1. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's

    Marshview updated his basic information

  2. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's

    Marshview shared details about Azilect

  3. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's

    Marshview updated the condition Parkinson's Disease

    • First symptom:
    • Diagnosis:
  4. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's
    I finally have an answer and it is called Lewy Body Disease. It has taken 4 years for me to learn that I am not crazy nor have I made up all my symptoms. I have Parkinson's and /with Lewy Body Disease (not dementia). This accounts for the continuing ups and downs in my physical and mental abilities. Some days I can cook like Julia Child and others I can't heat a frozen pizza. Some days I can move aroundfine. Other days, I can't get in and out of the bed without help. With Lewy Body, my life will continue   o be a roller coaster, but AT LEAST I FINALLY HAVE A NAME TO CALL IT. Thanks Mayo!

    From the beginning, I knew that Michael J. Fox and I had little in common. The meds never held me for more that 3-4 months at the time. Then my symptoms would return. Which led to an increase in medication which worked for 3-4 months ago. This has been a continuing cycle since 2008. Then my neuro referred me to another neuro. The new neuro (on my first visit) said that I definitely did not have plain, ole Parkinson's -- he just did not know what. This lead to every test known to man. All of which revealed nothing. The only deficiency was a low B-12 level. The neuro believed that I may have SupraNuclear Palsy or Multiple System Atrophy. We then agreed that a referral to Mayo was the answer. So I waited ... from April 2012 until December 2012 when Mayo in Florida could finally see me. In less than 3 weeks, my life turned around. Because I, at last, have a name to call "it" which is Lewy Body Disease. I don't have dementia or Alzeheimers (yet) but I do have mild/moderate cognitive abilities. I will continue to have good and bad days; without notice. But now I have a name to call it which is a relief. I had gotten to the point to where I honestly believed that I was making it up. Only my partner believed me. I am sure that the road ahead will be rough, but now I am happy just to have a name to call my ailment and that name is Lewy Body.

    Right away I knew this was what I had as all the symptoms just seemed to fit me. All the others didn't fit completely. I had heard the name, Lewy Body, but didn't really know what it was really.

    On another subject, I stopped working in February 2012. I filed for disability with Social Security in March 2012 and was approved in August. I had to wait the mandatory 6 month waiting period and I received my first check in January 2013. My experience with Social Security was relatively painless. However, staying at home all day isn't necessarily a good thing. I am still trying to find a routine for myself.

    In February I also gave up driving and we moved from the country into town, downsized. Now I can bicycle (on my good days) across the street to a shopping center. Now that I know the name of my disease, I intend on looking for a place to volunteer.

  5. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's

    Marshview added a treatment evaluation for Mirapex from

    • Perceived effectiveness for Parkinson's Disease: Slight
    • Side Effects: Moderate
    • Adherence: Always
    • Burden: A little
    • Dosage: 4.5 mg Daily
    • Cost: $25-49 monthly
  6. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's

    Marshview stopped taking Mirapex

    ReasonsDoctor's advice
  7. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's

    Marshview was feeling very good

    Was diagnosed yesterday with Dewy Body disease. This comes after the last 11 months of my life has been placed on limbo until a diagnosis could be found. At last I have a name to call it.

  8. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's

    Marshview updated his weight

  9. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's

    Marshview completed the QOL survey

    • moderate Social
    • moderate Mental
    • moderate Physical
  10. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's

    Marshview completed the PDRS survey

    • PDRS: 30
    • On treatment
    • mild Mouth/throat
    • mild Arms
    • mild Chest
    • mild Legs
  11. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's

    Marshview updated his symptoms

    Back pain BetterBack pain, Bowel irritability, Brain fog, Compulsive behaviors, Constipation See more
    Slowed thinking WorseSlowed thinking, Slowness
  12. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's

    Marshview started taking Nature's Bounty Melatonin

    Dosage10 mg daily (starting )
  13. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's

    Marshview became a 3 star data donor! star earnedstar earnedstar earned

  14. 5346 thumb
    Marshview
    Sex: M
    Data Quality: 2 stars
    On
    Mouth/throat: mild
    Arms: mild
    Chest: mild
    Legs: mild
    I am: vg
    I have:
    Parkinson's

    Marshview completed the QOL survey

    • moderate Social
    • moderate Mental
    • moderate Physical
    1 comment from other members. Only showing public users' comments. Sign up to see all comments!
    • 5346 thumb
      Marshview
      Sex: M
      Data Quality: 2 stars
      On
      Mouth/throat: mild
      Arms: mild
      Chest: mild
      Legs: mild
      I am: vg
      I have:
      Parkinson's

      Marshview updated his basic information

    • 5346 thumb
      Marshview
      Sex: M
      Data Quality: 2 stars
      On
      Mouth/throat: mild
      Arms: mild
      Chest: mild
      Legs: mild
      I am: vg
      I have:
      Parkinson's

      Marshview updated his symptoms

      Excessive daytime sleepiness (somnolence) BetterExcessive daytime sleepiness (somnolence), Insomnia, Micrographia (small handwriting), Pain in knees, Sleep problems See more
      Anxious mood WorseAnxious mood, Back pain, Blurry vision, Bowel irritability, Constipation See more
    • 5346 thumb
      Marshview
      Sex: M
      Data Quality: 2 stars
      On
      Mouth/throat: mild
      Arms: mild
      Chest: mild
      Legs: mild
      I am: vg
      I have:
      Parkinson's

      Marshview updated the condition Lewy Body Disease

      • First symptom:
      • Diagnosis:
    • 5346 thumb
      Marshview
      Sex: M
      Data Quality: 2 stars
      On
      Mouth/throat: mild
      Arms: mild
      Chest: mild
      Legs: mild
      I am: vg
      I have:
      Parkinson's
    • 5346 thumb
      Marshview
      Sex: M
      Data Quality: 2 stars
      On
      Mouth/throat: mild
      Arms: mild
      Chest: mild
      Legs: mild
      I am: vg
      I have:
      Parkinson's
    • 5346 thumb
      Marshview
      Sex: M
      Data Quality: 2 stars
      On
      Mouth/throat: mild
      Arms: mild
      Chest: mild
      Legs: mild
      I am: vg
      I have:
      Parkinson's

      Marshview completed the PDRS survey

      • PDRS: 38
      • On treatment
      • mild Mouth/throat
      • mild Arms
      • mild Chest
      • mild Legs
    • Show more