So i was DX with PD in 2017. But i think i have had it since 2013,i am on C/L both CR and IR(25/100). I take 1/2 IR at 530a then 1 pill of the CR at 7a 1/2 at 1030a IR then 1 pill CR at 12p then last does at 330p of IR and 1 pill of CR at 5p. I know it is a wonky way of taking my meds but it works for me.Is this a lot of medication for being dx only a couple years ago and is there anything wrong with my choice to take it the way i have listed it? my fear is that if i ever went to Hospital they would never give it to me this way. I have dyskenesia and this is why i have had to do my pills this way.Is it bad for me to do it this way? TY for any advice
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RS313
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Well, meds provide symptom relief only so it is very much your choice together with your doctor. Ldopa is a little tricky to predict as its relief effect can vary so much so you are best placed to manage dosage. I was dx back in 2013 and my total daily Ldopa dose is around 300mg of CR and 200mg of IR. No dyskinesia but sometimes lots of tremor! I exercise intensively and am careful about nutrition which is just as important to quality of life as meds!
I was diagnosed in February, 2018. Please remember that we are all snowflakes... everyone is different...
For me, I have been on medication since August, 2018 and I take 2 ea. 25/100 C/L 4 times a day (8 tablets total). I also drink some mucuna in the morning and take a slew of supplements.
If you ever end up going to the hospital maybe a spouse/friend can be your designated advocate if they know exactly how you have to take your medication? It is my opinion that it is advantageous to have an advocate with us anyway. Hospital staff is so overwhelmed these days that having someone who can help/oversee is a blessing.
You are remarkably composed and accepting for a person that was diagnosed so recently. What is your magic?
Your advice is very good but I am not sure if that will work in the western world. I have tried going to a couple of Ayurvedic treatment facilities in India and they have declined to accept me as a solo traveler/patient.
I have been told that almost every hospital or treatment facility in India requires a companion 24 hours. That is insane! Not sure if other countries require that as well.
I have had a couple of surgeries in the USA back when I was in my late 20’s and went through the whole process solo. Now I can’t go without my wife or son and when the doctors see them, they say, “so nice of you to come with!”
I think you are talking to me? My “magic” is my faith that God has me on this path for a reason (even if I don’t like it) and that my suffering will benefit others in some way. Without a PD diagnosis I would never have the opportunity to know the fantastic (albeit suffering) folks on this forum. They are my blessing...each and every one. 💕
RS313 - my thoughts exactly for a different reason. What happens if one of the B 1 enthusiasts here were to land in the hospital unexpectedly? Worse still, what do you do when you take a gazillion supplements?
I was in the hospital ER recently and I had gone straight there from the airport with a foot infection that I had contracted when I was abroad. I am on Rytary and not one nurse or doctor knew what it was. Luckily, I had my Rytary with me and the nurse said “ go ahead and take it while I look the other way!” She then warned me that I was about to be taken to intake for hospitalization and that I could not take my Rytary with me according to protocol. I told her that I would need it for my next dose.
She was astonished. “I thought that you just had your dose for the day. I don’t expect you to be here for more than a day according to the doctors. You won’t need it!” Clearly, the concept of repeated doses throughout the day was foreign to her and she was an RN! That led me to ponder, are we the only ones taking multiple doses per day for our condition? Or had this RN never crossed paths with a Parkinson’s patient?
In the hospital, I was incredulous to discover that nobody knew what it was either. They had to ask the hospital pharmacist to come in and verify and hopefully educate them. Bottom line, I got my next dose after 24 hours. During that time I was in the MRI machine and requested to keep totally still. I was ok. Turns out that they had given me Lorazepam.
You absolutely need to have an informed advocate helping you should you become hospitalized. My pwp was in intensive care for 6 days and I had to have my pwp neurologist, from another town, call and demand his meds be given. When the sublingual med wasn't one they were familiar with they decided to give another med that had caused my pwp hallucinations in the past. We were lucky I caught it. Then I had to press the staff to locate the desired med at a sister hospital in another town. Due to the critical condition my pwp was he could not have advocated for himself.
I have a relative who is up to 4 C/L 25/100 4x a day. This means 1600 mg of L, daily, plus other meds she takes. It works for her; she was diagnosed with P about 10 years ago and is still mobile, drive herself, etc. at age 77. No cognition issues or balance problems, just tremors.
I was once told by the 4th or 5th resident I trained at Mayo in Rochester MN. "after 14 yrs, you've had PD since before I went into med school." "If it works for you, do it!" "you are your own neurologist"
Myself diagnosed June 2016 started with sinemet 100mg 3X daily, currently its 250mg 5X daily, for only three years in they say this is a very high dose. Also tak requip 1mg 3x daily.
You know, any amount is subject to the specific patient, truly the case. To repeat Casey, if it works all is fine. Every case is unique, go with what is working for you.
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I have dyskenesia and this is why i have had to do my pills this way.Is it bad for me to do it this way? TY for any advice
YES I am still on Coconut Oil, aka CO
I am not convinced that I have PD. Could anyone tell me if they have had any of these experiences?
Parkinson's and Mitohormesis - presentation by Dr. Matthew CL Phillips
Ok, so I am a PWP. The neurologist said \"you have Parkinson's take these pills and I'll see you back in (3) months?!?!
