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    • #24791
      Mary Beth Skylis
      Moderator

      Since my dad was diagnosed with Parkinson’s, I’ve noticed that everyone copes a little differently. I like to learn about the science of PD and what we might expect. Dad focuses on finding ways to stay healthy. But it can be difficult for some of us to look at the potential realities of having Parkinson’s. 

      Are you someone who likes to research Parkinson’s disease? Or do you prefer to take it day by day?



    • #25035
      Toni Shapiro
      Participant

      Hi Mary Beth,

      I like to do research.  It helps to make me feel like I am doing something to help myself.  Knowledge is power and I often feel powerless.  Just when I think I know almost everything about Parkinson’s 😂I learn something else.  It is particularly helpful when researching symptoms that are not well reported or when I come across something that is related to Parkinson’s that I was unaware of.

      • #25075
        Bill Keller
        Participant

        I believe there are disease modifying treatments that exist today and it is up to us to find them and advocate making them available to us.  Waiting for the PD machinery to come forward with those treatments through conventional channels is a losing proposition.   The PD machinery is all about earlier detection so patients can be started on symptom relief medicine sooner.  The insurance companies harass PwP into settling for cheaper outdated medicines and the big non-profits are seeking perpetuation and constantly badger us with “we’re all in this together” messaging while trying to get us to donate money to them.
        <div>Through combing the internet,  I am encouraged by what I am finding in recent months.   There seems to be a fair number of research efforts underway that are identifying ways to clean out misfolded alpha synuclein proteins from polluted  dopaminergic cells.  Many of these investigations involve treatments that exist today for treating other conditions.  If we can slow or stop our disease progression, we have won half the battle.</div>
        <div></div>
        <div>The other half is reversing the damage done to our brains by PD.  It feels to me that this piece of the puzzle is a little further out, but I am equally optimistic that it is coming.</div>
        <div></div>
        <div>I was diagnosed over 20 years ago and have tried almost every medicine used in the   treatment of PD symptoms.  And I am encouraged by what I am learnings and very excited to be done with medications that are little more than lipstick for the Sinemet pig!</div>
        <div></div>
        <div>So I guess I am someone who likes to research disease :-)</div>

    • #25037
      Krukar
      Participant

      Hi Mary Beth,

      As a  person with this condition I can’t help but acquire some knowledge  about Parkinson’s, in fact I am an expert in coping. What I must do to make my situation palatable is exercise like a demon. Rather than think about my misfortune I choose to work it out daily. It also helps the time to pass. My wife and I are walking buddies. We await a cure but until then at 65 I am staying ready. Blessings, Mike

       

       

       

       

       

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    • #25039
      Ravindra Kango
      Participant

      I am facing PD for past 10 years.

      I relied solely on modern western medicines until I became aware of their side effects, the progression of the disease. After exploring hundreds of material on the internet, I was convinced that although hundreds of research projects are going on worldwide but nothing worth hopeful will be available to the patients in the near foreseeable timelines.t

      But I am not going to give up. At least 1 or 2 days in a week I keep exploring alternative and supplementary therapies on internet and other sources and try whatever appears to make sense, viable, not risky and most importantly affordable to an average retired person.

      Since every PD patient is considered a unique case, causes could be different, there may not be one solution that works for all. Hence I think we all need to keep trying.

    • #25041
      Denise
      Participant

      When I was first diagnosed I read all the things about PD, articles, stories, blogs and all things PD but now I just read things that interest me, I am 82 and I don’t think that there will be a big change possibly in my lifetime and as progression is not known I do things to stay reasonably healthy and live each day as it comes.

    • #25042
      Sherman Paskett
      Participant

      Yes, I need to learn about this disease because I have to live with it. I need to develop coping strategies for each new nuance I encounter. Part of that effort is to learn how others cope.

      As others have said, I have no hope for a cure, I do not even want a cure at this point. I have to preserve what I have left and cope with the loss.

      But as for research, there is a dearth of relevant, understandable material for the long-termer. There is plenty of high level info for the newly diagnosed. There is some good info for caregivers but I see little that deals with what the one they care for is experiencing while the caregiver tries to cope with their own personal loss.

      For the Parky with 10 to 20 years under his or her belt, though, I find nothing.

      • #25044
        Susan Swint
        Participant

        Six years after being diagnosed with Parkinson’s and age 79, I still regularly read journeywithparkinsons.com and scienceofparkinsons.com , both by former biochemical researchers in the fields of protein chemistry or PD, one of whom has PD himself. They seem quite clearly written for the layman while being quite accurate. At around 30 years from bench to prescription, I do not expect to see a cure myself, but have felt I could contribute by participation in clinical trials. Otherwise, I watch the internet for sensible information about exercise, coping skills, and diet (line dancing has been great for speed of movement and brain/body coordination). And I think spreading the word widely about early symptoms and early diagnosis are exceptionally important now that possible slowing of disease progress is on the horizon.

    • #25046
      William Palmer
      Participant

      Yes, I keep up with daily PD information sources like Parkinson’s News Today. Sometimes I feel overwhelmed with information–as if I have eaten too much. Researching can be addictive and can interfere with daily enjoyment of life. I’m trying to find a balance.

    • #25050
      Troy
      Participant

      I like to research. A few times I’ve read about something that a few months later I found myself experiencing. The more I know, the more comfortable I feel. I don’t overshare with my family though; they want to take things day by day and so I understand and respect that. A positive aspect of EOPD is that I feel like I’m able to plan/prepare for the future.

      • #25063
        Ally
        Keymaster

        Hi Troy, great point about respecting how often other people might want to receive information. Everyone copes differently and what works for one person may not work for their loved one. Thanks for sharing your perspective.

    • #25056
      Judy Cimala
      Participant

      My husband was diagnosed a year ago. He doesn’t research anything about it. I do every day. I want to be informed any way I can. There is a lot of encouraging articles about people that are fighting it and making each day count. That encourages me. The articles about people having such difficult times are hard to read. Sometimes I have to back off reading those for awhile. But no one with PD know what is ahead. Things can change so fast. My prayers are with everyone who is struggling with this disease.

      • #25062
        Ally
        Keymaster

        Judy, you and I are alike in that we like to be as informed as possible, even if it’s troubling information. Thank you for the wise and kind reminder to take breaks from consuming information when it becomes overwhelming or challenging to read. <3

    • #25058
      Ken Aidekman
      Participant

      I enjoyed learning about research on the brain when I was in college. It came in handy when I learned my dad was diagnosed in 1975 and his father had PD before him. Now it’s three generations and counting.

      I read what comes into my mailbox and that’s plenty. Today I turned 70 and still want to (and must) learn as much as I can. But, my poor memory and cognitive chalenges make this more difficult than it used to be.

      The brain is the most fascinating thing in the universe. If you have PD all the more reason to keep up with neuroscience research.

    • #25074
      Gregg I Daniels
      Participant

      I guess I would say that I am both, a researcher and someone who takes it day by day.  50 years ago I got my degree in physiology and psychology, known as neuroscience these days.  I am still curious about this science and others as well.  So I have kept up as best I can by taking online courses from MIT and other colleges.  So I tend to read and at least mostly understand the detailed research papers.  I also have participated in some online PD studies.  My takeaway at this point is that there will not be a cure in my lifetime (age 72, PD for past 11 years) although there may be something on the horizon to slow the progression, assuming the FDA will approve anything in time.  I am fortunate that my symptoms to date have been relatively mild and were improved by DBS.  Also, very fortunate to have had a great neurosurgeon for the DBS and a great neurologist for follow up programming and monitoring possible disease progression.  The one thing that helps me the most and is pretty well documented by research is EXERCISE.  Also, a good balanced diet of fruit, vegetables and protein.  I should mention that my primary care doctor preaches this to me every time I see her for whatever reason. I see exercise and diet as two things that I can control to a large degree and the data supports that these two things do slow the progression.  Intense exercise is best if your condition allows it but anything is better that nothing.   My favorites are mountain biking and dirt biking together with weight training and some other type of cardio in the winter months.  Yoga (my wife is an instructor) is also great but I admit she has to force me to do it!

    • #25094
      Bart Salop
      Participant

      I read something almost every day. I’m 79. My Dad was Diagnosed at 50 in 1960 before LEva Dopa. He was actually one of the many test patients. My Mother found a Dr at St Barnabas hospital in the Bronx near the Zoo.Dr Joel Cooper. he di 2 surgeries on my Dad. he used liquid Nitrogen to freeze the affected parts blocking the Dopamine. First surgery for his left side worked with good results. stopped the tremor. stopped the freeze while walking. in a few months after the first surgery LDopa started testing. instead of waiting for Dopa the decision was made to operate again for his right side symptoms. that surgery ruined what ever good he had left in his life. could hardly talk. total depression. horrible involuntary movement. He then started the LevaDopa test. it helped some but the 2nd surgery ruined his life. I was diagnosed 2018. symptoms started 2015. My symptoms are liteheaded feeling and terrible fatigue. My wife and I being familiar with the disease and have some experience with doing recreational Drugs years ago we are staying a little bit ahead of the fatigue with Modofinilo and Vit B1 and of course LevaDopa. I consider myself a Very Lucky Person with PD and am grateful for all my days. Even the Off days where i sleep all day.

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