September 12, 2019 at 5:06 pm #15495
Since PD is progressive, it may be inevitable we need to change our medication dosage. Have you had to adjust your meds because symptoms were getting worse?
October 2, 2019 at 7:37 pm #15638RobertParticipant
I am detail oriented, so bear with all the details. And I ask for forgiveness up front for my lame attempts at humor. If you can’t have a sense of humor with PD I don’t know how you can cope with this “very interesting disease, this PD”.
I would be interested if anyone else has had similar experiences in getting to either the right doseage or the right meds to get them on a somewhat even keel with the “very interesting disease, this PD”.
I have indeed had to change my medication doses. Here is my Parkinson’s medication travelogue so far. ( dates are approximate).
Nov 2018 started on 1 1/2 sinemet 3 times a day.
Feb 2019 added entacapone with the mid-day sinemet dose. To see if it extends the on time.
June 2019 added sinemet at bedtime
At this point it seemed like the sinemet quit working!
Now we (my Doctor) decides to get serious about the meds!
July 2019 changed to 2 sinemet 5 times a day plus 2 sinemet controlled release at bedtime plus 2 sinemet if I awaken during the night. Which I always do. That adds up to 14 sinemet a day.
July 2019 added 1 florinef to counter low blood pressure.
August 2019 added 2nd florinef to counter continued low blood pressure.
I got two different pills for bladder problems too.
So a year ago I was started on 4 1/2 sinement daily to start and now eight months later I am on 14 sinemet daily and two florinef pills for low blood pressure.
I do feel kind of drugged up.
Oct 2019. So now I am now starting to again get occasional wearing off at the end of each sinemet dose.
Next appointment is in November, my one year anniversary of starting meds.
I think I would like to return this high dose version of PD and get the low dose version. I am new at this. Can I still do that? Did I miss the deadline or something? I do have a good excuse if I missed the deadline. I have PD!
October 3, 2019 at 6:53 am #15639
hi robert,thanks for sharing this and i love your sense of humor! sad to say, i think most of us struggle with the meds. trying to find he right ‘cocktail’ of drugs to alleviate our symptoms can be quite daunting. do you exercise and how is your diet?
November 15, 2019 at 2:55 pm #16477DanParticipant
Robert, thank you sir! Great to read personal accounts and approaches to PD symptom control. I am 71, was diagnosed in 2009, likely had telltale signs a few years prior. As on time permits I will reiterate my convoluted trial and rabbit – chase with meds.
November 19, 2019 at 10:32 am #16526
Hi Robert, congrats on keeping track of your meds regiment, but for myself, after 11 years with PD, that approach becomes overwhelming, and half the times, there never seems to be rhyme or reason to this “on” and “off” effect from my meds. I’m off when i think I should be on, and I find it so hard to eat the right foods at right times, which doesn’t help. I’ve had plenty of adjustments over the years, I’ve tried Apokyn injections, had DBS surgery 3 years ago, now take my meds 4x a day, a neupro patch, and inhaler, and still can’t get it right, lol, still get off periods, still have balance issues, freezing and walking problems. So for me, it’s part of my life, I deal with it, and move on, too many things to complain about with this disease over the years, I’m thankful for my wonderful friends and family, they are my support to keep going.
November 19, 2019 at 2:49 pm #16533
you have a wonderful attitude that will serve you well in battling this disease.. taking my meds and when to coordinate that with meals certainly overwhelms me…
November 19, 2019 at 9:45 pm #16539
Oh, for sure, meds and meal time is hard to get the scheduling right, and I’m definitely fighting a losing battle, I lose track of time, especially when I’m out, and before I know it I’m at lunch eating a burgher, at that point nothing else to do but enjoy the burgher, and deal with my PD after.
November 20, 2019 at 7:23 am #16540Mary Beth SkylisKeymaster
I’m a forum moderator here. My Dad was diagnosed with PD in 2013. I’m curious about how DBS did or didn’t impact the timing of your drugs? My Dad just underwent DBS a few months ago.
November 20, 2019 at 10:25 am #16542
Hi MaryBeth, it didn’t actually effect the the timing or dosage of my meds, but it did somewhat get my balance back, i was able to walk and stand again without always being on the verge of falling down. My major issue has been balance and it did help, it accomplished the major goal and reason I finally went through with the operation, I was able to walk and dance with my son at his wedding three months later.
I’m not sure I helped much, but I wish you father the best and that he has positive results from the operation.
November 21, 2019 at 12:40 am #16555DanParticipant
Laura, wow. Your dragon is much bigger than mine. I have to say, It appears that there is certainly more to be tried, than what I have done up to now. I haven’t scratched the surface compared to what you have been through. Trying to schedule ld/cd capsules and keeping a log, watching food intake is where I live now.
585 / 2340 mg/d ld/cd = 12 cap / d
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