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

@hopeful33250
I would like to say welcome as well. Parkinsons is different with everyone. I am the caregiver of my spouse. He is end stage. He is dealing with so many conditions that have been part of having Parkinsons. My brother is also dealing with end stage. They both are suffering physically and emotionally. Each day seems harder as the disease progresses. It seems everytime that he is hospitalized or sees a physician ..a new medication , new PT, new speech and many other obstacles. I hear him breathing and moving in his bed. But he is home in his own bed and our home. He has been been told so many things by different physicians through the years. He is starting home health to include PT and nursing. He has limited energy..but he wants to be independent as long as possible. He was hospitalized due to breakthrough seizures. Which comes with medication changes or increases . It frustrates him and it does to me as well. I have learned that he reacts to my response to treatment. I try my best to do what will work for him and give him quality of life and encourages him to try and not give up until it is considered time to. I am sad..but I can not let him know that I feel this way. I want positive vibes. My spouse trusts me so much to help him the best of my ability. Do I cry? Yes, I do. But do I laugh..yes I do. He needs me to be me irregardless of the outcome. He sees it in my expressions and will ask me questions if he does not understand the situation. I will say it has been a long year so far. Hoping for good vibes. Please ask any question if needed. I will try my best to answer. I will say having three loved ones who have had this illness is frustrating, different and overwhelming at the same time. Is it fair. No it is not. I did speak with my brother and he was more concerned about my spouse. My brother is starting to succumb to his Parkinsons. Hospice is helping . I will say that I have friends and family who are very supportive.
GN and always ask as you won't get all your answers from physicians. Sometimes common sense goes a long way. 🫂

@hopeful33250
Think I'll get some t-shirts made "I have Parkinson's, what's your excuse?"

@sillyblone Thank you for taking the time to write. I greatly appreciate it.

@thelasthaunting

I'm not sure that there are any answers as to why some people develop Parkinson's while others don't. Is there anyone else in your family who has/or had PD? It is has been discovered that if you grew up on a farm, you can be more likely to develop PD.

The most important thing right now is to deal with PD treatment and exercise. If you would like more educational information about PD, you will find many articles and webinars on the Davis Phinney Foundation website.

Exercise is an important treatment for PD. Have you been referred for physical therapy to treat your PD?

@hopeful33250 "It is has been discovered that if you grew up on a farm, you can be more likely to develop PD."

I just joined this group, and this seems a very interesting statement. Is it the animals or possibly the chemicals? I didn't grow up on a farm but was diagnosed when I was 40. I kind of thought it was due to the anxiety that runs in my family and some unknown other factor.

@sillyblone Thank you for taking the time to write. I greatly appreciate it.

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?

@cartercd
Hi, I'm Emmy. Parkinsons diagnosis in 2020. I've been taking the generic for Sinemet for Carbidopa/Levodopa and the generic for Lodosyn for Carbidopa.
I'm considering starting a new drug names Crexont. I'd like some feedback on experiences with taking this drug from the group.
Thanks so much.

@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.