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
9 days ago
Is there anything I can offer my husband to clear his throat. He can’t swallow well and OFTEN has to clear his throat VERY loudly. Sometimes he gurgles and scares me. Sometimes I ask him if I should call 911. His attempts to clear his throat wake me up in the middle of the night even though his room is downstairs and mine is up. I’ve told his doctor, of course. He nods his head. Big help.
An anonymous caregiver said...
10 days ago
My husband age 71 has had Parkinson's for about 8 years. He's in advanced stages. This morning at breakfast he threw his fork and pounded on the table because his eggs kept falling off his fork and then he couldn't get it into his mouth. He won't let me feed him so he would rather not eat. I have to leave the table because I can't stand to watch this. He has always been a very stubborn man, always needing control. He won't try any exercise or PT so his muscles are very weak. He wants to die and keeps telling me that I don't understand. He has given up on life and I don't know what to do or say anymore. Our daughters won't visit and he doesn't seem to care. The grandchildren, 10 and 8, make him nervous. I'm at my witt's end.
14 days ago
Here's what on my mind today friends.
Over and over I am reading the word "lonely" in posts. Can we explore this more?
I will go first.
Even though I have friends, family and others who are supportive and available, I feel lonely. Case in point when talking with friends regarding New Year plans. Some dressed way up and went to dinner and dancing, others went on planned hikes to view the full moon while others stayed home and rang in the New Year with their family, friends and spouse/significant other. We stayed home and my hubby slept on and off all evening.
I grieve for those long lost days and feel cheated! I love my hubs but dog-gone-it it would be so wonderful to have a stimulating, intellectual conversation (lost his ability to speak clearly due to DBS surgery and has moderate dementia).
Yes, I feel lonely and long to have my partner back. Sorry if I sound like a defeated sad sack. I have been in support groups where I haven't felt free to express myself for fear of being judged for not being the devoted loving wife which I can honestly say I am after 23 years of PD. Thanks for letting me vent. I am finding this online support group helpful without judgement. Have a good week and don't forget to do something nice for yourself.
17 days ago
I have been the caregiver for my partner who has PD now for four years. For the last months it is as though much of the time he is "not at home". He just sits much of the day...very little conversation. I feel very much alone! He has tested negative for dimentia. Does anyone else have this experience?
17 days ago
The beginning of a New Year is nearing two hours away here in South Carolina. It is my hope and prayer that those caring for a loved one will find the task of caregiving less of a hardship, that there will be those stepping up offering you help enabling you to get more rest. To those that have lost a husband or wife or family member, I pray for God to give comfort to our hearts, and guide us through our now journey in life. I believe there is a cure or better treatment soon to come for Parkinson's, I am forever hopeful for the magic pill my husband so often asked the Dr.s for. Hugs to each of you and your love one you are careing for. God bless, Patti
20 days ago
I want to thank everyone here for the support and encouragement I've received over the past 12 months or so. Dad went home to be with the Lord this morning. I thank God that I was able to spend so much time with him the past few years and that I was able to be with him when he was called Home. He seemed to be very much at peace, and I'm thankful that he can rest now.
21 days ago
Hello everyone. I'm new here. My mum has been newly diagnosed as having PD. She is only 61 and the symptoms are minor at this point slight twitching in her finger and doing things slower than usual. Her leg when she walks shuffles a little and she feels like she can't sign her name anymore because of rigidity in her wrist. I'm wondering what other people's experiences have been with how fast the disease progresses? I understand it is meant to be slow progressing.. And it is different for everyone. But in say 10years time.. Is it likely that she will have declined rapidly? Or it can still be mild? I'm just hoping that we will still have time with her. Thank you in advance
23 days ago
Morning everyone... I have a question my husband has Parkinson for about 15 years now, he’s doing ok still can do pretty much everything when he is on his meds, when he is off is when he can’t move he says its like his feet are in cement his top half moves but the bottom half just has a hard time, he gets frustrated especially when we are in public, so I always make sure he is on before we go out. I always time everything we do around his medicine times it’s hard but we mange. Also the biggest thing that bothers him is his muscles he says the seems to be fading away, is that a part of Parkinson? He says his muscles in his elbows are very painful, says he has no muscles in his butt it’s all bone. Everything I read nothing talks about loss of muscle, he is 56 years old. Any advice? Sorry this is long, everyone have a Merry Christmas.
24 days ago
These days are so hard. I go 2-3 times a day now to try to get a few bites of food into Dad, though that's mostly for my benefit. He no longer feels hunger. Please, if any of you pray, ask for peace for him. I fear that I will need to move him soon, as he's in MC and really needs a SNF. They've been very helpful and tolerant, since I'm feeding him, and help sometimes with transfers, and tonight even changed his wet brief and garments. But any day now they could (and probably should) tell us to go, especially since he's spending most of his time in bed. I will work on a back-up plan right after Christmas. The rehab we used before has skilled nursing, and it's just around the corner, so I can still go several times a day. I hope they have an open bed. As much as I'd rather have him at home, I think he's just too much for me to handle. I will pray on it, though.
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