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Superdecooper

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Superdecooper last won the day on April 21

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About Superdecooper

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    Advanced Member
  • Birthday August 30

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  • Gender
    Male
  • Location
    maryland
  • Interests
    music, writing, sci-fi, reading, swimming, movies.
    Feel free to contact me at scoop1200@yahoo.com

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  1. Superdecooper

    Welcome to the club

    So I see the Johnson Hopkins MDS for a second opinion on PD in the first week of June. here is how things stand.. about five months after a positive Datscan and starting Azilect. i still dont have a clear diagnosis from my PD fellow -- who just recently earned his MDS status. He says I have a dopamine deficiency and possibly early signs of PD. He thinks the Datscan may have been a false positive, because the resting tremor I have shows some signs of entrainment, and because I was taking opiate pain medicine at the time of the test - which He required me to stop as a condition of starting Azilect. He also sent me off for Occupational therapy for dystonia like symptoms in my hand and Physical therapy for balance and freezing issues. I've talked to a few other more experienced MDS about my case - not a full exam just conversations - and they also disagree with my doc's view of the Datscan results being influenced by opiates as do fellow forum members Christie and Dr Okun. The other MDS also question how you can have a dopamine defiency and not have PD. I have started swimming a mile each night and have lost about 20lbs since December and cut my blood pressure medicine in half. My masseuses and chiropractor tell me I'm less stiff now, but as soon as I take time off from swimming they immediately notice it. Here are where my symptoms stand: im sleeping roughly six hours a night, still sweating but manageable if I sleep in a cotton t-shirt. This is an improvement from 3 hours a night, serious night sweating, super vivid dreams, kicking in my sleep that lasted all of 2017 and part of 2016. I still have a tremor in my right hand affecting my typing and other fine motor activities, it starts early in the morning just after I wake up and haunts me as I go about my day. But I can mostly ignore it. im still dropping things frequently (super frustrating). Also dragging my feet as I walk. I'm not sure about reduced arm swing, but my doc says I have an intermittent problem with that. my sense of smell is a little bit better - I can now identify when the kitchen garbage is smells terrible when I'm right next to it. That's different but still I'm not smelling nearly as strongly as my wife. I'm still hopelessly clueless about the trash cans in the garage. But ive also been noticing fresh cut grass these days - that's an improvement. still got hand dystonia, but I'm managing it with baclofen, but when it wears off my hand wants to close into a pain cramped shell. I'm doing daily exercises with clay and other objects to retrain my brain. my right toe has started cramping and curling under - that's probably dystonia, and it started in early April. i have a random teeth chattering tremor that has resulted in me cracking a molar -and grinding down others - dentist is ordering me a mouth guard for sleeping at night. That started in Dec. stupid handwriting gets smaller the longer I write. So now I try to write short sentences or just stop in mid thought. im freezing at doorways and stairs, especially if a door is half closed. and I'm dealing with apathy that's affecting the quality of my work and interactions with Mrs. s, who worries about me. I also won't be missing meals or sleep, eating too much fast food or getting caught up in family dramas - stress is just not good for me. I also have some of the other associated medical problems common to pwp, such as sleep apnea, vit D deficiency, hypogonadism in addition to lingering spinal problems . thats basiciaLy where things stand. I could go on but that's enough. i could really use some clarity from my medical providers. I just want to get things settled and move on with my life. As always, thanks for listening -S
  2. Superdecooper

    Missing Meals?

    Hey gang, what happens when you miss meals, does it make your Tremor worse, or anxiety, etc.? and what happens if you eat junk/fast food? I know the old saying “garbage in, garbage out” but this seems a little overboard. I had to take an emergency overnight road trip to see family and there wasn’t enough rest, or home cooked food and too much stress. Life is way less good yesterday and today. My symptoms seem to have gone into overdrive. Whats that all about? -S
  3. Superdecooper

    See an MDS or continue to monitor as per my neurologist?

    Hi John, i cant really tell from your videos, but then I'm not a doctor. if you are very concerned, you are going to have to go to a neurologist that specializes in PD called an Motion Disorder Specialist. -S
  4. Superdecooper

    Lost waiting for a diagnosis

    Hi Christian, try to hang in there. It takes a while to get a diagnosis. Living in limbo is no fun. I know you're not seeking to have PD, you just want to get answers, get fixed and move on with life. While waiting, start exercising and find a hobby to get involved with. maybe it will make the time go quicker. -S
  5. Superdecooper

    Watch your teeth!

    Hey Stump, Did you ever get a mouth guard? My dentist just told me I'm starting to grind my molars and I've even cracked a small chip in one. She wants me to start wearing a mouth guard. My teeth have been chattering randomly since December.
  6. Superdecooper

    Pain in hip

    Lori, i know a lot about this topic, unfortunately..if you care to PM I can give you a few insights about what to look for. I agree with getting an orthopedic doc to take a look. It might also resolve with physical therapy. -S
  7. Superdecooper

    When do you tell your customers you have PD?

    Andy, sorry to hear about your troubles. I get the feeling you were (are) a Type-A person who made decisions quickly and easily and problem solved around what others would see as catastrophic. Now with PD, that essential part of your personality seems to be under attack and fading. heres a couple of suggestions: can you afford to bring on a college intern who could do some of the work for credit and a small stipend. Can you renegotiate your contract with your major customer - it doesn't sound like stress is going to be as much a motivator for you as it has been in the past. i encourage you to make the best of your future and not dwell on the level of perfection you have achieved in the past. Focus on excellence where you are with your current abilities. We all face the prospect of getting older - not many have to do that while dealing with PD - but hopefully we can find a way to get better. You sound like a survivor to me. And I'm sure you find the right resources to help you stay productive. -S
  8. Superdecooper

    Question about Link between dopamine and testosterone

    Just an update. Talked to my urologist and he confirmed the theory that a dopamine shortage could allow unchecked prolactin to limit production of testosterone. He offered to check my prolactin levels at the next blood test.
  9. Superdecooper

    High blood pressure and PD

    Hi Mark, After cutting back on the Amlodipine, my blood pressure initially rose to about 129/80 and then was holding steady around 120/70 , but alas. it seems to be dropping again. My reading from two days ago was 111/59. My BP initially rose years ago because I was in a lot of cervical disc, lumbar disc and SI joint pain, but that seems to be moderating with aggressive exercise, PT, chiropractic care, and gabapentin. Questions: would taking Azilect had a mild impact on the level of the overall stiffness? Is it time to go back to the doc to adjust BP meds yet? -S.
  10. Superdecooper

    Welcome to the club

    Just an update...latest two issues I'm dealing with. So, I've just started having dystonia in my right foot last week. I get this kind of urge to stretch my big toe and then it goes on automatic pilot for the next two or three minutes.. sort of curling under repeatedly. My Physical therapist thinks it's dystonia and gave me some exercises to do to stretch out my foot...   Also, I've been having teeth chattering since December - at random moments, when I'm stressed, or cold, lasting for two or three minutes at a time. I just came back from the dentist where she said I'm starting to grind my molars and I've cracked one of my teeth.. So I'm going to have to sleep with a mouth guard.
  11. Superdecooper

    Tremor when nervous?

    I just left the dentist for my cleaning appointment. I cracked a tooth and will need to get a crown. The dentist said teeth chattering is starting to wear down some of my molars and has contributed to the cracked tooth. She’s ordering me a mouth guard for night. And wants me to get some temporary mouth guard thingy for day time use that I can slip in if needed. Hmmmm...not sure what to make of this.
  12. Superdecooper

    Tremor when nervous?

    I have a very mild problem with this. Lately I’ve been biting my tongue a lot. My teeth start chattering when I’m nervous, walking in or out of buildings, talking with people and concentrating - my physical therapist said she thinks it’s related to asking the brain to multitask.
  13. Superdecooper

    dyskinesia free l-dopa

    I think Dr. Hinz was removed from the forum. So, I'm letting his issues fade with him.
  14. Superdecooper

    Just Deny Everything

    Good advice from Stump Also depends on the field you’re in and whether there is a worker shortage and how much experience you have. Usually smaller companies are more helpful. Larger companies almost require you to file ADA paperwork to protect themselves and you. If your health is lowering your productivity then you will eventually have to leave the island of denial. -S
  15. Superdecooper

    High blood pressure and PD

    Thanks this was very helpful. -S
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