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RNwithPD last won the day on October 13 2017

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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    West Tennessee
  • Interests
    Kayaking and Bass Fishing

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  1. 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
  2. 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
  3. 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
  4. Mucus built up in throat after dbs?

    Anytime a foreign object is inserted into your airway your body tries to encapsulate it in mucous and expel it from your body. This is the body's natural defense mechanism. As Kaydee said, using the incentive spirometer forces you to expand your lungs and cough, thereby expelling the mucous. It should diminish after a few days. If not, give your doctor a call. If the secretions are thick, you can take some guaifenesin (Mucinex) to thin it. Kevin
  5. Similarities between Essential Tremor and PD

    My mother and maternal grandmother both have ET. That's why when I first started developing symptoms of PD in 2008 I first thought it was ET. But then I started realizing that it was only happening on my right side. Ironically, or sadly, because of my family history of ET, most of my family is very skeptical that I actually have PD and are hesitant to support my decision to have DBS surgery. Kevin
  6. Official diagnosis today

    I tested negative. Kevin
  7. Having fun with DBS & Blood Pressure

    The carotid artery is pretty deep, and the wires are just under the skin. I would think it could possibly be a broken or damaged wire leaking some current at that location, but it seems unlikely that it would happen in the same location on both sides of your neck at the same time. But then again, anything is possible. Has your blood pressure been okay? BTW...I would venture to guess that the reason your BP went up when you turned off your stimulator has to do with sudden dystonia or tightening of your muscles which constricts your blood vessels thereby increasing your BP. (Disregard...I just realized that you are not the original poster.) Kevin
  8. Approved for DBS

    This link doesn't work. Would you mind fixing it or reposting an entire web address? Thanks, Kevin Never mind...I found it. Thanks.
  9. Approved for DBS

    I just received word today that the DBS team at Vanderbilt have approved me for DBS surgery. I am scheduled to meet Dr. Hamid M Shah, neurosurgeon, at the end of the month. If any of you have personal experience with this surgeon - good or bad - I would appreciate you sending me a message to let me know, as I don't know anything about him. I have been reading a lot about DBS and weighing the risk-benefit ratio. A couple of good books on the subject are: DBS: A Patient Guide to Deep Brain Stimulation by Sierra M Farris, PA-C and Dr. Monique L Giroux, M.D.; and Parkinson's Disease: Diagnosis and Clinical Management by Stewart A. Factor and William J. Weiner. They intend to do bilateral STN. I have to admit that I go back and forth on whether I should have the surgery or not. When my meds are working well, I think that I don't really need the surgery. Actually, I think I need this surgery like I need another hole in my head. And when they're not (and I'm standing in the back of the store unable to walk due to sudden dystonia in my leg and foot), I can't wait to have the surgery. If only I could see into the future and know exactly how it will affect me. I'm sure that those of you who have already had the surgery know all to well what I'm going through. Anyways, just thought that I'd share where I'm at in my journey and hopefully get some feedback on the person who is most likely going to poking around in my brain. Kevin
  10. Parkinson and hand tremor

    Rainbow, There are no home remedies that have been proven to reduce tremor. With that being said, exercise might help to some degree. Otherwise, medication is the only answer, and may not totally stop the tremor until she reaches a high dose - if at all. Every patient is different, so she will just need to work with her doctor on adjusting medications or trying different ones until she finds what works best for her. This typically requires at least monthly visits in the beginning, but if she finally gets the meds adjusted properly she should be able to cut back to once every 6 months. Kevin
  11. New here

    Welcome! Yes...it is extremely likely that you will be an active participant in your kids' activities as they grow up. Most young-onset PD patients progress relatively slowly and remain active for a long time. No...they will not likely be embarrassed about your PD as your tremors get worse. It will be something they see every day while growing up and will most likely not pay much attention to it. As far as work is concerned, it's highly variable depending on how the disease affects you. With respect to the Sinemet and Mirapex, I had exactly the opposite experience. Mirapex was horrible and did little to help. Sinemet has been great for 6 years now. Hope this helps. Kevin
  12. The Problems with Medical Marijuana

    Some interesting points that I had not thought of. I would definitely be interested in trying MMJ in lieu of having the upcoming DBS surgery, but unfortunately I live in TN where it still isn't legal. You mentioned the example of not having your medicine while being in the hospital, which can often be a problem even with the mainstream drugs. I was in the ER this past Spring with the stomach virus and in horrible pain from not being able to take my Sinemet, but I just couldn't seem to get the ER doc to understand the need to get my nausea controlled quickly so that I could take it. They tend to think that it's only a "shaking thing." My MDS also told me of a patient that she had that was admitted to a hospital for an unrelated illness. When the doctors examined her, they questioned who had told her that she had PD because she looked very good to them (she was properly medicated). They then informed her that she did not have PD and discontinued all of her related medications. A few days later they had to call my MDS to ask what to do because the patient had totally locked up and was unable to eat. So beware ANY time that you have to go into the hospital. Again, thanks for the info and look forward to updates. Kevin
  13. Follow the DBS Road

    Man, you've had one rough row to hoe. Hope things get better from here. Kevin
  14. Tell Congress: Vote No on New Health Care Reform Proposal

    As a registered nurse who spent 9 years working in a large hospital, I cannot begin to tell you the amount the truly unfathomable amount of waste in our current healthcare system. In lumping disability with the insurance system, roughly 50% of my patients under age 65 were on disability. Most, for reasons unknown, as nothing in their medical records would indicate that they have a disease or condition that would keep them from working. My fellow nurses and I always said there were three main things that will get you on disability: eating too much, drinking too much, or doing drugs (both prescription and illegal). The point is that a large percentage of money spent on healthcare and disability in the United States is caused by people's poor behavior and poor choices. If we continue down the path we are on, total collapse of the healthcare system is the only inevitable outcome. And this isn't even getting into all of the unnecessary testing and procedures performed just to protect against liability on the off chance that something goes wrong. I have heard many doctors state while they were writing orders that they didn't believe this test or procedure was truly necessary, but they just couldn't take the chance. I have heard some very compelling arguments for both a free market system and total socialized healthcare, and I am really not sure which would be the best solution as both have positives and negatives. However, I believe that we MUST scrap the entire healthcare system that we have now and pick one or the other, as the mixing of the two that we have now is not working. Either way, the real problem is going to be the people who willingly choose to do things detrimental to their health and then expect society to pick up the tab. In my opinion, most everything should be legal, but come with penalties. For example, if you choose to smoke cigarettes - a habit that has NO benefits no matter how you look at it - then you should forfeit your right to ANY social/government support other than assistance in quitting. We have patients in the hospital being wheeled outside less than 24 hours after bypass surgery to smoke! The same applies to Type 2 diabetics. We have so many of them come into the hospital with DKA and do nothing but sit and eat fast food, regular soft drinks, and candy the whole time while we're giving them outrageous doses of insulin to try and get their glucose down. I could literally write a book about what I have witnessed as a nurse - and may do it. People just cannot believe it unless they see it for themselves, though. It was totally infuriating and frustrating as a Parkinson's patient to have to wait hand and foot on many of these patients on disability who were younger and in better condition than I was. They have a total entitlement mentality and don't mind letting society pay for every little thing that they want. Anyways, that's my 2 cents worth. Kevin
  15. Does anyone else have dreams ABOUT your PD?

    Same here. Very vivid dreams after starting levodopa therapy. I now have dreams in which my PD plays a role, such as explaining to people why I'm shaking or cannot run.