take to slow down the progression of your Pd is FAST WALKING! Your reaction to this is probably, 'How do you think I am going to be able to do fast walking? Well, we are all able to walk, and we should all be doing walking for our general health. If you were to start walking as fast as YOU CAN even for ony 10 minutes every second day and increase that time by 5 minutes every 2nd week, within 6 months you will be walking for one whole hour. Just think of that!
Go to my website - reverseparkinsons.net and see more about this. I am now 81 years old and have had Pd symptoms for 53 years. I now live a 'normal' life, medication-free and walk 21 kilometres every week at 7 kilometres per hour.
My understandini is that Dickensian is associated with levels of levodopa.. The Michael J Fox Group has an ongong "Third Thursday Webinar Series. Last year one had the topic of dyskinesia was excellent. Archieve is available in Michael J Fox website. Recommending contacting Presenter.
I know how you feel as I too struggle with dyskinesia. I am currently cutting out Azilect also to see if that helps after having reduced it to 1/2 tablet - I am on Stalevo and Myrapex. There is always a trade off between periods of dyskinesia and length of off times so I'm keeping a record of my off times as well as duration and strength of dyskinesia. Concerning John Pepper's point about Azilect not being L-Dopa, my understanding is that it increases the amount of L-Dopa that reaches the brain so I figure reducing or cutting it out should have an effect on dyskinesias. Unfortunately, I don't have any conclusion yet to report. It appears there are so many factors that are at play aside from just the meds. One thing I do know for certain is that exercise reduces the dyskinesia and sitting still (especially working on the computer ) makes it worse. I don't dare miss my morning workout on my stationary bike as a that really helps prevent or reduce the dyskinesia during the day. Hope this helps you a little.
Thank you friends for your responses. As usual, with this relentlessly progressive disease, I have to go through the " surely there is some mistake" phase before I can work at learning more and finding helps in living with it as it changes.
In the magnesium study MgSO4 was injected and is not obviously repeatable for the general public. I prefer 2 forms of magnesium, magnesium threonate, because it is 15% better absorbed than other forms of magnesium and it enhances memory. And magnesium chloride, a liquid. M. chloride can be sprayed on the skin bypassing the stomach hence it is absorbed at a cellular level. I do not have dyskinesia but take both of these because they are good therapies for PD.
M. threonate dementia study:
The following article is by Dr. Sircus, a magnesium chloride advocate, about its use and PD: drsircus.com/medicine/parki...
Reducing Dyskinesia in Parkinson's Disease With Omega-3 Fatty Acids (RLID-PD)
The study was completed in June and the participants took 2,000 mg (2 grams) a day of DHA omega 3.
I take 2,000 mg/day of distilled salmon oil and about 5-600 mg combined of threonate and M. chloride. If you are on a blood thinner like warfarin (Coumadin) forget about taking omega 3s - it too thins the blood.
"The Linus Pauling Institute supports the latest RDA for magnesium intake (400-420 mg/day for men and 310-320 mg/day for women)." From their website.
Alternative (natural) practitioners recommend between 500-900 mg/day depending on the person. The limitation on taking magnesium is if you suffer from low blood pressure, Myasthemia gravis or kidney disease. If you have any of the three, skip magnesium.
Lithium is a known therapy for bipolar disease and there is some evidence that low-dose lithium can help to relieve dyskinesia in PD:
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