my question is long so i typed it in the box below:

I have a neurologist I see as needed. My question: What is a Movement Specialist? I have never heard of that before visiting this site. I am recently dx and just started reaching out. Does anyone go to support groups for PD. There is one in my town last sat every month. wanna go, but scared I will break-down. Not sure if I should go. I will ask my psych dr. about it also. tks for answers

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  • I went to a PD group in a nearby town several years ago...my PhysicalTherapist went with me because my husband wasn't able to attend. I found it to be mostly couples...older than myself...and though I m very social and not afraid to share I found mysel listening and wanting to learn what I could about PD. I didn't fel like I felt in so I never went back but I am reconsidering that or may even try to start my own group. I found the group clique' they all seem to know each other or had been in the group for awhile and not welcoming to newcomers...just my opinion...and I found the caregiver of the couples that spoke talked for "them" and not one PD patient spoke which I would have preferred to hear. I think one need to know what they want & need from a support group before jumping in. I have learned more here on this blog in the days I have been here then I have in years!!!!

  • tks, Casey. I don't have a problem speaking up once I get started, in fact I'm very friendly and flexible. Some folks are just the way they are, its not about me. I have a problem with transportation, and have been very independent for all my teen and adult life, so, it is silly pride holding me back from some of the things I need to be doing..I don't like feeling helpless or 'needy' as I have said before. I know I am neither one, but my emotions don't know it. Well, talk to ya again. tks

  • Hi linda/caswy

    I have psp and joined the local PD group 14 months ago

    they r all v friendly go on thier own and are v ;positivie people

    i at 66 am rhe youngest tbut that does not matter

    i can relate to them adn them to me

    despite our circs beign a bit differennt

    only 1 other member the treasurer is into computers so thiis blogging i s good for me

    we do all sorts of acitviitrieis at the group = massage/ TAI CHI sittign down adn making things

    outings are 3 times a year by coach

    so it is wha tyou make of it

    :-)lol JIll ';

  • Linda you have asked a good question.

    My husband has seen many neurologists over the last 15 years. All treat illness that has to do with the human nervous system. That is a huge encompassing group of problems. It include headaches, radiculopathy, neuropathy, stroke, dementia, seizures and epilepsy, Parkinson's Disease, multiple sclerosis, head trauma, sleep disorders, neuromuscular diseases, and

    various infections and tumors of the nervous system.

    If you go on the website for movementdisorders.org you will see that the extra training these MD's have had will better serve your needs.

  • If you look back, you will see that posted a questio about whether to attend Support Groups or not. I think you will find some of the responses very interesting.

    I have not joined a Group at the moment, but have not discounted joining one in the future. I suppose we are all different in what helps us.

  • Thanks for the replies. Very helpful. Court, thanks, but I am new to site and do not know what questions have already been asked. Probably everything I need to know is already on the site as a question/answer, but I would not have asked if I had known that. Guess I need to check out the site more thoroughly before I ask for info. Thanks for your suggestion. I don't know a lot of the terminology associated w/PD, I'm trying. Tks Jillann and moonswife, your info will be helpful.

  • dont worry about re- asking stuff there is always someone who will be happy to help

    take care x

  • right! repetition is reinforcing!!

  • Thanks sasha & PatV. When we join a site like this, it is usually because we do need answers to questions. I'm sure we have all asked questions that have been duplicated many times..the answers aren't always the same..different replies from different responders. I will continue to ask what I don't know. Would like to say that some of the feeds that have been posted about PD have been very helpful as well.

  • Go to the support group. If you break down, they will love & support you. That is why we are in it - for support. God Bless

  • Well there you go..I didn't even know there was a support group, Estelle. Thanks very much. I'll find my way around sooner or later, trouble is, I won't remember which way it was, hahaha..

  • For clarification a Movement Disorder Specilaist is a neurologist who goes on for extra training. They have expertise in PD and other movement disorder diseases.

    My husband won't go to a Support Group meeting but he does go to their educational programs. We have a very active group.

  • Hi Linda!

    Yes, Wifeofparky's description tells you a very important bit about the MDS having additional and specialized training - and preferably with PD Itself. Moreover, here in the states anyway, they must also continue with ongoing education in this field of specialty. It seems that many folks find when transitioning from working with a general neurologist to a PD specialized MDS that the additional insights and understanding of what you're going through dramatically impacts the efficacy with which they help you with your treatment. Personally I thought my first neuro was wonderful and caring, but now that I've got a good MDS on my team the difference is night and day!

    Also, like Shasha said, please do not worry about repeating questions on the blog, we all do that once in a while. And, as the old saying goes, the best way to learn something is to teach it! But if you're eager to read the excellent input found here you might decide to quench your thirst for knowledge quickly by entering the subject matter into the "Search" line in the top right corner on the web site. Often times you'll find a very rich source of info that was previously posted.

    Best wishes,

    Steve (Bisbee, AZ)

  • Thank you all so very much..the info is so helpful. Really not even sure how the site 'works' was just eager to get answers and most of all connect with others. I will give all the suggestions a try. Also, tks for answering my question about Movement Disorder Specialist. Will continue to search..thanks again. Linda in Texas..

  • I go to a support group for Young Onset Parkinson's disease. They are very open to new members, and very helpful. I learned things that even my neurologist did not know. For instance: Crystalized Ginger rubbed on your gums instantly gets rid of nausea when a PD med causes you problems. They often call in guest speakers such as naturopaths, psychologists, psychiatrists, neurologists, pharmacists, physical therapists, speech specialists, etc. I live in the Seattle, WA area and there are about 12 different support groups in the area. If one does not work for you, try another. Also, there appears to be lots of support right here.

  • tks, magicmax. that is great that u have those types of groups to go to. I only know of one in my TX area. don't know when my pcp will set me up another appt w/neurologist, but will ask him about it also. yes there is lots of help right here. I learned so much already in just the short time I've been visiting. I guess I'll probably become a 'regular'. tks again for the reply.