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Superdecooper

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Superdecooper last won the day on July 11

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About Superdecooper

  • Rank
    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

    A little something to think about

    Princes & Kings by R.L. Sharpe Isn't it strange how princes and kings, and clowns that caper in sawdust rings, and common people, like you and me, are builders for eternity? Each is given a list of rules; a shapeless mass; a bag of tools. And each must fashion, ere life is flown, A stumbling block, or a Stepping-Stone.
  2. Superdecooper

    Welcome to the club

    Hi everyone. I was on vacation at the beach last week, and it was so very nice. I took the chance to reflect on nature's beauty and get closer to my wife. thanks for the encouragement papa57. I try not to dwell on the what ifs, but living in the present sure can be hard when the future has changed so dramatically. I thought I knew where I was going, now I'm not so sure. I've always been a planner so I may have to revise that habit. I will find a way to keep looking forward with hope. Thanks for the compliment LAD - I'm a writer like my father before me. Yes, it's entirely possible I could use my talent in some way to advocate for Parkinson's. I haven't considered it, but will now. I'm becoming an expert on this disease as I try to figure out how to live in this new world. and cereus, it's interesting that you describe your body as feeling an invisible line. For me, it was more like having dead zones that were rebelling against my desire. Sinemet is an eye opening experience for me, even though I really haven't worked out when to take the meds consistently yet. The future's not written - and I don't want to spend too much energy worrying when today has so many opportunities. You may consider it a sneak preview, but those scenes may not actually show up in the movie. I'm finding that if you look at life through the mirror of PD, problems may appear closer.
  3. Superdecooper

    Welcome to the club

    Deep thoughts on Sunday morning. Here I am...dealing with the 5 stages of Grief: grief, denial, anger, bargaining, depression, and acceptance. They are a part of the framework that makes up our learning to live with the one we lost.. or in my case, coming to grips with the life change that is PD. I feel like I'm on a highway to acceptance, but there are these exits along the way that I just have to stop at to check things out -- look at the vending machines, see whether the parking lines are straight; go to the restroom, look at the maps, smell the flowers - I can't stay there forever, but the rest stops do provide a break until I can get moving again. I'm somewhere between the exits for denial and anger right now, and I can see the exit for depression just ahead. Obviously I need to learn something here, but it escapes me right now. This is my life ..still an impossible mix of random and chaotic...I'm becoming a different person. I feel like in life we are all given a box of gifts at birth that are shiny and new... like humor, empathy, athletics, looks, brains, etc. We open them up and experience the joy and pain of living. Towards the latter half when the box seems mostly empty, you get near the bottom and notice a few more pretty special gifts wrapped in elaborate paper - some tied with darkly colored ribbons and fantastic designs. Ahh, what could this be, you wonder, while opening one. Inside you find a gameboard and a pair of dice. Rolling them, they land on 5 and 6. Not snake eyes, but not a lucky 7 either. Wait! the 5 lands on five stages of grief and the six lands on parkinson's. What kind of game is this? And how do you even win? I thought I knew what courage was, but I'm definitely getting a personal lesson in it right now. That's where I am this morning... I will find a way or make one.
  4. Superdecooper

    Peeved PreClinical Parkinson's Person

    Hi Kara, I'm sorry for your in-betweener status. I know exactly what you're going through. You know something isn't right, you want answers so you can get the right treatment and move on with your life. The doctors seem to be taking so long to diagnose and treat - so that leaves you feeling like - I don't want to be in the position of trying to persuade a medical professional that I have Parkinson's because that makes me look like a hypochondriac; but being told to go home and live my life just ain't right. Who wants a diagnosis of an incurable brain disease that you have to fight everyday...nobody. But you also have family experience with PD and you want to get a head start on treatment to get the best chance for holding things at bay. Also, You haven't said how old you are or whether you look "too young" to have PD. But doctors definitely seem to take that into account. You're going to have to keep looking for the right doctor. Get a Datscan and try to get a trial of Sinimet. In the meantime, keep exercising. Here's what a fellow forum member told me when I was in your shoes.. You are not shopping for a PD diagnosis. You are not shopping for anything. You just need a solid diagnosis, and a solid treatment to match your symptoms. Nothing more nothing less. We can't change what we have, but we can change how we perceive it and, most importantly, how we treat it. PD is just a disease. If you end up with a diagnosis of PD remember that , although not the best disease to have, it is certainly far from the worst, and it is highly manageable with drugs almost for decades...
  5. Superdecooper

    Upcoming MDS visit for second opinion on Essential Tremor

    Hi Dr. O, I received a DX of parkinson's disease from my new MDS at Johns Hopkins, who I visited for a second opinion earlier this month. I'm now taking Azilect and the new MDS added a low dose of Rytary that seems to be controlling my symptoms pretty well. It just about stops tremors in my right index finger and thumb, teeth, right foot and left index finger.i have three questions. 1. I know everyone is different, but how long does the honeymoon period last - 5 years, 10 years? 2. Is progression considered to be when symptoms move to the other side of the body. I ask that because my left index finger has a tremor already and all of my other symptoms are on the right side of my body. 3. the Rytary has definitely decreased, by a 1/3 to 1/2, the amount of daily medicine I take for arthritis, spinal disc and joint pains and stiffness. Does that mean those issues that I thought were related to spine and joint problems, were really PD? Thanks for your help. -S
  6. Superdecooper

    Nightly bladder problems

    Hey Lahdedah, i have a cold this week. I'm having a problem finding over the counter cold meds because they all contain Dextromethorphan, which conflicts with Azilect in some way.
  7. Superdecooper

    Good morning!!

    Another Sunday ... I fill my lungs with the sweet life of morning and hope.
  8. Superdecooper

    Just Interesting Things about This and That

    Thought for today: Whether you give a man a fish or teach him how to fish, your job hasn’t changed. Your job is fish. It is not to make value judgments about whether the person is deserving of fish. It is not to criticize the person for not knowing how to fish already. And it is certainly not your job to stand around and debate the relative efficacy of fish charity vs. fish education while the person in front of you goes hungry. This person is your fellow human. Your job is fish. —author unknown.
  9. Hey Musicman,

    What Lee Child's book are you reading now. I just finished Night School. 

    -S 

  10. Superdecooper

    Welcome to the club

    Is that a lot? My doc has me on Rytary 95, one capsule 3x a day. I’m a pretty muscular 6’2, 230lbs so I guess that’s why he didn’t start me on a lower dose. You are taking more than three times as much sinemet as I am. But then, you’re not taking Azilect, which I gather you had a bad reaction to.
  11. Superdecooper

    Welcome to the club

    I’m really not sure what to make of these PD meds. I honestly feel like I’m in my early 40s when I take this Rytary. It’s like stiffness and clunky movements evaporate and I feel like I can glide from place to place without a care. It’s the opposite of how I felt last week. It really reminds me of the athletic grace that I had in abundance when I took karate. That grace sort of slipped away in my early 40s. I do remember waking up saying something has changed around 2004. About 5 years later I started having the very first vivid dreams and kicking in my sleep, and sleep apnea problems, and low T.
  12. Superdecooper

    Welcome to the club

    Ack. Wait a sec. you mean to tell me that as soon as the medicine starts wearing off, the symptoms start coming back. Seriously?! ummmmm, this is definitely sucking.
  13. Superdecooper

    Welcome to the club

    Hi adams234, thanks you for the kind invitation...I decline! first question: can I give my membership invitation back, no? DRats, what is this the Mafia? Hotel California? 😀 i am dealing with this, but I am going to have questions on how to stay strong and be positive, like LAD says I should do. For now, thanks everyone for the encouragement. -S
  14. Superdecooper

    Welcome to the club

    Yep still in denial, but getting there slowly.. but really, who's rushing. Especially when I get more results to consider. The Johns Hopkins review (done by two separate radiologists) of my Datscan was posted yesterday... I-123 DaTscan SPECT consistent with moderate dopamine transporter deficit in the bilateral putamina and mild dopamine transporter deficit in the left caudate. These findings are consistent with Parkinsonian syndrome.
  15. Superdecooper

    Welcome to the club

    My interesting life continues...
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