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

@hopeful33250 The best way I find to deal with stress is to remove myself from the source of the stress when possible. Obviously, it is not possible to always avoid it, and I have found that exercise, talking it out with my spouse, or doing something fun can help.

Hello! I am new to this group and just wanted to connect. I was diagnosed with Parkinson’s about 8 months ago but now realize that I have had symptoms for nearly a decade. I need to get past frustration that it took so long to start getting the help (medication, PT) that I need. I can’t be the only one that this has happened to.

@teddieann Yes, for a while I was in denial, then rationalization, then acceptance. I also lowered or stopped taking medication because I thought after a good day that I was cured! However, I was quickly reminded by the reappearance of symptoms that I was wrong. I have made every mistake that could be made with my medication, which has caused me to hide in bathrooms or pace until I unlock, but I try not to make the same mistake too many times. Sometimes, no matter what you do, the disease is going to win, and all you can do is wait it out. But getting past the mental barriers is quite important in my experience.

Hello @teddieann and welcome to the PD support group on Mayo Clinic Connect. I agree with @nova11723 about the frustration of getting a diagnosis many years after symptoms began. I've found it works best for me to be grateful to finally have medication and a treatment plan of exercise and a readjustment of my activity levels to accommodate the disorder.

As this your first post, perhaps you could share about how you are doing with this new diagnosis. For example, how are you dealing with the symptoms of PD now? What is the most bothersome symptom you are having?

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

@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.

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.

@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!

@nova11723 lucky you

@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.