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    support group for Parkinson's Disease
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    vicki1018 posted:
    I live in Sedalia, Mo and we do not have much here to help people with Parkinson's. We need support groups for people with PD and also for caregivers. Have any of you ever started one? Do any of you live in Sedalia or close to us? there are some support groups in Columbia, Mo and Kansas City, Mo. both are about an hour away from us. The closest neurologist who specialize in movement disorders are also in Columbia and KC. this makes it difficult to find enough help sometimes. I do not feel like I am educated enough or have the time to start a support group by myself. I am 44 and I have a daughter who is only 3, and my mother who is 75 and has PD lives with us. I am very busy watching those two, who rarely stay in one place long enough for me to have much of a break. I am very frustrated at times and most definatley depressed, and lonely, and mentally and physical exhausted most of the time. No one will come over and give me a break, or take mom to their home for a day. My siblings do not even come to see her, nor do her siblings and relatives. I have to ask her church family and friends to come and see her or take her to do something. It doesn't seem fair that mom has to go through this because she has always helped others and taken care of many people in her life. She does not deserve to have to struggle so much and for everyone to just forget about her. i am so disappointed in the people i thought were so close to us. i have no one to talk to about all of these things and no support except my boyfriend and my 2 teenage sons. i feel very overwhelmed and under-qualified. i am also ashamed to say that i am irritated by my mother because she will not try to be safe, and constantly does things she should not, and if i leave the house she wants me back home asap, and if i have company she complains, and she tries to but in the middle of my personal affairs and my disclipine of my kids, and she makes up stories or facts to try to get me to do what she wants, and she rushes me when i am getting ready by going to the car 15 min early by herself or taking my daughter out with her, and she wont use her walker, and she wont wear a pull up at night and she is cold all the time while i am hot all the time and she forgets the simplist things like how to turn on the tv, or what cabinet the cups are in, or where her glasses or hearing aid or toothbrush are, or that her phone will tell her the date and time, or that she has a bell or whistle beside her to call us for help. I have spent many days stressed to the max, or emotional and crying, or angry that i have no life, and my house is so cluttered with boxes of her stuff that i never have time to go through, and wonder how i will ever be able to make everyone in this home happy and take care of them all and spend enough time w each of them. Well, the answer is never!! At this moment i feel very unhappy and like it will never get better and i will continue to feel like a failure, and resent not being able to do anything with friends or have quality time with my boyfriend/life partner. What do i do? if mom goes to a nursing home i will feel guilty but if she stays here i may end up having a nervous breakdown. sometimes i just have to leave once everyone else is home from school and work, and drive around for awhile by myself. Mom usually calls and says i better get back home soon..! AAAAAaaahhhhhh!!!
     
    avatar
    Dave Balch responded:
    I feel your pain - your description of the situation really hit home with me.

    The main thing I see is that you need to take better care of yourself in order to deal with this very difficult situation. If you have the nervous breakdown that you fear, that won't be good for anyone. Who would take care of YOU? Who would take care of your kids? Who would take care of your mother?? I would offer the following suggestions:

    1. Try to find online support groups. I know there are such groups for cancer-related caregiving; I can't imagine that there aren't any for PD.

    2. See a therapist. Some people feel that this is shameful for some reason, but that is a big mistake. Your insurance may pay for it or at least part of it. It did wonders to help me deal with the stressors and feel better and calmer about my situation. It will help you stand up for yourself which is very hard, I know, and it will also help with your feelings of guilt and annoyance with your mother.

    3. It's great that you take time to drive around a while by yourself - congratulations on doing this! Go one step further and set up a regular schedule for "you-time." Make arrangements for someone to cover for you while you're gone. Can your teens do it? Take your cell phone so you'll still be available in an emergency, but lay down the law that it can only be used "if something is bleeding or burning." These times are not negotiable... if anyone doesn't like it that has to be their problem, not yours. Knowing these times are coming will give you energy by having something to look forward to. You can't be a good caregiver if you don't take time for yourself... "Put on your own oxygen mask before helping others with theirs."

    4. Schedule some exercise for yourself, even if it's a walk every morning at, say, 7:00am. 30-minutes (about a mile and a half) should do the trick. I am lucky enough to have a group to walk with which helps me keep on schedule. I guess you could say this is part of your "you-time" but should be IN ADDITION to the scheduled "you-time" that I suggested in item 3 above.

    5. Treat yourself to something (or things) that will soothe you. A mani-pedi? A massage? A movie? Use your "you-time" and enjoy yourself. Just the feeling that you treated yourself to something that is just for you will be calming.

    6. Can you have lunch with some friends once a week? Once a month?

    I wish you the best - look up in the stands and you'll see me rooting for you!


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