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Kara3

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  1. Kara3

    has anyone seen this?

    Parkinson's may start in appendix: https://www.health24.com/Medical/Parkinsons-disease/News/parkinsons-disease-may-start-in-appendix-study-finds-20181101
  2. Kara3

    Peeved PreClinical Parkinson's Person

    Thanks ShopGuy for your kind response. Some of my symptoms are fairly recent (within the past few months), so the doctor MDS did not hear about them. My fall, nocturnal drooling, dry mouth and eye tremor started after my last doctor's appointment; although, I did send him an email about the eye tremor, and he wanted me to come back in. My motor skills for the most part had not changed enough to be evident in an exam (I practice them everyday); he's not a doctor I would ever see again. Also a fairly new symptom is losing my balance ex. when I turn left I sometimes keep leaning left and start to fall; although, I generally stop myself. I do a lot of hiking up and down rocky terrain and believe that helps. I also worry more about depression, anxiety and apathy than I do physical disabilities. I have always been a very positive person and could snap myself out of self-pity, sadness or depression. I can't really think of a time in my life when I have been depressed. I can feel the tremors inside my body. I am quite confident that I do have PD, but I hope you are right. The advice you just gave me should have come from the doctor.....eat healthy, exercise, plan your finances..... Thank you!
  3. Kara3

    Peeved PreClinical Parkinson's Person

    Thank you so much for sharing your story, McCall. Having a family history has made me more aware of subtle symptoms; although, to me they are very obvious. I would bet many people dismissed years of symptoms before they were diagnosed. Hindsight is 20/20. My mother with PD is 87 and has been in a healthcare facility for 5 years. I was hoping since her diagnosis doctors had gained more knowledge of early diagnosis and treatments. She never shared her symptoms with me, so it was only what I observed as the disease progressed....frequent falls, hallucinations, tremors.... I have already learned so much from reading this forum! Thank you again for sharing your experience. It sounds like you found some good doctors. I will keep you both in my thoughts and prayers!
  4. My mother with PD was constantly told to exercise by her doctor. It was never going to happen. She didn't enjoy exercise. (She's 87 in home) If a person has not experienced the positive impact in the past they may be more reluctant to add it to their daily routine when diagnosed....maybe? I had a tremor in my eye for over a year. While preparing for a trek to EBC and Kilimanjaro the tremor in my eye became severe immediately after exercising to the point I wanted to pull my eye out of my head. During my trek in Nepal the tremor went away and was gone for a couple weeks after returning. The tremor came back. A few months later I hiked Kilimanjaro and the tremor went away again. It has been a year since and the tremor has not returned. I don't know if it had anything to do with the extreme exercise or just a coincidence, but I'm so glad it is gone. I'm a lot less motivated to exercise lately, but I know I will feel better so I force myself. In the past it was something I looked forward to.
  5. Kara3

    Tremor when nervous?

    I clear my mind and breathe deeply as someone already mentioned. It really works for me.
  6. Kara3

    password

    Yes, I am typing in the correct password. 😕 A tech should look into this.
  7. Kara3

    password

    I'm having the same problem. Did you ever get this resolved? Thanks!
  8. Kara3

    Interrupting Parkinson's disease

    http://www.kpbs.org/news/2018/jul/03/san-diego-parkinsons-fighters-battle-disease-resea/ San Diego Parkinson’s Fighters Battle Disease As Researchers Close In On Breakthrough (".....transplanting healthy brain cells to replace the cells killed off by the disease.") Tuesday, July 3, 2018 By Susan Murphy
  9. Kara3

    Peeved PreClinical Parkinson's Person

    Exactly. I told the doctor it's not that I want to have Parkinson's. I don't want medication either. I just want to get involved with research and unfortunately without the diagnosis I can't get involved. It's like the chicken and the egg thing??? Catch 22??? Not sure what it's like other than frustrating. I will be 61 in a few days. I first suspected when I was 58, waited a year to see my first neurologist, saw a second movement disorder doc when I was 60, and I'm guessing won't get a good diagnosis until I'm 65. My symptoms are very sporadic at this point. Good advice. PD is not the worst thing that could happen. Knowing my PD future gives me opportunities that others may not have had. Always live your life to the fullest; no one really knows what will happen tomorrow. I could die in a car accident tomorrow and wasted years worrying about something out of my control, but I still want to be involved and help find a cure.
  10. Kara3

    Peeved PreClinical Parkinson's Person

    Thanks so much for the link. I will check those out. I am pretty much willing and able to travel anywhere for research that focuses on early diagnosis, cures, exercise, or slowing the progression of.
  11. Kara3

    Peeved PreClinical Parkinson's Person

    Thank you for your response, Kevin. The second doctor I saw was a movement disorder specialist at one of the "largest clinical trial programs..." which was why I chose it. I am not really experiencing any motor issues that would be visible during an exam. Most of my symptoms are at night except the recent fall. My only interest at the time was in research; I cannot get involved with research until I have a clinical diagnosis. Most of their research focused on medications. I'll take a wild guess they are sponsored by pharmaceutical companies. I did participate in one study as part of the control group. They did genetic testing, but since they are not a medical facility will not give me the results. I don't recall my mother being on medication for that long (5 years) before she got a diagnosis. It is very frustrating to wait as brain cells die away. I generally have a good attitude for now and try to exercise a lot and enjoy my life while I can. I worry more about my kids and what their future holds. I hate that I possibly passed this down to them.
  12. About 2 years ago I started experiencing signs of Parkinson's....extremely painful leg cramps at night, vivid dreams, small handwriting, internal tremors, eye tremor, nocturnal drooling, dry mouth and occasional tremors in my foot and fingers...to name a few. After a year of sporadic symptoms I went to see a neurologist who laughed at me and said I didn't have Parkinson's. I went to another neurologist who also laughed at me and said I didn't have Parkinson's. I'm not sure how they were so confident since they could not see into my brain, but regardless I'm sure they could have responded in a more compassionate manner. I guess when you are an arrogant doctor it's better to make the patient feel dumb rather than admit your own ignorance It is important for me to get an early diagnosis in order to get involved in research. At least I would feel I was doing something. There is no research for someone who "thinks" they have Parkinson's. My mother has Parkinson's along with two of her brothers. Where is the research on epigenetics, early diagnosis, cure!!! At this point I feel so hopeless; I'll just wait for enough brain cells to die, so some brilliant doctor can get out their prescription pad, and write me a prescription. I had my first fall last week and messed up my shoulder. If anyone is aware of research that involves preclinical PD patients (not sure that's a valid term) I would really appreciate it.
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