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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

KatyKski said...

about 3 hours

Hi my name is Kate I'm 41, I live with my mother 75 who has slow progressing Parkinsons. She was diagnosed 8 years ago. She's just starting to show symptoms of dellusion/hallucinations. She claims she saw a bug and or worm on the floor of her bedroom and now she thinks that every little thing on the floor is a worm and has been picking them up. I asked her to save them for me so I could see. She showed me a zip lock this morning full of pieces of lint, paint chips, dried grass ect. She said they were moving when she put them in there but they are dead now. Her near vision is bad so I asked her to look at them again with her glasses or magnifying glass. When I tell her that they are not bugs she doesn't believe me. She doesn't trust me. I told her that I belive she may have seen one but that the rest of these in the bag are not bugs. Then she says "Whatever". I told her if she sees them again to kill them, I told her they aren't going to hurt her. She is still very functioning. She controls the money, pays the bills and eve goes to the office where she's a counselor in private practice 3 days a week (I drive). After today's bug episode I told her we need to see the doctor, then I got the number off her phone and left a message to see if we can move up our next appointment. I don't know what else to do or if there's a better way to handle it. I think from now on instead of telling her what I think I'll just agree with her that they are bugs? I don't know. The arguing really takes a toll on our relationship and we are together 24/7. Any suggestions would be appreciated.

katlent said...

about 2 hours

seagull3 said...

3 days

Hey guys. I have a problem. We're from Massachusetts. (that's not the problem haha) Grew up there (my husband and I. He has Parkinson's now.). We moved to AZ 6 years ago. Now we are in VT as a stepping stone back to Mass. The Vermont winter was very rough for my husband. He desperately wants to move back to AZ. I feel I need to stay here in VT,or in Mass eventually because

  1. i'm bipolar w/depression and anxiety
  2. i'm his caregiver
  3. i'm my son's caregiving (he has William's Syndrome age 21) 4.. I feel I need the support of my daughter who is in Mass
  4. All my long time friends are in Mass.

What do we do? We are at a total crossroads. We don't argue about it, but we both want the opposite things. I would love to go back to AZ for him. I mean it seems the right thing to do. But I'm scared.

Any suggestions? Hugs? Prayers? :)

Well, there's a lot more to it, but we are seeing a therapist on Thurs so... Thanks for reading. It helps just to write it down <3

Debbie141 said...

2 days

seagull3 said...

2 days

katlent said...

4 days

Good morning, my name is Kathy and this is the first time for me to join a caregiver support group. My husband and I have been married for 40 years, We have 3 wonderful children and 5 grandchildren with one more on the way, due in September.
I took care of my Mother in law for about the last five years she dealt with Parkinson's. She and I were very close, we even shared the same birthday... She passed away in November of 2011 and six months later on June 21, 2012 her son, my husband was diagnosed with early onset Parkinson's. The shock of the diagnosis was devastating, especially since he had undergone surgery for a herniated disc in his neck, and rotator cuff surgery on his left shoulder just months before. His recovery after surgery was not as good as they had hoped and when the cardiologist who did his pre-op testing noticed his gate was "not quite right" we were referred to a neurologist at UT Southwestern in Dallas. I was initially terrified of what was going to happen to him. After seeing what Mom had gone through the last five years of her life, I was scared to death about what was in store for David and myself. But together we dealt with the disease reasonably well for about 5 years. His medication kept his symptoms under control for the most part but then in January 2017 his symptoms became more difficult to manage with medication only. So after much testing and research David was approved for Deep Brain Stimulation surgery. If you are not familiar with this, it is a very invasive brain surgery but has a good success rate. David recovered well, still takes some medication and now a little over a year later, at age 61 he is doing well physically. I am like many of you though. My husband is not the person he used to be. His personality is different, his moodiness and "no filter" are difficult to deal with. Not sure if this is the case with any of you, but David puts up a good front in the presence of others. But around me or at home he acts helpless, I feel like a gopher, but never do anything right.. Working full time myself still, and then coming home to a " box of chocolates" (never know what I'm gonna get) is very daunting. He doesn't like being alone, but it seems I irritate him by just being there, I too am at a loss as to how to deal with these different situations. Taking care of his mom was different. I was glad to to it for her, I was honored that I was able to help and care for her. She did, towards the last, have a change in personality too, but this is different. I get angry, frustrated and so terribly sad.....I struggle every day worrying about how will I be able to continue this journey.
To all of you struggling with your own situations, I pray for all of us, That God will give us the strength and courage to do our best for those we love. Peace be with you

Marshmallow2 said...

2 days

katlent said...

2 days

morrlsly75 said...

5 days

This is my first post my dad has parkinsons and I've been in denial for a long time. His personality is so different it's like I've lost him but hes still here. The anger out bursts are so difficult he flies off the handle about the littlest thing. I am at a loss for how to deal with things

4 days

morrlsly75 said...

4 days

nancy joan said...

5 days

What's on my mind today is about my partner needing to eventually live with his adult children a few states away from us. He has no savings or pension and no longterm care policy or insurance. I have a little savings but am getting older myself and will need to have that savings to live off of. We are renters. His adult son I am closest to says they are so grateful to me for my loving care for their dad and they know I can do it on my own when things get really rough and that they love their dad and will always have a place for him in their home. I think he will actually be ok with them, it's me that will probably have a terribly hard time with this. My adult children and grandchildren and my job are all here where we have lived for 35 years and I can't afford to retire and move with him. This is so sad for us but then on the other hand sometimes I think everything is going to be ok. We are lucky to have adult kids that love us both and on whom we can rely when we can't do it by ourselves. That's what's on my mind today. Thanks for listening (reading).

5 days

First post and unsure how to ask. Husband is 75, been on Carbo/levodopa 25/100 x 5 times a day for about 2 years. Is there ANYTHING that offsets the horrible sedative effects of this medicine? Not sure if it's really doing any good as he sleeps/dozes a lot during the day and he calls it his "Sleeping Pill" I need to also know how much to do for him as a helper, without enabling him to do nothing, He is getting weaker and he really doesn't want to talk about.. Also, does NOT want me at his Dr. appts.

islandgirl6337 said...

5 days

Kay Marie said...

4 days

5 days

How do you deal with the delusions. This is anew phase.

Marshmallow2 said...

5 days

6 days

Hi everyone, feeling at such a loss today and wanted to ask for prayers to help me get through this day, ( Thanks ) this month is a difficult one. My husband and I were married 62 years ago today, I don't remember last year, was in such a fog after loosing him, seems like this second year is harder.. His birthday is on May 27 th. Caring for him through the years with Parkinson's. I do know he is at peace now, and I must travel this journey, and know only with Gods help in doing so. I continually pray for all with this horrable disease and to each of you that are caring for your loved one God bless each of you. Hugs, Patti

GoldenPoppy said...

5 days

4 days

9 days

Hello...not sure how to get started. My husband was diagnosed 2 years ago w/PD - he just turned 70. Dr says he is in early stage, but I wonder when does it get worse? I know everyone is different, but is there an average time? Thanks.

Elenta said...

8 days

Elenta said...

8 days

seagull3 said...

11 days

Hey everyone. I think my husband is going to need a wheelchair soon. How do you go about getting one?

Kay Marie said...

4 days

seagull3 said...

4 days

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