How quickly have you had to adjust your meds?

[Mary Beth Skylis]

Everyone’s Parkinson’s progression seems to be different. My dad’s seems relatively slow, and he hasn’t had to make a ton of adjustments to his medications. How quickly have you had to adjust your medications? Do you feel like you’ve reached a good balance?

[George Sharp]

i haven’t had to adjust my meds yet it seems to be working ok i have had Parkinson’s for 5 years long may it last .

[Mary Beth Skylis]

George, I’m so glad to hear as much! How are you doing otherwise?

[George Sharp]

I am not to bad I think that the Parkinson’s is about the same may be a bit more tremor but a problem I have is what can be done about the amount of saliva I make , I is very annoying I walk around with a pocket full of tissues so i have some where i can get rid of the extra saliva .
It is a bugger. But never mind there is a lot of people much worse off than All the best to every one George

[Krukar]

Mary Beth,

I started 8/2020 taking 5.5 C/L pills per day. Currently I take 6 pills per day. There are ways to adjust the pills rather than increasing them. Also once you increase your dose it is difficult to reduce them. My Doctors encourage me to exercise more and try different strategies….IE Accupuncture, Qui Gong, LSVT to name just a few. I hope I have reached a balance and will work to not just take more medication!

 

 

 

[Mary Beth Skylis]

Krukar, have you found that any of those alternative treatments noticeably help?

[Krukar]

Mary Beth,

Acupuncture seem to have helped, massage is good also. Qui gong is just a new type of stretching. I have also begun working with a new Physical Therapist. None of it is too crazy just a little different. Blessings, Mike

 

 

[Mary Beth Skylis]

I’ve wondered about Acupuncture. That’s one thing that dad hasn’t tried yet. How do you feel after those sessions?

[Alan M]

Thanks for you sound and rationale advice, Mike.  I need to have another visit to my GP — hopefully she can help me sort things out before the Neuro drops by our regional hospital again.

Cheers and stay well, Alan

[Alan M]

I started on Sinemet (25/100) in October of 2021.  I take it three times daily.  Taking it routinely, I find the “on times” no where near long enough, to subdue the motor and non-motor PD symptoms.

The thing I find the most disturbing is the unpredictability of how well changes to these meds will improve their efficacy.  I see my Neuro twice a year (I’ve seen him once in-person and spoke to him on the telephone once) since his original diagnosis.  He works 5.5 hours away in Auckland.

I believe I should be taking six (6) Sinemets per day, not 3.  But I’m also concerned it may worsen the occurrence of dyskinesia.  Another bug bear for me is the REM-SBD issue.  I’ve tried dealing with them using Circadin (2mg MR) but it hasn’t helped subdue the wild outbursts at night or violent movements while in REM sleep.

[Mike Popkins]

Alan, Did your doctor warn you about taking Sinemet with protein foods? My doc didn’t mention it, I brought it up.

[Alan M]

Nope — n’er a word from my Neuro… but I had a visit from our new PD Nurse in my area a month ago.  She mentioned it to me.  She suggests a “Mediterranean Diet” instead.  I’m still working on this change, Mike.  Changes in diet are the most difficult on a limited budget.

• This reply was modified 1 week, 3 days ago by Alan M. Reason: typo

[Krukar]

Hi Alan,

I am not a Medical Professional. I can not over emphasize that. I began Sinemet in 10/20, I started with 5.5 pills per day. Today I take 6 pills per day. My Neurologist has encouraged me not to increase my total pills.  My last dose 2 pills that I took at 4:00 pm she suggested I split them up 1 at 4:00 pm and 1 at 8 pm, so far so good. I also do different non medical things that seem to work. My sleep is pretty calm. I take Melatonin which helps my sleep.

Follow your Doctors advice. They know academically. You of course know your body. Perhaps you can talk with them and share what your experience has been. Blessings, Mike

[Paul soo]

i was diagnosed 2years ago. here are my meds and schedule

by 10 am 3 c/L pills  25 / 100

1 amatadine  100mg for stiffnes*

 

 

1ama1 entacapone 200 mg

 

2pm 3 c/l pill   25/200

 

by 6 pm   entacapone 200mg  3 c/l 25/100

bedtime

1     50/2oo  extended release  pill’

2 tryptophan capsules

1  melotonin 12mg

1 odt(aorally disintegrating tablet  clomanzepam .25mg

mn* my neurolgist  says i should up my amantadine  I said it makes me loopy,,  I met her half way and take      50mg at night before i go  to bedtime

I almost crave sleep heo

Is this a lot of c/L?     i’m trying to find the source of my loopiness  it took  me lode to 1hour to write this  yes zi know  everybody  different in hoe they react to  meds

 

 

 

 

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