Living with Parkinson's Disease - Meet others & come say hi

@hopeful33250 no I didn't tell my doctor that I wasn't taking it, but did let her know of the nausea etc. I work for a tax company and as of April 15th will no longer be working. I'll be at home more and figured I'd start again. Thanks for the information. I'm going to try the titration you described. Thank you for the input!

@hopeful33250
At age 75 I have of course experienced many many negativesymptoms over the course of my life. I find it challenging to figure out whether a particular symptom is PD or something else. I have lots of new things happening such as random stabbing feelings all over my body and extreme shortness of breath even when just sitting and reading. I think I am going to make a list of everything that I have noticed and bring it to my next neurology appointment.
I think the most troubling symptom I am having now is a balance issue. I sometimes walk down the hall and literally bump into the wall even though I thought I was walking down the middle.
Take care, everyone.
Teddie

@louismines Nah, just trying to stay positive. I would not consider anybody who has this disease as "lucky."

Hello @brinkmanlc4440 and welcome to Mayo Clinic Connect. I certainly can understand the problems you are having. I also started taking C/L (carbidopa/levodopa) while I was still working. My doctor told me to take it with low-protein meals (which resulted in less nausea), and she also titrated my dose. The titration went like this: I began taking 1/2 tablet each day for a week, then increased by 1/2 tablet each week until I reached 3 full tablets a day. It took a while, but the side effects were greatly reduced.

I have a concern that you went off the drug. Did you consult with your doctor beforehand? There are lots of other PD drugs that can help you.

What is your most bothersome PD symptom right now?

@brinkmanlc4440 When I was first diagnosed, I don't remember my symptoms being too bad, and I only took a MAO-B inhibitor. Jumping right to Carbidopa/Levodopa may be a bit much. However, I am not a doctor. I agree with finding a movement disorder specialist and not just a general neurologist.

Taking 25 mg/100 mg dosage has always been safe for me. Taking more than one tablet at a time can sometimes lead to problems.

@nova11723 lucky you

@brinkmanlc4440
Just my opinions: you did not say what kind of doctor you are getting advice from;
it would be most helpful to be consulting a "movement disorder specialist" (i.e. compared to a general neurologist or primary care) since that kind of doctor (the movement disorder specialist")will know more about the meds available, to assist you in finding something that helps you.
The "gold standard" levodopa did not work for me either.
PS I have learned to not say I am "tired" or "sleepy" and instead say I have "fatigue." I have found many providers think tired=the way you feel after too much exertion, and it would go away if you just rest for a while. But parkinson "tired" is not that, I think "fatigue" is a better word. My parkinson fatigue does not go away if I just rest for a while. My parkinson "tired" comes from within my body, and does not result from too much activity.
Problem is you may hear them respond that "fatigue" is not specific enough, or that they don't know what you mean.
Similarly "sleepy" is a risky word to use, then they will think you have sleep problems and send you to a sleep doctor. The sleep doc might find something sleep related, but it won't necessarily get you better parkinsons control. Been there, done that.
Words have to be chosen carefully.
Best of luck!

I was diagnosed with early stages of Parkinson’s January 2 of this year. I’ve been trying to take the recommended medication (carbidopa/levodopa) but it literally makes me sick to my stomach. And I am very very tired. The doctor said to take with fruit. Did anyone else have this situation? I work part time and it was so bad I quit taking it all together.

@louismines Ha! In all seriousness, I have found that this disease has actually improved my marriage. All these small things that caused arguments before don't seem to matter any longer.

@nova11723 I frequently try to ignore most of spouses stressful comments