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    • #18659
      Mary Beth Skylis
      Moderator

      As research about Parkinson’s becomes more available, we’re learning all about the disease and how it functions. Every day seems like a school day, while we seek answers. What are some of the things you’ve learned about Parkinson’s since the diagnosis? Have new facts come to light in your search for answers?

    • #19476
      Anthony
      Participant

      I was diagnosed with PD a few months ago, and I consider myself sick for more than 3 years. I came across this forum by chance recently and decided to look for someone with similar symptoms, since it seems to me that this disease is very diverse.
      Therefore, I publish my data:
      age – born in 1958;
      gender – male;
      place of residence – Ontario, Canada;
      limb tremor – absent;
      the leading symptom is loss of balance;
      other noticeable symptoms:
      sleep disturbance (I have difficulty falling asleep),
      loss of short-term memory,
      slowing down (visual) reactions,
      loss of handwriting quality.

      On the recommendation of a doctor, I take 1.5 levo / carbidopa tablets (6 in total per day).
      I apologize for my English – it is not my native language.
      Now I am in search of any means to improve my condition.

    • #19640
      Mary Beth Skylis
      Moderator

      Anthony, your English sounds great to me!

      Thank you for sharing your experience. My Dad was officially diagnosed in 2013, but he thinks that he was experiencing symptoms a long time before his diagnosis. He experiences a loss of balance, sleep disturbance, and tremors, too.

      Have you had any luck finding ways to improve your condition, yet?

      • #20261
        Anthony
        Participant

        Hello,
        I have nothing to compare the rate of development of symptoms. But it seems to me that the speed increased from the beginning of taking the pills. None of what I ingest seems to work. Although I spend more than 40 minutes every 4th day on the treadmill and do push-ups every morning.

    • #19921
      Anonymous
      Inactive

      I was diagnosed 4 years ago but had symptoms for about 8 years. I have early onset tremor dominant. The difference between tremor and non-tremor dominant are interesting to me and how everyone has different rates of progression. I read all the new research daily neurology has become a kind of interest. There’s always something new coming out hope to see a cure in my lifetime.

    • #20244
      Mary Beth Skylis
      Moderator

      I’ve always wondered if the progression and symptoms might have to do with exposure to toxins.

    • #20259
      Jim
      Participant

      <p style=”text-align: center;”>In reflection, I now realize I was symptomatic some 30 years ago that began as mild and have slowly progressed as well as expanded since my diagnosis 6 months ago. The most stressful challenge is finding a medical provider who treats you as an individual and not some one size fits all which I have learned is so untrue for those of us with Parkinson’s.</p>

    • #20260
      Anthony
      Participant

      <span class=”VIiyi” lang=”en”><span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”ru” data-phrase-index=”0″>Hello Mary Beth, </span></span>

      <span class=”VIiyi” lang=”en”><span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”ru” data-phrase-index=”0″>I have nothing to compare with to judge about  the rate of development of symptoms.</span> <span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”ru” data-phrase-index=”1″>But it seems to me that the speed increased from the beginning of taking the pills.</span> <span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”ru” data-phrase-index=”2″>None of what I ingest seems to work.</span> <span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”ru” data-phrase-index=”3″>Although I spend more than 40 minutes every 4th day on the treadmill and do push-ups every morning.</span></span>

    • #20268
      Regina
      Participant

      I was diagnosed  3 plus years ago.  Patch raised up and fell off and the meds all made me sick.  I have tremor dominant pd.  Had DBS surgery in June 2020 and feel so much better.  Still have mild tremor in right hand but I didn’t  let it stop me.  I am 68 and teaching myself how to play the harp.  I talk in my sleep but laugh about it.  PD is not a death sentence- not by a long shot!

       

    • #20271
      Phil Gattis
      Participant

      2nd most important treatment is humor.  my current favorite one-liner:  “I’m having short-term memory loss; I’ll talk to you next week.”

      most important treatment: exercise

      However, C/L initially helped reduce symptoms significantly, so I hesitate to drop Rx treatment, but I rank it in 3rd place.

    • #20272
      Robert
      Participant

      Phil

      My wife’s 93 year old Danish grandmother had the greatest phrase.

      “I have a very good memory.  It just isn’t very long.”

      Best regards.

      Robert C.

       

       

       

    • #20274
      Barbara Ford
      Participant

      In the 8 years of treatment for Parkinson’s, I have learned that the list of “typical “ symptoms, such as stiffness, tremor, tiny handwriting, etc. are far from being all the symptoms one might experience. The difficulty is trying to figure out what is and what is not related to Parkinson’s. Add aging (I am 74) to the mix, and the mystery expands. My doctors claim I am healthy, so do I blame unusual acute pain or digestive issues on Parkinson’s? Does this mean these issues can’t be fixed outside of possible treatment of the symptoms, which typically does not do much to help? If anyone has an answer to this quandary, please tell me!

    • #20286
      Renée Osborne
      Participant

      My husband was diagnosed 1 1/2 years ago with Parkinson’s. After several months of medication, there was no evidence of it being effective. I was able to get an appointment last July at Mayo in Rochester, MN, where his diagnosis was specially indicated as MSA – Multiple Systems Atrophy, a more progression and rare form of PD. Mayo offered several treatments for the symptoms, i.e. Botox for potential drooling. Most recently, Mayo has opened a new Disorder Center for MSA. We’ll be going there in April. My suggestion is to make sure you have correct diagnosis. Additionally, if you can get to Mayo in Rochester, I highly recommend!!
      Renee Osborne

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