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

Thanks.....thinking my balance issues were due to 3 UTI’s with meds including Cipro! Cipro did a number on me.....I seem to be doing better in that regard. Plan to monitor closely!

Hello @psvantx

Thanks for your update. From what you said you have decided not to take any meds at this time. As I looked back at some of your original posts I see that you have had some problems with drooling and balance. These are certainly symptomatic of PD but it is hard to tell if they are bothersome enough to try meds or not. I'm supposing that they must not be too bothersome at this time. Is that the case?

I wish you well as you deal with this situation. Do you exercise on a regular basis? There are very good classes available for us seniors that help deal with balance issues. I would encourage you to look into them. Without exercise, I would be much more disabled than I am now.

Saw my doctor again this week to clear up some confusion....asked him how I could see improvement in my symptoms if I basicly don’t have any....yet! He agreed that i shouldn’t start the meds yet.....and that further development could be 10 years from now! (or less)! So thankful I went back to ask questions.....wondering why this info wasn’t forthcoming initially instead of prescribing meds!! 😳

Hello @psvantx,

Will you provide an update if you start taking the meds your doctor prescribed? I would like to know if they helped you.

Thank-you so much!

I haven’t had a problem with the Clonazepam and dry mouth, though I was diagnosed with dry mouth yyears before. My son had a tooth implant with no insurance and it was in the area of $3 k and I thought that was outrageous.
I skipped the datscan. My neurologist said it wasn’t really needed since the symptoms were so obvious. Well, I hadn’t seen them nor had the doctors in Houston that gave me expensive “key man” executive exams every year. Follow instructions,but you’ll probably start small and work your way up to the desired dosage to be sure you don’t have any surprises. I’m 74 and only this past year quit driving at night and limit myself to close in known streets - 5 years after diagnosis.
Yeah, quality neurologists are hard to get in to see. One thing, if the meds work you’ll have answered that question.
Recumbent bike over at the Fitness center is supposed to help balance and exercise in general helps delay progression. The exercise is good for you either way, assuming the nurse says the sudden change won’t kill you! Write down all your questions, and answers, and good luck.

Hello, @psvantx - I wanted to add my welcome to Mayo Clinic Connect along with @hopeful33250. That sounds really hard having your biggest fear come true with getting a Parkinson's disease (PD) diagnosis recently after watching your mother and brother suffer and die from the disease. I have never had a PD diagnosis, but have had high anxiety before with high-stress situations. I recognize that is a difficult way to live.

Since you are currently thinking over the side effects you read about the medications prescribed for your Parkinson's, rasagiline and carbidopa-levodopa, I'm hoping that others can come in and talk about their (or a loved one's) experiences with these medications. @psvantx, please meet @susan62 @jdb @ggopher @trouble4343 @anna1060.

I'd also like to invite other members who've talked about these two medications in various Mayo Clinic Connect discussions —@safari1949 @mjfelder1 @maxaz1 @stephenmcelroy @justinian @gwgrover — to share any side effects or lack thereof they (or someone close to them) has had with taking rasagiline and/or carbidopa-levodopa.

psvantx, you talked about your anxiety being through the roof at this point. Is this due to the diagnosis, what you read about potential medication side effects, or something else?

@psvantx,
I was diagnosed in late 2014 and put on Sinemet immediately with Azilect being added some months later.
I have not had a significant problem, just a little stomach fullness and a tiny bit of unrest. I had almost no experience with or knowledge of PD which has enabled me to take it in in small bites and has held my anxiety to what half a Clonazepam twice a day controls.
I would highly recommend you try the pills. I belong to two in-person support groups and have never heard of anyone who reacted significantly to these two drugs. Sure. 1 in whatever thousand may have some sort of issue but the rest don’t. You don’t stay in your bedroom because driving to the store is hazardous do you? After 5 1/2 years most people are amazed that I have PD. Not saying you will be as fortunate as I am, at 74 it won’t kill me, but it is a quality of life thing.
Let us know how it goes-we're on your side. Get plenty of exercise, eat right and enjoy life. This is just a speed-bump.

Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth:

I'd like to invite you to the new group on Connect dedicated to discussions about Parkinson's disease. It's a space where we can ask questions, share tips and learn about living with Parkinson's from each other. Whether you live with Parkinson's or care for someone with Parkinson's, please join us. Pull up a chair and tell us a bit about yourself.