Jump to content


Banned Members
  • Content Count

  • Joined

  • Last visited

  • Days Won


Luke last won the day on May 23 2017

Luke had the most liked content!

Community Reputation

24 Excellent

About Luke

  • Rank
  • Birthday 05/22/1969

Profile Information

  • Gender
  • Interests

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Luke

    Loosing My Mind

    Boy, talk about missing the point of the post. Thanks for bringing sunshine to everyone's lives! Telling us we are at a disadvantage and keeping our fingers crossed that our loved ones stick by us?? I have two "care-givers" in my immediate family, and two others in my extended family. I know the drill, but thanks for sharing your opinion. Thank goodness you will never be in my future! I will appreciate my wife, and as such, she should appreciate me for who I have become. We are a team, and hopefully we will stay that way; without having to rely on narcissistic care-givers like yourself. And when you quote my post, please use it in its entirety, so you don't "frame" your opinion. Move along please.... P.S. My apologies to the OP. IM me if you wanna talk further about this topic, as we are in the same boat. Another good subject matter polluted, unfortunately, that needs to be moved offline.
  2. Luke

    Loosing My Mind

    Actually, a pretty good post, IMO. I could have written it myself. I was extremely angered when my wife kept mentioning how her social life has been ruined by my lack of interest in what we used to enjoy together. I didn't ask for the change in out social priorities, and I certainly don't like it; but I considered it a guilt trip on her part. Was I being selfish? Maybe, but marriage is a two-way street. I need to understand her concerns; but she needs to understand that my mind is now different than before. I'm actually appalled by some of the responses here. I don't think you're a moron, and I don't think that you have to be "nicer to her" so she doesn't bail on you. You are reacting to negative cues like any other normal person would. Talk it out; do research together; and find common ground, if possible. If she doesn't attend all of your Dr appointments; bring her along and talk to the Doc! I think my wife and I finally worked through it, but it took a while. Hopefully, you can as well Thanks for posting!
  3. Luke

    Specialist Appt Tomorrow - what would you ask?

    1) Explain parkinsonism vs Parkinson's. What symptoms do I have (or don't have) that make it different? 2) Could it be MS, since lesions show on the MRI? 3) What is typical for progression? What symptoms come first, and what can I expect going forward? 4) What are the obvious symptoms, and what are the non-motor symptoms? (i.e. depression, apathy, confusion...) 5) There is evidence that some people may exaggerate symptoms subconsciously. Make a list of symptoms you can't fake, in case they decide to dismiss your initial diagnosis, and discuss them in detail. They call it "giveaway" on some motor and strength tests. I had a neurologist (non-MDS) say early on that I had giveaway. I had to look it up after I saw the post-appointment notes. You obviously don't want PD, but the mind is a crazy thing if you're convinced you have PD... In hindsight, I wish I could have asked him whether my confirmed sleep apnea and REM Behavior Disorder were fake. Or if I intentionally wet the bed with my incontinence. MDS's are smart and they should be trained to see the differences. No need to exaggerate, just be yourself... Good luck to you! ,
  4. Luke

    Pay attention.

    Well that says volumes about you, that you took my post in a negative manner. I could have said LOL because I agreed with you and thought your post was funny. On the other hand, I could have said LOL because I thought it was total hypocrisy on your part for polluting a thread about health insurance with your personal ideology. Either way, you polluted a thread. Not far in the past, you started a thread on Christian Faith that was polluted by a few non-believers. You didn't take it well, and I didn't think it was necessary either. What does impeaching Trump have to do with Healthcare questions? CNN, MSNBC, Fox and many others have political threads. Let your frustrations out there. Here's a hint: Nobodies minds will ever be changed. And yes, our political situation is in dire straits, but I didn't think this board was where I would have to encounter the endless blabber I see everywhere else! If you want to start a personal, political dialog, feel free to message me so it stays off this board. If you want to start a Christian dialog about judging others or casting the first stone, I'd also be happy to entertain you.....Keep it fair and civil regarding the intent of the thread. Is that so hard to ask?
  5. Luke

    Pay attention.

    puke what??
  6. Luke

    Pay attention.

  7. Thanks for the info, very informative, especially in my case. I think Dr Okun mentioned this in an older thread, stating it measures your dopamine uptake, but not your actual dopamine. Count me (I think) in the category of the previously reported 5-15% error rate on scans. When my MDS says "you have all of the symptoms, but a negative scan", something is going on. Two more boxes to check off at my next appointment include the sudden onset of Rhinorrhea and drooling. Rhinorrhea comes on like a bloody nose. You don't realize anything until your nose drips on the food you're eating. The drooling; well it's also self-explanatory. Just embarrassing! My next apt is 25 days away. We'll see what happens, and if she is willing to throw the results of my Scan in the G-file. I will definitely post the results...
  8. Luke

    adverse effects of generic carbidopa

    I also have the jerks of the jaw. Was taking Ropinirole and just switched to C/L this week so hopefully they will get better. Mine always happened at night. I wear an oral appliance for sleep apnea. If anyone knows how these work, they basically lock your jaw into a "set" position with two metal clips. My jerks were bad enough that I would unlock the mouthpiece in my sleep and wake up in a panic. Very painful!!! Haven't talked to my MDS about this yet, but will get her opinion at my next appt.
  9. I've really enjoyed my short time on this board, so I want to see if I can lighten the load (so to speak), and get people's opinions on their experiences with the dreaded "memory test". I'm assuming most people have had one in the course of their diagnosis, so tell me how your test went... For me, when I heard it would last 4 hours, I was stunned. I don't want to compare this test to Navy "buds" training, but the exhaustion I felt afterwards was probably similar. The Tester: "Here are 20 words I want you to remember"...."Duck, pail, flower, swingset, hammer, vase, telephone, door, goose........" Me: I'm sorry, did you say something about a bird calling a pigeon to ask about monkey bars in the garden? The Tester: No response (they never have any response!) Me: I'm sorry, is it possible to repeat those words again? The Tester: "okay, you got two right, let's try again....... Me (just in my head): For the Love of God! We are only 5 minutes in! Is this going to continue for another 3 hours and 55 minutes!! That's my short version. I won't get into shapes, blocks, numbers, or the cream of the crop question... "What does Sacagawea mean to you?" Please tell me what you thought of your test. I think a good laugh is in order! Luke
  10. Why are you still posting to this thread if you don't agree with the content? What is a "special and exclusive club" on an OPEN forum? Start a thread on cats and dogs copulating; start one on how you roll chicken bones to see your future; start one how you think cows are holy. I don't think anybody cares; and if you do start a "counter-thread", most civil people will ignore it if they don't agree. I tend to follow and respond to threads that can relate to myself, and the title of the threads give me the first clue. It's an easy concept! Live your life and don't be scared of other's opinions that are not your own. Now you can carry on, I'm out....
  11. Ed, Great reply, thank you! I see you're from Madison, but you referenced your doc as a "he"? Thought for a moment we might share the same doc. I think I might have mentioned in an earlier post that my MDS didn't want to start me on Levodopa just yet. She was concerned about the increased "jerkiness" that could occur. I already have the jerks in my torso and legs when trying to stand still, what's a few more Four weeks til my next apt, so we'll see what happens. And I think you are spot on in your assessment of the Scan. I get a lot of information from my buddy in Boston who specializes in DBS. I'll take his information any day over Dr Google (as NN calls it) thanks again...
  12. I can't resist posting to this very long-standing thread. I am of Christian faith, so I decided to "open it" to see what it had to offer. If I followed Islam, Judaism, or any other religion (or non-religion), I wouldn't have bothered to read the post. If I read a sign on the door of a business that said "Only those who are atheists are allowed", I wouldn't enter. The title of the post tells you where you are headed "A thread for anyone interested in topics of Christian faith--all invited." What is so flippin hard to understand and complain about? If you find comfort in your religion to help with PD, then great. If you have no religion, great. Then post another topic expressing as such. Don't pollute a legitimate thread on a free, non-moderated forum. I'm always amused how non-believers always complain, and it never goes in reverse. My temperament tells me it may be time for my meds. Carry on....
  13. To NN: Don't worry about going off-topic. All of your input is valuable and it seems everyone has your respect on this board. And I've added a signature just for you
  14. Very informative, thank you. Just curious if you or your husband has ever had a PetScan? My MDS brought this up as an option, but I have so far declined. Can only pay so much in medical costs. It will supposedly help in the diagnosis of Parkinsons Plus diseases...