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

@bern7475 I'd love to hear from you again when you find the right medication! Will you post updates as it is convenient?

@thelasthaunting
Hello Joel,

I see that you posted on Mayo Clinic Connect in the PD support group. Have you been diagnosed with Parkinson's? Do you have any questions?

I was diagnosed with PD October 2024.
the only question that I have is, how did I get the disease? my Neurologist has not been able to tell me in full detail why and how I got it. all that I have been told is that I am in stage 2, and that it will take about 10-15 years before I will show any change to stage 3.

@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?

My sister was diagnosed with PD a couple of months ago. I am just learning about the disease and how to be supportive. I am interested in the experience of other caregivers.

Hi @amadis - welcome to Mayo Clinic Connect. Your sister is fortunate to have you in her life and for your willingness to support her with her Parkinson's disease diagnosis.

I'd suggest that this discussion in the Connect Parkinson's disease support group might be a good place for you to start, given your stated interests:

- Advice about parkinson's caregiving? https://connect.mayoclinic.org/discussion/advice-about-parkinsons-caregiving/

@amadis

On Connect, we have many caregivers of PD patients. I would like to invite @sillyblone, @jrwilli1, and @kaymirkes to this conversation, as they have loved ones with PD. How is your sister feeling? What are her most bothersome symptoms?

@hopeful33250

My husband has MSA-Type C, unfortunately. PD would be a better diagnosis.

@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?"