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.
Help spread the support to more people in need -- Please tell a friend or two. Thanks!
What's New Today
3 days ago
Feeling so frustrated. I feel so bad for my Hubby. His severe BP crashes continue. He's frustrated and mad at this sudden change. Our MDD is befuddled. She has cut back his Sinemet and we are raising the Northera to the max dose. She agrees that this overnight change is very unusual and God bless her she's so caring and giving. Spent over an hour with us for his appointment. It is so unpredictable with no rthme or reason. She has given us an order for the Ustep walker but that will take a few weeks to arrive. Me? Well right now I feel like his shadow. Trying not to mother his every move but afraid he'll fall. It's a good thing he is a sweet tempered guy. But I see his frustration. The crashes are also affecting his cognition badly. He hates that I now need to moniter his Meds, that he can't do what he wants. Can't walk very far. It's forcing us to change our lifestyle from fulltime Living in our RV to temporarily moving into an apartment. . Hoping tomorrow will be a better day
4 days ago
I have nonmotor symptoms that have and are just about doing me and my family in. The absolute worst is the dysfunctional gi. I was severely ill last year and lost 90 lbs from constant chronic pain. Today I'm convinced it's the carbadopa levadopa I've been on for the last 8+ years. I'm to the point where I have to eat a little something before during and after I take my every 2 hour dose little to no protein of course. I have had severe ibs attacks which cause horrible gerd from the hiatal hernia. When the esophageal spasms start my meds get stuck and don't work. Then I feel like I can't breathe cus of the golf balls in my throat I get lightheaded dizzy and faint feeling. Due to all this I have no quality of life. I have been limited to very few foods making it impossible for me to eat out or off schedule. So we have no friends or social life. I try to push my husband out of the house to spend some time with a couple of friends he still has. My friends are gone. My son of 27 and his girlfriend live here I'm sad to say. He watched me starve last year. The best is trying to now find an antidepressant/anti anxiety pill that my body won't reject. I was on the lowest mildest dose of remeron only to develop a severe sinus infection. Without the hope of finding an antidepressant I'm so lost. I had a very bad attack today. It's just tearing my husband up. He is retired and 8 years my senior.
Margaret JoAnn said...
8 days ago
I just wanted to let you all know that I made my first face to face Parkinson's caregivers support group at a hospital in NYC and that it was extremely helpful. One suggestion was that I company my husband to his doctor which I hadn't done since he was first diagnosed about 4 years ago. Because of the deterioration of his gait and his increased defensiveness, I felt it was time. They are ruling out Normal pressure hydrocephalous but I think it is just the progression of the Parkinson's symptoms. One thing I did learn is that it is very important for the parkinson's patient to drink a glass of water when taking their pills so that the pills break up and dissolve in the body and can be more effective. The other thing I learned is that I don't have to feel guilty about not wanting to take care of him when the time comes that he gets much worse. If I was with him for a lifetime, I might feel differently but this was a later in life relationship and I want to have time to enjoy what is left in my own life. I also think that my resentment would just make things worse between us.
11 days ago
I need input on how to respond to the pity that I seem to get when I tell some people that Dan has Parkinson's disease. For example: today the one woman I was spoke to said "Oh, that's bad, bad, bad I know Parkinson's disease is really bad." I know she meant well, but it's depressing enough without having her say it's bad bad bad. As mean as it might seem, I nearly walked away from her! I couldn't deal with it. I get tired also I'm describing to people who don't know about Parkinson's disease how it isn't easily diagnosed except over time and get tired of explaining anything to anybody. Thoughts? Advice? Opinions? I'm wide open.
Lana W said...
13 days ago
I am the niece (although only 3 years younger) to my uncle. I feel so lonely. I am not sure if anyone else feels this way but not having everyday human interaction with people after being out in the world as a professional I'm finding very difficult. My uncle has Down syndrome, autism and Parkinson's. I felt it was time to reach out.
Dress Makesr said...
13 days ago
My husband is 65, 10years PD. Our daughter is only 2hrs away with our 2 beautiful grandsons...she is pulling away, I've expressed how much we miss them. I've tried to plan trips, Florida, up north and have them here for his 65th Birthday, our 45th Anniversary... no show. She vacations with her inlaws. I'm 2 yr Cancer free from Liver Cancer... this is killing me to see him hurt by this. Any suggestions?
16 days ago
Hi I'm new to this but really need to talk to people in my situation. There is an age difference between my husband and I. I'm 51 and he just turned 76. We've been married 24 years. He has parkinsons, the past several years he had no issues, last year he started hallucinating, found out its coming from the disease itself. It's been difficult because I still work full time. I have my mom and his sister stay with him while I work. Anyone else in this situation?
16 days ago
Hello, I am sole caregiver for my husband. He received his DX in about 2011, just after he retired. He now shuffles as he walks, doesn't have fine skills any more in his hands, though he can still do some things. His speech is bad. He has dentures but will not wear them, makes eating difficult. He also insists in taking large bites. I have begun cutting his food when we go out to eat.
Our life is on hold since it is hard to communicate with him and his handwriting is horrid.. He saw his neurologist yesterday and his meds were upped to TID three times a day. He began last night. This morning he started vomiting and having diaherreah.
I have my own health problems, mobility and depression. I am being treated for this.....but there are days like this when even prayers are hsrd. I am tired, we have no family or friends near us and only recently have found a church we feel comfortable with. But I still am not ready to ask them for help, basically because I don't know them well yet.
We did go to a l9cal PD group but got nothing from it. Somebody would come in, give a talk, no questions or talking and then a lite snack and everybody left.
I'm sorry to bother you all, but it has been a tough day for me with him being sick.
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