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  • Are you part of a Parkinson’s support group?

    Posted by mary-beth-skylis on October 10, 2022 at 12:06 pm

    Recently, I’ve seen a fair amount of interest in Parkinson’s support groups. It seems like there’s a big push for those in the community to connect. And I’ve been curious about your interest and resources. 

    Are you a part of a Parkinson’s support group? If so, what are you enjoying most about it? If not, are you interested in joining a group? Or do you know of support group resources?



    valtiree replied 1 year, 5 months ago 5 Members · 5 Replies
  • 5 Replies
  • krukar

    Member
    October 10, 2022 at 5:52 pm

    Hi Mary Beth,

    I meet weekly with 2 different guy with Parkinson’s.

    I have breakfast with Dan weekly , then lunch with Tom on a different  day. We talk about lots of things besides Parkinson’s. The friendships are good. There has been some discussion about starting a Parkinson’s support group because one does not really exist in Sedona. I will keep you posted. Blessings, Mike

     

     

     

     

     

     

     

  • ken-aidekman

    Member
    October 11, 2022 at 4:12 pm

    Yes, I participate in a support group. Thirty-five years ago there were a lot fewer support groups. Awareness about PD and its symptoms was quite low. At the same time lot’s of research and new medications were available and pwp’s needed that information to share. We used to call it an “invisible” disease. Many people were not aware of the value of support groups even if they might be near one where others were getting help.

    I enjoy my support group mostly for the speakers they bring in to talk about various subjects regarding PD. A lot of friends have been made over time because people with PD generally feel comfortable talking with others with PD.

    Support Groups are not all roses. Young-onset PWPs are often depressed by the shape other members are in after many years of having it. Also, many in the group are taken there by care partners who may vent about what a burden it is on them to take care of their loved one. Still, given the choice of isolation versus reacting with a community I’ll take the later every time. It is vitally important for us to stay active within our group of friends or make new ones because we are social beings and isolation is not good for our health.

  • pamela78702

    Member
    October 11, 2022 at 6:04 pm

    My husband with PD and I participate in a monthly support group for those with PD.  We enjoy the ideas that are shared by those who face similar issues and are grateful that we don’t have some of the issues that others are struggling with.

    As a care partner, I participate in several care partner support groups (each of them once a month).  I always come away from the sessions knowing that my feelings and struggles are shared by others and with some ideas for addressing current issues and resources for issues we are likely to face in the future.

  • chriseee

    Member
    October 13, 2022 at 4:40 pm

    My husband and I were part of  group that met, can’t remember now if it was once a week or once a month. Is’t been so long since we went.

    At first I enjoyed it. Was given information which helped but after a while my husband lost interest then he had a fall and broke his hip so he ended up in the hospital and then a rehab facility. During that time I corresponded/spoke with the person who was in charge or the group and was asking for help in several areas and it seemed like she wanted to control the situation. We seem to have problems with the communication between her and  myself. I would text her and she would get angry at me when I asked her why she did not reply to my question. Saying well I am very busy. So then Covid came along and  my husbands recovery. So the group was not meeting at all. Tried talking to her on the phone but I just got talked down to and I did not like that since this person was supposed to be a registered psychologist or  psychiatrist.    I never was quite sure which one, or what her qualifications were. Anyway, even if the group is back to meeting I don’t think we would be welcome. Have been looking for others to no avail. And I’m not sure if my husband would want to go anyway since COVID and/or omicron is still infecting us.  Don’t like being in groups of people since we are both seniors and have underlying problems.

     

  • valtiree

    Member
    October 14, 2022 at 1:33 am

    I attend a monthly PD group meeting, sometimes with a neighbour, and find the guest speakers interesting and/or worthwhile. It is good interacting with fellow attendees after the speakers but sometimes I wish I drank tea or coffee as tap water is the only alternative!

  • nsurit

    Member
    October 24, 2022 at 8:16 am

    Doing this on your own is not, in my opinion, the way to go. I live half way between two relative small towns/cities and participate in support groups in each of them. Additionally,  I go to Rock Steady Boxing three days a week and participate in The Loud Crowd, a program of The Parkinson’s Voice Project. Attended a local symposium on Saturday and another in Austin a couple of weeks ago. Parkinson’s will win if I let it, however at 78 years old I’m not planning to give up. I learn from the other PD patients, their caregivers and the various programs sponsored by various groups. The interpersonal connections with others is essential to me. I’m encouraged and inspired by others. Isolating  and not taking advantage of available resources will only lead to a more rapid progression, again in my opinion.  Check out your local association or star one. Get on your computer and see what The Parkinson’s Voice project (parkinsonvoiceproject.org) , Davis Phinney (davisphinneyfoundation.org) Michael J Fox (michaeljfox.org)  others are offering in the way of programs and support.  There are many opportunities to be supported. As Nike says, Just Do It.

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