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RNwithPD last won the day on May 25

RNwithPD had the most liked content!

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About RNwithPD

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    Advanced Member
  • Birthday 05/27/1972

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  • Gender
  • Location
    West Tennessee
  • Interests
    Kayaking, Bass Fishing, Hiking, Camping

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  1. I came close to having DBS surgery last fall before deciding to wait a few more years. After watching a new documentary just released on Netflix titled, "The Bleeding Truth", which explains the FDA approval process for medical devices, I'm glad that I did. To be clear, this video does not mention DBS impulse generators, but it brought up enough information to make me realize the need for checking out the device the surgeons want to implant in me before I move forward with this. As it turns out, having "FDA approval" doesn't always mean a lot. The video also provided a web address to the Centers for Medicare and Medicaid Services (official government website) where you can search your doctor's or hospital's name and see how much money that have received from pharmaceutical and medical device companies. https://openpaymentsdata.cms.gov/ Once you search your doctor's or hospital's name, you can click on the tab labeled "Payment Information" which appears just below the doctor's or hospital's name to see a breakdown of how much money they received from each company. Kevin
  2. If you have had a joint replacement with a device that contains chromium AND subsequently started having neurological issues similar to Parkinson's or psychological problems resembling Alzheimer's, then I would highly recommend having your blood and urine chromium levels checked. Some research has come to light where the chromium is being absorbed into the body in sufficient quantities to cause these symptoms. The good news is that the symptoms will generally go away completely once the chromium device is removed from the body. Most doctors are still unaware of this problem, so expect some denial if you bring this up. However, a simple blood draw and urine test is all that it takes to determine whether this might be causing your problems or not. Kevin
  3. RNwithPD

    Peeved PreClinical Parkinson's Person

    I'm sorry that you are going through this, although it is a fairly common story in the PD community. Your best bet is to locate a Movement Disorders Specialist (MDS) and set up an appointment with them. They are a neurologist with additional training in movement disorders such as Parkinson's and MS. Technically, there is no such thing as a pre-clinical "Parkinson's patient" because in order to confirm that you have PD you have to be diagnosed first. And because Parkinson's is a "rule out" disorder, they have to watch you for about 5 years to see how you progress in order to confirm the diagnosis. Hope this helps. Kevin
  4. RNwithPD

    Trekking pole walking

    I just recently took a hiking trip and used trekking poles for the first time. They really helped with arm swing, balance, and gait. They also saved my butt in what could have been a very nasty fall down a mountain side. I used the Alpine Summit Explorer Edition trekking poles. They come with several accessory tips for walking on different surfaces, have cork handles that absorb sweat, have fliplock adjustments, etc. Excellent customer service, too. You can buy them on Amazon for $39.95 or direct from the company with free shipping. Check them out. https://www.alpinesummitoutdoors.com/collections/trekking-poles https://www.amazon.com/Premium-Aluminum-Trekking-Anti-Shock-Walking/dp/B073NRYBKN/ref=lp_15756750011_1_1?srs=15756750011&ie=UTF8&qid=1530111066&sr=8-1 Kevin
  5. RNwithPD

    Seeking hiking/backpacking partner (TN)

    Thanks Linda. Dan and I have been communicating and are planning a hike together soon to see how we do. If all goes well, we might give an AT thru-hike a try. Kevin
  6. RNwithPD

    Lyme induced parkinsonism

    Jeff, Interesting information. Since I no longer work at the hospital, I don't have access to the research database. But my wife does, so I am going to have her check into this for me. Thanks, Kevin
  7. UPDRS total score: 56 (out of 199 possible points) Mentation, Behaviour & Mood: 5 (out of 16 possible points) ADL: 14 (out of 52 possible points) Motor examination: 33 (out of 108 possible points) Complications: 4 (out of 23 possible points) This was while on meds. I also had all of this testing done as part of my pre-DBS workup last fall, and seems to be pretty close to what they came up with. I was approved for surgery but decided to hold off a couple years for several reasons, one of which is that I want to do some backpacking while I still can. Kevin parkinsons101.org
  8. RNwithPD

    Lyme induced parkinsonism

    Super, I'm not emotional about the subject. It is highly unlikely that I gave my wife Lyme disease (my ex-wife doesn't have it), but it is an interesting question if Lyme and PD are somehow related. The whole idea of "Chronic Lyme disease" is a hotly contested subject in the medical community right now, but my wife's case and many others like hers are helping to change opinions. As research continues, maybe some day a link will be found. Sometimes conspiracies turn out to be true. Kevin
  9. RNwithPD

    Lyme induced parkinsonism

    I can't say that I have heard of "Lyme induced" parkinsonism, but my wife and I have discussed this issue several times (we are both R.N.'s - she is a Oncology Research Nurse). She started having problems several years ago with extreme fatigue and muscle aches and pains. The doctors pretty much dismissed it because the symptoms were not things that they could actually see. After a year of battling these symptoms, her hair began falling out and leaving noticeable bald spots. The doctors knew then that something was definitely wrong and started running every test that they could think of - until they got a positive back for Lyme disease. They confirmed it with a Western Blot test. The thing is, my wife is not an outdoorsy person. She has had no tick bites of which we are aware, and definitely no bullseye rash. And, according to the CDC, there is no Lyme disease in West Tennessee - despite the fact that numerous people are diagnosed with it in this area every year. Anyway, she underwent 30 days of antibiotics which helped, but does not cure Chronic Lyme disease (long explanation as to why). She has gotten much better, but 3 years later she still has cycles of Lyme flare-ups which are getting less severe every time. But we still don't know how she got it to begin with. In her research, she found some doctors who stated that they believed most Parkinson's patients tested positive for Lyme. I have never had the test, but I did have a tick buried in my scalp for about a week when I was a kid. It left a wound that wouldn't heal very well until I had a run-in with a hedge trimmer a few weeks later and was put on antibiotics after surgery to repair my finger. SO, I can't help but wonder if I am a Lyme carrier and somehow gave it my wife. I also wonder if it is possible that undiagnosed Lyme disease led to my Parkinson's disease. I know that this would be dismissed as a conspiracy theory by the medical community, but I don't think that there has been any real research into it. Kevin
  10. RNwithPD

    10 good years???

    What the neurologist said is a generality, but statistically fairly accurate. However, as others have pointed out, this really depends on your definition of "good." In one study, "[p]atients felt that they were too disabled to work at a mean of 3.4 years after diagnosis." The most disabling symptom reported? Fatigue (49%). Another study on the progression of non-motor symptoms showed that fatigue was associated "with significant life-quality worsening," and that non-motor symptoms generally have different rates of progression than motor-symptoms. I did have another study which more directly supported the "10 good years", but I can't seem to locate it at the moment. The point being, however, that there are research studies that support this idea, depending on how you define "good." For example, is being able to care for yourself and get around on your own but not being able to maintain employment "good" years, or bad? It is possible, though, that some people are saying 10 good years because they read it in Michael J. Fox's book. He states that his MDS told him when he was diagnosed that he would have "10 good years" - so there is another MDS stating the same thing. Anyway, I'm not trying to be negative, just trying to present factual information. Obviously, everyone's definition of "good" will vary as well as their own individual rate of progression. I, personally, think that the "10 year" thing is generally accurate for most people. Kevin
  11. RNwithPD

    Seeking hiking/backpacking partner (TN)

    Dan, I am feeling the same way about my wife - although I don't have children to worry about. I keep going back and forth on whether or not I really want to do this without her. She fully supports my going, but is it worth doing it if I can't experience it with her? I'm not sure. Apparently I have some more thinking to do. Thanks, Kevin
  12. Summary: I am looking for a fellow Parkie that is interested and capable of extended overnight backpacking trips in the Tennessee area, with the express goal of possibly attempting a thru-hike of the Appalachian Trail (AT) next year. The initial trips would be 3-5 day overnight trips to determine whether or not we actually like it; our capabilities; test gear to find what works the best; and get in shape. IF all of that goes well, I want to attempt the AT next year - with the itinerary open to discussion (northbound, southbound, flip-flop, etc.). I am located in West Tennessee. Any tips or suggestions about finding a hiking partner, fund-raising, raising awareness for PD, etc. would be appreciated. Detail: I am a 46 year old male diagnosed with PD in 2011 after noticing the first clear symptoms in 2008. I was forced to leave work (Registered Nurse) in July 2017 due to a loss of ability to hand-write, type more than a few sentences, adequately control a computer mouse, fatigue, and dystonia in my right leg - among other symptoms. I was approved for DBS surgery last fall, but decided to hold off for a while due to several reasons, such as an improvement in my symptoms after leaving work and the realization that once I have a generator pack installed in my chest I will no longer be able to carry a backpack. Once I left work my stress levels dropped dramatically. I started exercising, eating healthier, and taking vitamin supplements. My walking improved dramatically, and I found that I was able to go hiking. Since then, my wife and I have taken several day hikes including two days on the AT up to the top of Roan Mountain and across the balds north of Carver's Gap. I had no problems and loved every minute of it. I intend to have the DBS surgery probably in 2020, so I feel like next year is my final chance to thru-hike the AT if I am ever going to. To be clear, I have not decided 100% that I am going to do this. That is why I want to take some shorter test trips this year to see if I can handle multiple days of hiking and camping. My wife is employed and won't be able to go, but I feel that I would be more likely to finish if I have a hiking partner. Plus, if the other person has PD as well, hopefully we can be more understanding of each other's abilities and limitations; as well as raise awareness of PD along the way. Thanks in advance for your assistance. Kevin
  13. RNwithPD

    Frustrated by lack of young onset services

    I live in an area similar to what you have described and have had the same issues. Because I am a candidate for DBS, I was hoping to meet some people locally that have had DBS surgery. So, I decided to go to our local Parkinson's Support Group meeting at the hospital. Long story short, I was the only person who showed up. I confirmed that I was at the right spot at the right time with two different sources. I even tried some other online support groups, but found that 90% of the members hadn't been online in over 6 months. I have tried some other things as well, but have finally given up. This forum is the best thing that I have found. Kevin
  14. RNwithPD

    Approved for DBS

    Thank you all for your responses. As I told my MDS, if we were talking about a bypass surgery I wouldn't be worried all that much - the worst that can happen is death. But when working on my brain, I might not come out of the O.R. the same person that I was when I went in. The reason my wife can't get Tuesday's off right now is because that is the day that she teaches clinicals for nursing students. It's a second job that she took on when I had to leave work, and it's the only day of the week that she works for the university. She is under contract for the entire semester. I would love to be able to check out other DBS centers, but I cannot see any way that we would be able to afford that. Besides, I feel pretty confident in Vanderbilt's doctors, just not their support staff. As seemingly disorganized as they are right now, it concerns me about the prospects of getting the follow-up care that I will undoubtedly need access to in a reasonable time-frame. Again, thank you for all of your comments. I will continue to ponder this over the weekend and hopefully make a decision the first of the week. Sincerely, Kevin
  15. RNwithPD

    Approved for DBS

    Right now I'm seriously considering not having surgery. When my doctor and I agreed to move forward towards DBS in July, she said that the DBS coordinator would call me to schedule everything. They called several days later and scheduled an appointment for me to come in and do the videotaped assessment as well as the psych exam. On the day of the appointment, I showed up at my doctor's office to check in, but they didn't have me on the schedule. I explained the reason why I was there, and the receptionist started making phone calls. After about 5 minutes, she put me on the phone with a lady who said that I was at the wrong location. She said the directions to the "physical therapy" center was in the packet of information that they sent me. However, I never received a packet of information. The lady on the phone apologized and said that the DBS coordinator who scheduled my appointment was no longer working in that department, and that she must have forgot to send me the package before she left. After waiting several more minutes, the receptionist received a fax with the directions to the physical therapy center and gave it to me. Needless to say, I was late for the appointment and I wasn't happy. Upon arriving at the physical therapist's office, I noticed that the person who had signed in before me had the same last name as me - which isn't very common. The physical therapist stated that they had quite a bit of confusion because they thought that the other gentleman was me. But after several things didn't add up, they started checking birth dates and realized that they had two men with the same last name scheduled for pre-DBS assessments on the same day and at the same time. Not exactly what you want to hear leading up to brain surgery. And when I got to the psychologist's office the next day, I had to sit and fill out forms that were normally included in the previously mentioned package that should have been mailed to me before the appointment. At that point, I was fairly irritated and not feeling extremely confident about having surgery there; but my wife assured me it's just a simple mistake and not to worry about it. After waiting for about 3 weeks, my doctor messaged me and said that the DBS board had approved me for surgery and that the DBS coordinator would be calling to schedule an appointment for the surgeon. The next day - which was Thursday of last week - she called and scheduled a surgical consultation for Tuesday, October 31st. When I told my wife about it that afternoon, she reminded me that Tuesday was the only day that she couldn't get off of work and that she would like to go with me. So, on Friday morning I called Vandy and asked to change the appointment to another day, but the lady said that Dr. Shah only does appointments on Tuesdays. After hanging up, I realized that I now had two problems: 1) I need a consultation appointment on ANY other day of the week EXCEPT Tuesday; and 2) if Dr Shah is in his office on Tuesdays, then he won't be able to perform Phase II of the surgery on a Tuesday - the ONLY day that my neurologist can be in the O.R. with me. I had already decided that I absolutely wanted her there with me during placement of the electrodes because if something goes wrong, she knows me and will be able to recognize it faster than anyone else. SO...I called back and asked for the DBS coordinator. After holding for a few minutes, the receptionist told me that they were both out of the office and that I would need to call back on Monday. I asked for a number so that I could call them directly, but she said that they didn't have a direct number and that I would have to call her back and ask to be transferred. On Monday morning of this week, I called Vandy back and asked to be transferred to one of the DBS coordinators. The phone rang several times and then a voicemail picked up. The message stated to leave my name, number, date of birth, and a detailed message as to why I was calling. It also went on to say that it might take 24-48 hours to receive a response and for me NOT to leave additional messages as this would just increase the time it would take to get back to me. So, I left my message and stated my name, birth date, and phone number at the beginning and end of the message. After hanging up, I wondered why I couldn't have just left a message on Friday instead of calling back on Monday!?!?!?!? Anyways, as of today, Friday, I have never heard back from her. I'm beginning to feel like maybe it just isn't meant to be for me to have this surgery right now. For one thing, I feel like I'm having to beg to have it. And then I also think that if I'm having this much bad luck leading up to surgery, that it doesn't' bode well for the surgery itself. Am I just letting pre-op jitters get to me, or would you all be worried about all of this as well? Sorry so long. Kevin