Tribe Feed Forums 2023 Insight Summit Robyn Higgins – Personal Parkinson’s story

  • Melissa McConaghy

    Administrator
    11/04/2023 at 9:10 am

    Welcome everyone to this presentation. Please post your questions and comments here and we will forward them to Robyn. Check back for your response!

    • Peter Dall

      Member
      11/04/2023 at 11:41 am

      Hi Melissa, I would appreciate it if you could forward this to Robyn Higgins- Hi Robyn congratulations on taking charge of your Parkinsons. My voice is becoming a problem. I would be interested in the details of your voice exercises you do first thing in the morning. I feel I know you from a series of Zoom sessions I have been involved with – maybe a University research project; Dance online or Singing on line. I have included a photo. I am wearing a green top celebrating my 77th!!! I can’t match your 3 hrs of daily exercise. I religiously do 1/2 hr of PD Warrior Exercises every day ( I did the PD Warrior Program about 3 yrs ago). Next week I start the 10 week challenge as I have been watching Jason’s coaching videos and feel I have lost the original vigour. Enjoy your grandchildren. Regards Peter Dall

      • Robyn Higgins

        Member
        11/04/2023 at 9:29 pm

        Hi Peter,

        Great that you are doing something every day. I’m 10 yrs younger than you so hope to keep up the motivation that you have by the time I’m your age.

        I have done Dance for PD with Katrina and Erica Rose online and I’m in the monthly online Zoom Support Group organised through Melissa. I’ve also been in the Global PD choir held each year by Parkinson Voice Project.

        See online daily speech exercises with Samantha Elandary at

        Parkinsonvoiceproject.org

  • Debra Millegan

    Member
    11/04/2023 at 10:30 am

    I really enjoyed the interview and inspiration. Thank you!

    • Robyn Higgins

      Member
      11/04/2023 at 4:47 pm

      Thank you, Debra.

    • Julie Butler

      Member
      11/04/2023 at 6:35 pm

      Great interview Debra 🥰. I too was diagnosed on my 62nd birthday ! And like you I have thrown myself into exercising and keeping as fit as I can…. You are an inspiration…

      Watching you from UK , have a great day

  • Eveline Campbell

    Member
    11/04/2023 at 10:41 am

    Robyn is very inspiring! Thank you Eveline

    • Robyn Higgins

      Member
      11/04/2023 at 4:48 pm

      I hope you got something out of it, even if to share with others 🙂

  • Rhondda Kingston

    Member
    11/04/2023 at 11:14 am

    Thank you, Robyn and Jason. Very encouraging.

  • Dawn Smith

    Member
    11/04/2023 at 11:15 am

    Great inspiration

  • Mary Sulikowski

    Member
    11/04/2023 at 11:31 am

    THANK YOU SO MUCH, Melissa

    You touched on so many things. Your a great inspiration and I am very interested in the voice exercises that you do daily. Wishing you all the very best. Mary

    • Robyn Higgins

      Member
      11/04/2023 at 5:02 pm

      Hi Mary

      The voice exercises are daily online practice with Samantha Elandary from Parkinson Voice Project.

      SHE is inspirational!

      It is recommended to use these exercises as follow up to the Speak Out! speech therapy program which is accessed through Speak Out! trained provider.

      See their website for providers. It also has a section called Parkinson’s Lecture Series and Samantha does a monthly About Parkinson’s Webinar on top of that.

      ParkinsonVoiceProject.org

      It has helped me tremendously and shows how living with intent is crucial to PWP.

  • Jill Webb

    Member
    11/04/2023 at 11:37 am

    Well done Robyn – 3 hours a day!!!! Now, there’s a challenge for us all.

    • Robyn Higgins

      Member
      11/04/2023 at 5:06 pm

      Hi Jill

      It’s not that difficult when it’s the main focus of your day.

      Managing PD is my new unpaid job, not financially rewarding, but rewarding in a different way.

  • Mary Sulikowski

    Member
    11/04/2023 at 11:40 am

    THANK YOU SO MUCH, ROBYN HIGGINS

    Your inspiration is ENORMOUS. Mary

  • Shirley Wainwright

    Member
    11/04/2023 at 11:41 am

    What an inspiration. Will certainly be following up!

  • Suze

    Member
    11/04/2023 at 12:45 pm

    Robyn,

    I very much enjoyed hearing your perspective. You mentioned something about red light therapy. I haven’t heard about this. Can you explain it, or perhaps provide a resource link or website on this?

    Thanks!

    • Robyn Higgins

      Member
      11/04/2023 at 5:32 pm

      Hi Suze

      Thank you.

      Photobiomodulation studies have shown that it improves neuronal function, promotes cell regeneration and reduces pain and inflammation. I was inspired by hearing a man, Robert, who after using his own home made device, lost his tremor, regained his sense of smell and lostsome anxiety.

      There are several devices that can be used for red light therapy.

      I have a commercially produced headset called Vielight. It does not come cheap but there ae other less expensive options.

      vielight.com

      If you read up about photobiomodulation you can decide whether or not you want to pursue getting a device.

      PS It’s not something you use walking down the street, best done in the privacy of your own home.😆

      • Suze

        Member
        12/04/2023 at 1:18 pm

        Thanks. I will look into it.

  • Elaynor Wong

    Member
    11/04/2023 at 1:52 pm

    Thank you for your openness Robyn. Very enlightening. I thought I was pretty good at doing exercises but you are exceptional! I’m also keen to get some details on the Parkinsons voice project you mentioned. My voice is getting softer and I am finding it hard to project my voice. Is there someone you could recommend please? Wishing you all the best going forward. Kind Regards, Elaynor Wong

    • Robyn Higgins

      Member
      11/04/2023 at 5:42 pm

      Thanks Elaynor.

      Samantha Elanadary is online out of Texas, Daily practice takes 30 minutes.

      I have been with Parkinson Voice Project since 2019 and am amazed at how effective the program is.

      The people there are all dedicated to maintaining the speech and swallowing capabilities of PWP globally.

      Further information.

      It is recommended to use the exercises as follow up to the Speak Out! speech therapy program which is accessed through a Speak Out! trained provider.

      See their website for providers. It also has a section called Parkinson’s Lecture Series and Samantha does a monthly About Parkinson’s Webinar on top of that.

      ParkinsonVoiceProject.org

      • Elaynor Wong

        Member
        16/05/2023 at 7:41 pm

        Thanks so much Robyn. Will look into it. All the best 🙂

  • Felicity Torr

    Member
    11/04/2023 at 2:11 pm

    Thanks for sharing. Could you please tell me more about recording symptoms using Laurie M ?

    • Robyn Higgins

      Member
      11/04/2023 at 9:30 pm

      Hi Felicity

      I have time tomorrow to respond.

      It’s been a busy day.

    • Robyn Higgins

      Member
      12/04/2023 at 9:28 am

      The ProPD chart has been modified by my husband to enable weekly recording of the following

      Meds

      Activities

      Exercise equipment

      Supplements

      Symptoms

      The 30 or so most common symotoms are rated as either

      not experienced 0, no points

      have had it but is managed and no longer presenting as a problem 1 point

      eg constipation

      Mild 25 points

      Moderate 50 points

      Severe 75 points

      Very Severe 100 points

      Those points are calculated to give a weekly total which goes into a chart to give an overall picture of impact of symptoms.It’s about watching progression and comparing with the common rates as indicated on Pro PD

      We have noticed that vacation times my score increases until I return to normal routine….or look at meds, perhaps

      We can look at what I’ve been doing to judge why and what changes need to be the target for the upcoming weeks to try to get ot to a 1 point.

      It helps over time to remember and is useful for informing the neurologist.

      Xx

      • Debbie Bourke

        Member
        15/04/2023 at 1:15 am

        Hi Robyn

        I listened with interest on how you monitor your symptoms. I was pleased to see that some others were keen to hear more too. After reading your replies I started reading some articles on ProPD and found they have developed an app for iphone and ipad users called Parkinsons Symptom Tracker. I was wondering if this is what your husband modified, or this is new to you? Or have any others used this app yet?

        I am tempted to use a combination of the app and a modified written one.

        I was actually diagnosed just over a month ago, and I’m 56 years young. Just recently finished the 10 week challenge and like Susie Black I want to be able to teach my children and my two very young (2yrs & 7 weeks) grandchildren how to handle adversity and be an inspiration to them by doing all I can to remain positive in my life and to improve the quality of my future life.

        Debbie

        • Robyn Higgins

          Member
          15/04/2023 at 8:23 am

          Hi Debbie

          Yes, I know about the app but my husband modified the concept a while ago and it is working well. So, no need to change it.

          It is useful to have it from the beginning, which is where you’re at. So many symptoms can be overlooked, disregarded or even unknown as a symptom until you are alerted. It is eady fir tome to go by and firget what haopened when so its a very useful monitoring tool.

          Laurie Mischley has a fantastic opportunity for information. It is Parkinson’s School. It costs but is worth it.

          https://pd-school.teachable.com

          Where are you located?

          • Debbie Bourke

            Member
            15/04/2023 at 9:43 am

            Thank you for your reply Robyn

            I am situated in Donnybrook Western Australia where you are originally from (WA) that is .

            I have downloaded the app and I’ll see how it goes . I have just changed neurologist to improve my support team .

            I’m a member of PD plus so I can keep up to date with info .

            Have a great day and thank you again for your insight

            Debbie

            • Robyn Higgins

              Member
              15/04/2023 at 9:48 am

              Great. I love the Apple Festival there.

              The reason I asked was that, being in Australia, have you considered applying for NDIS?

              That is what enables me to do three hours a day of exercise.

  • Mavis Reeder

    Member
    11/04/2023 at 2:21 pm

    Goodness this such an inspiring talk! Thank you both so much for this positivity today.

  • Tiana Della-Putta

    Member
    11/04/2023 at 3:33 pm

    Terrific! Thank you Robyn for such a positive approach and a creative and inspirational exercise program. Can you say a bit more about how you use the ProPD you mentioned?

    Many thanks,

    Tiana

    • Robyn Higgins

      Member
      11/04/2023 at 9:32 pm

      Hi Tiana

      I’ll message you soon. It’s a bit complicated.

      • Robyn Higgins

        Member
        12/04/2023 at 11:06 am

        Hi again Tianna

        The question was also asked earlier.

        My response….

        The ProPD chart has been modified by my husband to enable weekly recording of the following

        Meds

        Activities

        Exercise equipment

        Supplements

        Symptoms

        The 30 or so most common symotoms are rated as either

        not experienced 0, no points

        have had it but is managed and no longer presenting as a problem 1 point

        eg constipation

        Mild 25 points

        Moderate 50 points

        Severe 75 points

        Very Severe 100 points

        Those points are calculated to give a weekly total which goes into a chart to give an overall picture of impact of symptoms.It’s about watching progression and comparing with the common rates as indicated on Pro PD

        We have noticed that vacation times my score increases until I return to normal routine….or look at meds, perhaps

        We can look at what I’ve been doing to judge why and what changes need to be the target for the upcoming weeks to try to get it to a 1 point.

        It helps over time to remember and is useful for informing the neurologist.

        Xx

    • Dr Laurie Mischley

      Member
      15/04/2024 at 7:23 am

      http://www.pd-symptoms.com describes the Parkinson Symptom Tracking (PRO-PD) app in detail.

      I created the tool as a patient-centered outcome measure, and it turns out it’s especially useful for for monitoring rate and severity early in the disease, when subjective symptoms often dominate.

      The app is free on iOS and Android phones and tablets. Hope you find it useful!

  • Bronwyn Curtis

    Member
    11/04/2023 at 3:55 pm

    Thank you . Your positive attitude is an inspiration.

    • Robyn Higgins

      Member
      11/04/2023 at 9:30 pm

      😀😀

      • Ian Edgar

        Member
        12/04/2023 at 10:25 am

        Hi Robyn,

        I enjoyed your presentation. I was particularly interested in the voice training. I did the intensive course of 40 one on one sessions and found it a great benefit but I am afraid I have let it slip. Do you use the EMST and how do you find it? I was particularly interested in the fact that you were a teacher. I do calligraphy as a hobby and also art (pastel). I had never experienced micrographia until it suddenly caught up with me without warning. I have discovered that I am able to manage it by drawing heavy black lines on the paper to use as guidelines. I am 82 and was diagnosed in 2011.

        Ian

        • Robyn Higgins

          Member
          12/04/2023 at 11:04 am

          Hi Ian

          I found to overcome handwriting issues that printing (as in not using cursive) is very effective as it is stop and start. Cursive writing encourages flow which becomes out of control. Luckily there’s little use for handwriting as such these days, (I’ve done calligraphy too and currently do art classes for my fine motor and creativity) except for signing documents or personalising greeting cards.

          I don’t use an EMST but have found strength in my throat, stomach and voice through the speech exercises and using a Doctor Vox Pocket Vox daily. I sing along to songs on the radio whilst driving using the DR Vox

          https://doctorvox.us/

          Keep on keeping on!

          Robyn

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