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Living with Parkinson's Disease - Meet others & come say hi
Parkinson's Disease | Last Active: May 8 9:58pm | Replies (957)Comment receiving replies
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?
Replies to "@amadis On Connect, we have many caregivers of PD patients. I would like to invite @sillyblone,..."
@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. 🫂
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@hopeful33250
My husband has MSA-Type C, unfortunately. PD would be a better diagnosis.