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About gomindfully

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  • Birthday 01/17/1969

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  1. gomindfully

    Accuracy of genetic tests?

    Although I realize that you are not genetics counselors, I just want to get your educated opinion. I was diagnosed with PD in 2014, after having symptoms for four to five years prior (but didn't know at the time that they were PD related). Two neurologist evaluated me (both telling me that I probably had parkinsonism - young onset PD) and referred me to a Movement Disorder Specialist who confirmed a PD diagnosis. I signed up for research trials including having MJF Foundation pay for my genetics tests. I was employed as a psychologist, but due to bladder issues, tremor, poor sleep (and obstructive sleep apnea), writing problems, etc., my MDS supported me discounting my work and going on disability. He had examined me numerous times over a two year period. I regretted quitting my job (which had high pay) but I am able to get by on disability. I had good clinical response as dosages of Sinemet increased. He also helped me work through denial, combined with my PD support group during that time. Recently, he stopped seeing his outpatients and moved to a teaching position. I had to go to seek out a new MDS. Guess what? On my first visit, my new MDS didn't think I had PD due to not seeing much rigidity on the arm tests, combined with my age of 48 (now was 46 at diagnosis). I am now planning on getting another opinion. Anyway, to make a long story short, I am allergic to the radioactive dye used in CT, SPECT and DAT scans. I had a CT scan in the past but had a bad reaction. I never had a DAT scan, but the new MDS doesn't think I have PD, yet stated that if I had a DAT scan would reconsider. Not only am I allergic to the scan dye, my insurance would not pay the full cost. I had the past genetic tests which showed autosomal dominant positive homozygous on NSF gene (gs249), many SNCA mutation variants including homozygous on (rs199533, rs2736990, rs356219, etc.), and newer studied mutations like LINGO1. Therefore, my question is, are these genetic tests accurate to the extent that they would help with the overall diagnostic picture?
  2. gomindfully

    Handling the "You don't look sick" times.

    I should have clarified a bit. The line pass does not allow you to actually go to the front of the line, but enter through a special entrance (typically either an exit to a ride or an area which allows access with no steps). For long wait rides, you are given a time to get on the ride by the person running the ride after they estimate how many people are waiting, (so say he says your will board this ride in 20 minutes at 1:30pm) and his or her estimate is in mostly based on how long you would have been standing and moving through the turnstiles to get to the point of getting on the ride. After he or she gives you the boarding time, (as Dave said) you sit and wait, and watch the time and then get on the ride at your scheduled time, or you miss getting to ride the ride. What frustrates others in line, is that when it is your boarding time, they alllow you to get on (in front of everyone) and have your pick of a seat, and to many, it appears that you didn't have to wait, nor stand in a long line - which it true to the extent that you didn't have to physically stand in the line. It is still an accomodation. For those who have trouble standing (in heat at that) for long periods, it helps alleviate fatigue. Many rides have steps, and it also prevents being a fall risk if you have trouble with balance. Patriot, I totally understand where you are at in your position on fighting the illness with exercise and hope that with exercise that you don't have any more progression in your illness. I would also agree with you that there are many people who seem to take advantage of scooters, when they would probably benefit more by walking. There are also those who enjoy accomodations or special treatment. I do appreicate your strong opinion, as I asked for everyone's opinions. I am one that doesn't enjoy having this illness, which may seem strange as I have the name Pdude here and because I have a blog - even with that, no one in my personal life knows me as being "Pdude" - thank goodness. There was a time, when almost no one outside my family was even aware that I had Pd. My blog was my way of allowing anonymous frustrations and comments to be vented, with me having some level of anonimity. I don't ever feel as though I am taking advantage of a disability - my question was more based from my concern about other's perceptions of why someone who may not physically be in a wheelchair, be able to get on a ride, or maybe not even so much that ,but just my growing awareness of being in the spotlight and then getting stared at for being different. I think it is hard for many to accept any help or be in a situation where you are seen as different, particularly for someone who has been self-sufficient and never envisioned ever being in the place of needing help, assistane or accomodation. Many good comments! We all seem to have different philosophies and ways of handling our condition. Thanks to all!
  3. gomindfully

    Handling the "You don't look sick" times.

    Thank you SWVA, I will try to avoid worry about what other people think, good point about these people being ones that I will never see again. I also may do the wheelchair idea. Thank you so much!
  4. gomindfully

    Handling the "You don't look sick" times.

    Johnny's: I am relieved to hear that someone else has myoclonus - I had mild myoclonic jerks and twitches going back to adolescence, I wonder if these pre-diagnositic myoclonic movements were foreshadows or indications of Parkinson's? Back to my topic: I do need to practice letting go and accepting that there will be rude comments, stares, etc. from others: some because they see my disability and just want to gawk at me, others due to sympathy (or pity), and some wondering if I am faking it for "perks" or special treatment. It is just intimidating when it happens in a situation like I described (and this former martial arts fighter is not easily intimidated). I have also heard the spoon theory analogy that you mentioned and like it. Thanks for your comments!
  5. I think that by now my symptoms are pretty apparent to most people. Yet, I dread the times when I get stares when I vaguely pass off as "normal" to others, due to looking younger than my age (46). More specifically, my kids want to go on a mini vacation to an amusement park. Last time I was there, I became so worn out that I found out about the line pass that allows you to skip the long lines and get on rides through a special entrance to each ride (usually the exit). I do not require a wheelchair (yet). I have used this pass once before and it was an in the spotlight kind of experience: I was well aware that those standing in the long lines waiting for the ride would give very dirty looks to me as I was allowed on the ride ahead of them, with some even making whispering rude comments (yes, even though I used my cane and stumbled and had difficulty getting on in a timely fashion and getting buckled). I almost feel the need to explain myself to these onlookers. I imagine most of you will say something along the lines of "if you need to use accommodations, who gives a crap what others think?", which I agree with, yet practically, when you do find yourself in situations where you have a whole crowd staring at you (not just a few people - like if you need to park in a handicapped space and look "too young" to be parking there despite looking like you are about to fall because of the unsteady ground and curbs you have to stumble over), then it is an intimidating experience even for those of us with thick skin. The alternative to using this line pass would be my waiting in long lines in hot heat and then probably wearing out and needing to leave and rob my kids of the experience. I would like to hear your thoughts and experiences. Maybe If you have not used a line pass at amusement parks you could chime in about some of the "but you don't look sick" reactions you may have received from people oblivious to any of your observable symptoms.
  6. gomindfully

    Social gatherings, friends reactions

    Telling others, or having others discover your PD, is such a mixed bag. You get the hugs from some, the OMG you are dying look from others, and at some point, you will face comments that make you want to grit your teeth so hard and spit venom out. Sometimes the worst comments will come from the most unlikely or unexpected of people or at times when you may be least prepared emotionally to hear them.
  7. I also agree with all the above, for the exact same reasons.
  8. gomindfully

    Experiences With Being Diagnosed

    My symptoms that were missed were very similar to arthritis or even MS symptoms, which is what the doctors were looking for - at one point I was even thought to have psoriatic arthritis. So, in 2011, I didn't have tremor, I had: stiffness, shoulder locking, I noticed my balance was off (I did Judo so I was more aware than most of even the slightest changes in balance), I was having the kind of rigidity that you get when you have been in a car for six hours straight and then try to walk (without the six hour car ride- just waking up or sitting in a chair would do it), I was having some visual disturbances (vision going dark sometimes with exertion - not a common PD symptom), panic attacks, and by 2012 episodes of extreme fatigue - that summer I felt like sleeping all the time, plantar fasciitis type symptoms in my feet, a decline in facial expression (people thought I was mad or upset all the time), and some speech changes. I knew something wasn't right, but at the time I was 42 and people said "it is just part of being over 40, it's stress, etc." My tremor wasn't noticeable until early 2014, so my PD started with rigidity and bradykinesia. My PD has progressed more rapidly than many people's, which I hear is more common in people who rigidity and bradykinesia are more prominent than tremor.
  9. gomindfully

    Experiences With Being Diagnosed

    Jallenhull, I have had prominent PD symptoms since about 2011, and had seen several doctors including a neurologist, all of whom missed it until summer of 2014, when I seen a neurologist who called in a movement disorder specialist. By 2014 though, I practically had a sign on my head that said PD, as my symptoms had progressed. I am not angry - because since then I have learned that most primary care doctor's - and even many neurologist (I know it doesn't seem right), don't know how to properly diagnose PD or assume erroneously that you can't have it until you are much older. In a way, I am glad that it isn't over diagnosed or that they are very cautious before giving someone a potentially life altering label. However, it does frustrate me the lack of knowledge and some people on this forum have been harmed (or at least not helped) by some physicians' ignorance. Interestingly, if it is PD, it will progress to the point of being pretty obvious (but I am not advocating for somebody waiting as that could end up being many good years wasted on a lower quality of life than what could be possible by it being diagnosed and treated). So, I too am very glad that you are going to see and MDS! Sometimes even after we are diagnosed and scream of PD, we still get doubting medical professionals, friends, extended family members, etc.
  10. In the future, I plan on finding another primary care physician - because, for me, it is very important that a doctor have some understanding of PD - not that I expect a primary care to have the same knowledge as my movement disorder specialist, but I need someone whom I feel confident with. If anyone near the Kansas City area has any suggestions for a primary care that has a good understanding of PD, let me know (or privately message me).
  11. gomindfully

    Nonspecific White Matter lesions

    Magnus, Not to minimize MS, but in my humble opinion, I would gladly take MS over PD (speaking from my own experiences with PD).
  12. gomindfully

    Mindfulness as therapy

    For those interested in Mindfulness and psychology, you may want to check out something called "Acceptance and Commitment Therapy" or "ACT", a good simple starter book is "The Happiness Trap" by Russ Harris, MD.
  13. gomindfully

    CPAP Machines and Sleepyhead software

    I am adjusting but must admit my wife hates my CPAP machine because I usually at some point roll over in such a way that the "exhaust port" on the front of the mask blows right in her face - waking her up. I too am getting about five to six hour of sleep and still having some nocturnal (and daytime) acid reflux difficulties. I am having difficulty swallowing and coughing during the day and can't figure out if acid reflux is causing the problem swallowing or if my Pd is causing difficulty swallowing which in turn is making reflux worse. Meds like Nexium used to be the answer and now nothing seems to be working. I am having to use a combo (baking soda, Zantac, and Nexium) just to sleep without waking up with my throat burning.
  14. There are many different tests that neuropsychologists and psychologist use - each measuring different things (short term memory, long term memory, executive functioning, ability to organize things, ability to rapidly comprehend something). Depending on the tester, they may have a preference for a certain number (or battery) of tests. There are so many Cognistat, Woodcock, MME, Weschler, WAIS, etc. Depending on how many tests are administered, you can be there from two hours to all day (usually not more than 6 hours as that would be too exhausting. You may find yourself getting frustrated as the tests may start out easy and progressively get harder. Some tests done that show some potential defects, may then elicit the tester to provide additional testing in that area (i.e. if you displayed some short term memory issues on one test, another test may be administered to further test your immediate recall ability). Some tests may be timed, which can be stressful. You may be asked to put things in a sequence, draw an object, memorize shapes and draw them, determine the next logical connection in a sequence pattern, make an observed object out of little squares that you were shown in a picture, repeat things that you were told earlier in the testing session, etc. I have both been a test giver (many years as a psychologist) and have taken these tests - both professionally and as a patient. Remember that it is to determine things and designed to give insight into some cognitive areas that are difficult for you. You may think you did poorly, but actually compared to others in your age group, have done great - or you may feel that you done great and learn that you have some deficits. Relax and do your best. There is really no way to prepare for these types of tests, nor would you want to as it could skew the interpretive results. Wear comfortable clothing and try to get good sleep the night before.
  15. Good news! He (my MDS) talked to her (my PCP) when she called him and he educated her about young onset PD and he filled out paperwork and told me he would make sure my symptoms were well documented. He said most primary cares only get about two weeks of training on neurological and movement related disorders and not to blame her. I love this forum/community and (as always) thank you for the supportive comments!!!!