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

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?

@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! 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.

@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.

@nova11723
I agree that stress does impact sleep, and lack of sleep makes physical problems more troublesome. A daily exercise plan is a great way to de-stress and also an important way to stay stronger with a PD diagnosis.

How do you usually deal with stress?

@emmys Hello. Did you actually start taking the Crexont? I tried it for two months, and the anxiety that it caused made it pretty unbearable. I tried different dosages, but I couldn't get anything to work. I also showed my Parkinsons much more than I ever had before. I prefer the flexibility of Simenet and its lack of significant side effects.

@hopeful33250 I see. Okay, thanks. Hopefully, research can give more insight into how Parkinsons is caused to help with developing even better treatment options.

My most bothersome symptoms? Maybe the impact of stress on my sleep and medication effectiveness. It can be frustrating when stress, especially when the source of it is not completely clear, suddenly renders my medication dosage insufficient. I guess on the positive side, this forces me to deal with stress much faster.

I have always been told that it will be Genetic or Idiopathic per everyone that is in the medical field. They say my spouse is Idiopathic. But my Dad, brother were in the military or worked for them. Coincidence or not! I have essential tremors and it has not gotten past that stage...if it did it would be Genetic and possibly Idiopathic as I laundered my spouses clothes, etc.

@amadis You are so welcome! Anytime!

Hello @nova11723

My understanding is that people on farms might be exposed to contaminated groundwater and other environmental toxins. (This is also true of veterans who were exposed to Agent Orange.)

Here is a link to an article from the Mayo Clinic website about Parkinson's: https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055

If you scroll down the article, you will see a heading titled, Causes. Here, environmental factors are mentioned, such as well water.

Here is a link to an article from the Davis Phinney Foundation, titled "A Primer on Parkinson's for the Newly Diagnosed":
https://davisphinneyfoundation.org/blog/a-primer-on-parkinsons-for-the-newly-diagnosed/
How are you feeling? What are your most bothersome symptoms at the current time?