This topic contains 23 replies, has 9 voices, and was last updated by  Jean Mellano 1 month, 2 weeks ago.

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  • #14580
     Ally 
    Keymaster

    It’s been awhile since we’ve done a general check in with the community and I’m curious – why did you join this forum? How did you find us and what are you looking for? Is there anything we could be doing to improve your experience? Don’t be shy — Jean and I want to hear from you!

  • #14581
     Marcus Sutherland 
    Participant

    Being a part of a group who understands what I’m going through means a lot to me. I came across this forum by searching for Parkinson’s news. I love the news stories posted every day. I love to learn new things and keep my mind busy.

    • #14584
       Jean Mellano 
      Keymaster

      Marcus, there is great comfort in knowing we are not alone in what we experience with PD.  I believe your positive attitude will go a long way in helping you battle this disease.

      • #14978
         Jean Mellano 
        Keymaster

        Amelie. Thank YOU for taking the time to respond and for reading our articles.

    • #14605
       Ally 
      Keymaster

      Awesome. Thanks for sharing, Marcus, and thanks for being part of this forum community! Outside of Parkinson’s disease, what are some of your other favourite topics to learn about?

  • #14611
     Marcus Sutherland 
    Participant

    Recently it’s been all about brain and body health, supplements and foods that boost dopamine levels. Also started to study Spanish as a second language. And learning to draw not very good yet.

    • #14635
       Ally 
      Keymaster

      Sounds like your group covers a wide variety of topics and interests! That’s great!

  • #14623
     Lou Hevly 
    Participant

    I joined as a result of reading some of Jean’s articles on the Parkinson’s News Today Daily Digest. Also I’m here to learn and to help others in any way I can.

    • #14624
       Jean Mellano 
      Keymaster

      Lou, thank you for reading my articles.

       

      Your input to this forum is  valued.

    • #14636
       Ally 
      Keymaster

      Jean is an awesome writer, I’m not surprised that led you here! Great to have you, Lou.

  • #14703
     Claudio 
    Participant

    I joined this forum, because I think that sharing experiences about PD may be helpful in coping with the disease. PD, the poor release of dopamine, is a matter of brain. I wouldn’t be surprised if, sharing experiences, habits, info, tricks, one day someone finds out a way – an exercise, a trick, a behaviour – to make brain release dopamine apart from the substantia nigra. I experience sometime a lack of symptoms even without drugs and in that case I question myself on the cause of that welcome event… I then track what I did in the past hours: exercise? manual tasks? brain tasks? listening to the music? dancing? sex? restful sleep? any not routinary task? I still haven’t find the correct link… I’m still chasing it and I hope to find an answer may be reading a post right here in this forum! Thanks you all for being here!

    • #14704
       Jean Mellano 
      Keymaster

      claudio, i look forward to your post when you figure it out 🙂

  • #14976
     Amelie 
    Participant

    I feel less alone reading all the articles, advises from all of you.  Thank you for the sharing.

  • #15211
     Avril 
    Participant

    Husband was diagnosed in December , though we had already guessed that it was Parkinson’s . He’s had CLL (Leukaemia) for nine years which has been well under control for last 3 years with Ibrutinib .  Our problem is when he gets new symptoms we don’t know if we are dealing with the leukaemia or the Parkinson’s.  The Parkinson drugs have been a bit hit and miss having tried patches and Rasagiline tablets which left him very spaced out and “muzzy headed”. He’s now on Sinemet but we haven’t seen much improvement, maybe we just are not giving the treatments long enough to work?.

    After being so lucky with the Ibrutinib I think we were expecting the Parkinson drugs to also be “wonder drugs” and are both disappointed with the back up help from the Parkinson nurse, it’s been a case of us finding alternative treatments and asking if we can try them! My daughter suggested this forum so we don’t feel so alone and unsupported.

    • #15212
       Ally 
      Keymaster

      Hi Avril, we’re glad you’re here and we hope you do find some support to help you and your husband on this difficult journey. It sounds like you two have been through a lot in the last decade. I hope that as a caregiver you are taking time to care for yourself, too. What kinds of things do you enjoy doing that make you feel happy, relaxed and/or re-energized? Where do you and your husband live? I’m sorry to hear you’ve had a rough go with the PD nurses too … Do you have any other options for that kind of care where you live?

    • #15216
       Lou Hevly 
      Participant

      Hi Avril, what you’re experiencing with the effectiveness of Parkinson medications is normal. Every case is different and even the best doctors can only prescribe for patients on a trial and error basis.

      Sinemet is the “gold standard” of Parkinson’s treatment. The normal beginning dosage is a tablet (25/100) 3 times a day. What are the main symptoms your husband is experiencing? Which are the most bothersome?

      For a very moving and useful view of PD and its progression, my advice is to read Jean Mellano’s articles “Slow is the New Fast”, which you’ll find here (the oldest first):
      https://parkinsonsnewstoday.com/category/slow-is-the-new-fast-a-column-by-jean-mellano/page/3/
      https://parkinsonsnewstoday.com/category/slow-is-the-new-fast-a-column-by-jean-mellano/page/2/
      https://parkinsonsnewstoday.com/category/slow-is-the-new-fast-a-column-by-jean-mellano/

      They’re dated, so it’s easy to find the oldest and then just read them through, in order. I’ve had PD (either mine is a mild version or all the off-the-wall supplements I’ve been taking are actually effective) for 4 years and have spent many hours online reading up on it. In my opinion, Ms Mellano’s blog is the best place to go for a compassionate, comprehensive view.

      All the best, and may God bless you,
      Lou

  • #15281
     Robert 
    Participant

    Howdy folks.

    I appreciate you letting me join your forum.  I was diagnosed with Parkinsonism a year ago May.  That movement disorders doctor said I am certainly stiff and slow but it’s early so come back in a year or so.  Second opinion three months later said something about about HY Stage 3!  Third opinion said nontremor likely PD, HY Stage 2.5.  (I guess I believe them.  For the couple minutes each day that I feel “normal”, I sometimes wonder).   So I was started on the routine 3xday Sinemet.  Six months later we just tripled the dosage and timing of the Sinemet to see if that helps. (Tell me again when we are supposed to eat?)  My diagnosis is still labeled Parkinsonim, likely IPD.   Things seem to be progressing a bit quicker than I thought they would   I thought I had selected the slow and steady version of PD when they gave me that PD menu!  So I have joined the forum to see if I really am just another of the apparently one million unique and different variations of Parkinson’s.  I suspect I am.  I am quiet by nature and may not post much at all, but do know that I appreciate being able to see what you not so quiet types have to say and what you have experienced.  I am 65 and continue to work full time.  I had planned to work until 70.  I have told my wife that I don’t feel ill.  I just feel really really weird most of the time!  The best phrase of where I am is something I read in my internet search.  It is that I am now missing “the anticipatory readiness to react”.   It was like I just woke up one day and it was gone.  Your forum has a very good tone.  My attitude is similar I think.  Things are what they are.  Let’s figure out how to be very smart about how to make the best of it.  Again I appreciate you letting me be able to share in our travel down this very interesting turn we seem to have all taken in our life journeys.   Do know that all your sharing is really helpful and appreciated.

    Robert

  • #15283
     Robert 
    Participant

    Howdy again.

    FYI for you wise old timers who probably have quick questions about my story.  One of the my two second opinions did mention that three word phrase, which will not be spoken aloud, that begins with the letter M, as something to consider. But that did not seem obvious to the other two Drs and an MRI did not show that as obvious for now.  We are going ahead under the presumption that that is not what is happening to me.  I do have an abnormal DATscan so I guess I am convinced this is not just normal aging and that I really do have dopamine “issues”.  And now my Dr. and I are having fun recently working on figuring out how to deal with stiffness and pain and low BP issues and interesting “plumbing” issues.

    I understand my latest treatment plan is:

    A lot more of the magic pills and more often for this and a then a couple of different magic pills for that and now another pill for this other thing that has decided to visit you that is a side effect of that other pill that I gave you more of  for the first this and that is also, similarly, a side effect of this other pill that I gave you for the first that!  And then lets have a follow up visit soon to see if what I am having you do for this this and this that and that that and that that are working.

    This has made me dizzy.  But I cannot tell my Dr. about that.  Because I do not want to be prescribed another pill for that this too!

    I suppose I am not the first to notice that they no longer bother to ask who I am when I go to my pharmacy.

    Robert

  • #15287
     Jean Mellano 
    Keymaster

    Hi robert. Thnx for sharing your thoughts.  I am glad to see u have a sense of humor, it will serve you well on your pd journey.  I can appreciate what you say about all the pills. My doc knows better than to suggest another pill for me.  I hate drugs but I do take the carbidopa/levodopa. I am still trying to figure out if I am over medicated or under medicated. I fell horrible on the meds and really horrible off the meds.  I think exercise is the best thing for me, however, the fatigue I suffer can be almost debilitating sometimes.   As you noted in so many words, pd is different in everyone and we all react differently to different treatments.  Hang in there ….

  • #15289
     Robert 
    Participant

    Thanks Jean.  I cannot even begin to imagine what it was like before the miracle drug carbidopa/levodopa.

     

  • #15390
     laura seymour 
    Participant

    I joined because I was told (1 week ago) that I have PD and I wanted to learn about it. I saw the list of forums in the Parkinson’s News. My husband is joining the care-givers forum. We both have a lot of questions about what’s in store for us.

    • #15393
       Ally 
      Keymaster

      Welcome, Laura! We’re glad you’re here. We hope you and your husband will find lots of helpful information and support in these forums. Please reach out to me or Jean (the co-moderators) if you have any questions. 🙂

      • #15400
         laura seymour 
        Participant

        Thanks, Ally! I really appreciate your help! I do have loads of questions, but right now I’m concerned about the pain I have been reading about. I know PD is different for everyone, but I just would like some idea of what might occur. If you can give me some general idea about the pain, I would really appreciate it! The only thing I know about PD is the tremors and a shaky sense of balance. I just want to be prepared to face what may be in my future. Thanks so much!
        take care,
        laura

      • #15409
         Jean Mellano 
        Keymaster

        luckily, pain is NOT a symptom for me…

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