Parkinson's Support Group
Welcome to this online support group for caregivers, family, friends, and others with an interest in Parkinson's care. Please introduce yourself - Ask for advice - Share your experiences caring for a loved one with Parkinson's disease. Talk about symptoms, treatment options, side effects, daily life, your tips for others. Vent, laugh, and come back as often as you need to feel less alone.
You can also find information that will may you manage financial and legal matters for your loved one in the Caregiving Money Matters Resource Center.
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Lost in Florida said...
2 days ago
IMPORTANT MESSAGE TO THE DEAR CAREGIVERS. I too was a caregiver to my husband who has Parkinson's. Last Friday evening, I suffered a mini stroke -- yes, that is right a stroke. Got out of hospital on Tuesday. Temporarily lost complete use of left hand, left foot. After a thorough examination, there was NO physical reason found to have caused this......
PLEASE LISTEN TO ME -- IT WAS CAUSED BY MY INABILITY TO RELAX, GET ENOUGH SLEEP, ETC. THE BODY EVENTUALLY REACTS PHYSICALLY. . I WANT YOU TO REMEMBER THIS AND MY HOPE IS THAT I HAVE HELPED YOU AVOID WHAT I WAS NOT ABLE TO DO.......I AM NOW DIGGING MYSELF UP OUT OF THIS HOLE --- NOTICE I SAID UP NOT DOWN. AND IF YOU HAVE A MOMENT, PLEASE KEEP ME IN YOUR THOUGHTS AND PRAYERS.........LIFE IS VERY SHORT, TAKE GOOD CARE OF YOUR BODY AND YOUR MIND.........MARY
6 days ago
It's been a month since Dad's last major decline -- it was chewing & swallowing then. He's eating some now, though very little, just not much appetite. This past week, though, the hallucinations have taken over --he thinks there's been an accident & he needs to give his statement; sees blood everywhere; asks me if I have to go to court; not sure where he left his car (I sold it 2 years ago); thinks he has to work tomorrow (every day); thought he should 'go home' yesterday when I left, & was surprised when I told him he could stay there another night --thought it was nice they would have a room for him to stay in; thought a breadstick was a banana; asked another resident if she remembered someone he went to school with; and more. This has been going on for about 4 days. He's calm and not agitated, but concerned about his part (or witnessing) in this 'accident/incident' that he thinks took place & getting to work. There's a new resident there for the last 8-9 days that has acted out terribly; yelling and dragging herself on the floor to the point of a (little) bloody rug burn. She kept talking to Dad, trying to get him to call someone for her to the point he wouldn't talk to me while he was trying to listen to her. Could she be the cause of his new problems? Or could it be a UTI or something else? He has an appt with his MD in 2 weeks.
8 days ago
Like the other posts I read, my husband was just recently dignosed with Parkinsons but I think he has had it and symtoms for years. The ups ad downs are overwhelming. I must be kidding myself-there are no ups. It's a good day if he doesn't fall and hurt himself more.
12 days ago
For the first time in her entire adult life my mother didn't vote today because "she didn't feel up to it" because of crappy weather on pit end. Yet another thing this [profanity removed] disease has taken from her. Her mother was a suffragette and she was always a proponent for voting. Yet another thing this [profanity removed] disease has taken from my once proud mom. Just sad and angry tonight.
12 days ago
Newbie here, I have been lucky in my 54 years to have never had anyone in my family or friends that has had PD. Two weeks ago my husband was given the diagnosis. He has been having many symptoms for a while now. I just could not get anyone to listen. They started him on the neupro patch. that did not work, he would fall asleep so fast he would fall or drop his coffee in his lap. What gets me right now is the "lack" of compassion for Anyone around him now, and the anger towards almost everyone. He also has PTSD and seizures which makes it all worse. I try to talk to him and he gets so upset and angry at me. I want to just lock me up and cry. But then in five mins he comes back and it is like nothing happened. My husband was always a gentleman and put others first and helped everyone. Now, it is like he don't care about anyone but him. He got like this before the medicine -I don't know what to do. We go back tomorrow evening to his neurologist to try different medicine. --and I will Add all of YOU to my prayers/
12 days ago
Hi everyone. As I lay in bed crying, this is my first time on one of these sites. My father has had Parkinson's for over 10 years now. My husband and I got married two years ago and being an only child we decided to stay with my parents to help my mom and him out. I feel like the worst person in the world for even typing this because I'm not the one with the disease, but lately I've been finding myself getting overly frustrated and upset with my dad. Today I lashed out on him over the dumbest thing and I can't for the life of me figure out the actual reason. I hate seeing him struggle and I miss the dad I had growing up. I'm sorry if this sounds terrible, but I pray someone knows how I feel and can give me some words of wisdom. Thinking of you all and your loved ones. <3
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