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citabriapilot last won the day on February 13 2015

citabriapilot had the most liked content!

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About citabriapilot

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  • Birthday 11/16/1950

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    six lakes michigan

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  1. citabriapilot

    Drifting....in faster waters

    NN good to see you. I'm lucky I haven't too many cognitive deficits. There is always "that word" in conversation that I can't pull out of my mind. I know what it is, I know what it means, I can almost see it, but I can't say it. Conversations slow to a halt as I continuously search for that next word. Lots of apathy. I've never been the best house keeper but now....I often live in a pig sty with no desire to clean it up. Marciaj, I understand the running into things that are right in front of you. My doorways move a lot as I walk through causing me to plant my body midway. I blame it on the walls and doorways because I have no idea how to explain my inability to miss them.
  2. citabriapilot

    Thanks PD

    My dogs give great comfort but cannot understand why I am afraid. Therefore I do not show my fear around them. While the fear remains I do have hope that my fear is baseless. The stress is not good for my PD though. I've noticed flair ups. Things will get better, they must!
  3. citabriapilot

    Saw my MDS yesterday

    DB and Linda, been the whole second opinion route and there is no one left to go to. While my area has one large Parkinson's treatment group and one smaller I am barred from trying the smaller newer group. I tried to visit a doctor there to see if I might like them better but you had to go through a gate keeper to get in. My gate keeper appointment did not go well with the neurologist telling me to get out, that I was a lying (I believe he used the word psychopath) and don't ever come back. This was after a 10 minute meeting. So I can't get into that group. No, I believe, my MDS to be among the best in the area (although, it didn't start out that way. Hence, he nickname of she-devil.) Miracleseeker, I actually have a doctor who I do "thank my lucky stars" to have. He is my primary care physician and stood by me when we worked 3 years to find out what was causing my severe shoulder pain and all the other doctors said it was in my head. Turned out to be PD.
  4. citabriapilot

    Saw my MDS yesterday

    I​ saw my MDS yesterday for my 6 month checkup. Nothing new. In fact, I'm not even sure why I go. I don't want to cancel appointment because as we all know getting a timely appointment is next to impossible. Yet, she has nothing to say. I have very little to say. I told her I had more trouble walking, that my neuropathy feels different in the morning (my legs feel wooden half way up my calves; I asked whether I might fit under PIGD? I asked if she had any more ideas as to what was wrong with me so that I might have an idea of what I am looking forward to. (I do not at all follow any of the normal things that are expected with PD but my DatScan was abnormal and I react well to Sinemet.) She had no real answer. It is an exhausting 1 1/2 hour drive to her office, so why do I even both to go? Keep the appointment just in case I do need it 6 months down the road or just say the hell with it and continue on as I am.
  5. citabriapilot

    Thanks PD

    For those who won this election I truly hope it turns out like you thought it would. For those who lost I desperately hope it doesn't. I think maybe I'm glad I have PD and may not have that long to deal with it all. Tomorrow I probably won't feel this way but allow me my silliness.
  6. citabriapilot

    Janet Reno

    Janet Reno, former US attorney general under Bill Clinton has died at 78 from complications from PD according to the Associated Press.
  7. citabriapilot

    They mean well

    I can't say I get this a lot. Mostly because I'm not a very social individual so I'm not around others all that much. I do, however, have a SIL, who belongs to a slightly fringe group, that encourages their members to embrace some off the wall medical ideas. Besides pushing for me to join her group (not going to happen as I am ideologically diametrically opposed to everything the group stands for) she is constantly pushing some new super cure at me. I'm not sure whether she has any clue as to what PD really is, I rather doubt it. I usually say "interesting, I'll look into it." then try to change the conversation. Does it work? Not too often, but I'm trying to keep peace in the family. Later, I try to explain why her idea was not viable for me. Then we spend some time going through the "buts...if you only's....and maybe's....I heard's....". Somethings never change and sometimes you just have to shrug and walk away. Sometimes something might seem to have possibilities so I spend a few minutes later researching. Usually no, no help.
  8. citabriapilot

    Preparing for a stressful & active holiday season

    I don't celebrate the holidays so this is not something I need to worry about, but I think you my have found the key in your last post. I have found that, not taking a larger dose, but allowing myself an extra dose, if necessary, is best for me. If I become stressed an feel as if my meds are not working, I take another dose. Now I'm not adding a dose so much as moving a dose up sooner, since I then find once the stressor has gone away, or lessened, I may not need my next dose right away. Yes, I know, this goes against a lot of what we are told, such as regularity in dosage time is best, but I'm not talking of doing this on a regular basis, just as an emergency contingency. This, at least for me, has worked often.
  9. citabriapilot

    Does anyone worry about Lewy Body Disease?

    I also worry about dementia. My mother died from Alzheimer's. My father died from an unrelated disease but he also exhibited some dementia. I have a cousin with PD who also has Lewy body dementia. I sometimes feel like dementia is stalking me from every direction. From what I've read all PD patients have lewy bodies present, just not all get Lewy Body dementia. I know that this doesn't help at all with your fear of misdiagnosis or that he may have dementia. Sorry
  10. citabriapilot


    The only med I'm on for PD is Sinemet. It actually handles most my problems except for some of my pain. I'm not eligible for DBS because it make falling worse. I'm contemplating trying medical marijuana but in my state Parkinson's disease does not qualify. However, intractable pain does. Like many of us, I am in constant pain. I find it hard to believe that until recently Doctors did not recognize pain as being part of PD. All in all I'm doing quite good. PD hasn't interfered with my life too much. I have started to work out for a couple of hours each day in a pool near me. I find that wile in the pool I don't hurt as much o I give myself a mini vacation every day.
  11. citabriapilot

    Any Aviators?

    I don't actually mentor but I have bee young Eagle Coordinator for our EAA chapter. I have truly enjoyed seeing the wonder on the young faces when they have just flown for the first time. We also ran a program for a while we called Grey Eagles where we gave rides to senior citizens.
  12. citabriapilot


    Yeah I'm being seen by a movement specialist and I've been through physical therapy twice. Once or PD issues and once because I have peripheral neuropathy. That's another reason why my MDS doesn't know where to classify me. I'm not diabetic but I lost all feeling in my right foot within a month and the next month lost all feeling in my left foot and 3 fingers of my left hand. Was sent to a physiatrist and there is no obvious nerve damage causing the neuropathy.
  13. citabriapilot


    my experience started with falls and severe shoulder pain. I've been to multiple neurologists and for 3 years they couldn't find anything wrong so I was told it was all in my head but my family doctor would not accept that. Finally we found a doctor who decided to try sinemet. The pain in my shoulder went away and stays away as longa s I take my sinemet. If I am late taking it my whole body feels as if I have restless leg syndrome. The closes variant to me is one of the atypical parkinson's PSP except I do not have the problem with my eyes. I went to a lecture last week on PD and the guy mentioned PIGD but said it wasn't common and did not want to confuse people by talking about it I know it doesn't really matter what the name of my disease is, but I keep hoping we will come up with an idea because it might help with treatment. I lose my balance a lot, walk like a drunken sailor, I use a walking stick just to try to keep me going in a semi straight line.
  14. citabriapilot


    I'm trying to find more information on the PD variant PIGD or Postural Instability and Gait Disorder. I can find brief mentions of it and a couple of research papers, but what I would like is a description of what symptoms fall under this classification. I am among the 30% (?) of patients who do not have tremors. In fact if you look at the list of qualifying symptoms for PD I don't have any of them and do have a lot of the symptoms that are considered disqualifying for PD such as bilateral symptoms, early falls. Yet my DatScan showed positive for PD and Sinemet works wonders for me. My doctor who is a movement specialist doesn't know how to classify me or what is wrong with me. I was hoping to be able to take the symptoms for PIGD in when I see her again in Nov. and ask about it. Has anybody seen any information that I may have missed on this variant? Kathy
  15. citabriapilot

    Any Aviators?

    I'm a pilot, A & P and Avionics technician. I had to give it all up because I can not afford to go after a waiver, no longer have the dexterity to do the work or have the stamina to work outside in the heat. On a different topic: Hi Tom, Abnormal, etc. run for the hills I'm back