Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

RNwithPD

Members
  • Content count

    276
  • Joined

  • Last visited

  • Days Won

    19

RNwithPD last won the day on October 13

RNwithPD had the most liked content!

Community Reputation

169 Excellent

About RNwithPD

  • Rank
    Advanced Member
  • Birthday 05/27/1972

Profile Information

  • Gender
    Male
  • Location
    West Tennessee
  • Interests
    Kayaking and Bass Fishing

Recent Profile Visitors

275 profile views
  1. 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
  2. Official diagnosis today

    I tested negative. Kevin
  3. 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
  4. 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.
  5. 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
  6. 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
  7. 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
  8. 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
  9. Follow the DBS Road

    Man, you've had one rough row to hoe. Hope things get better from here. Kevin
  10. 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
  11. 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.
  12. Bible Verses....

    This is not always what people want to hear, but it does relate to why "bad" things happen - such as getting PD. Ecc 9:11 I have seen something else under the sun: The race is not to the swift or the battle to the strong, nor does food come to the wise or wealth to the brilliant or favor to the learned; but time and chance happen to them all. - NIV
  13. Neck & Shoulder Issues

    Bill, It could be several things: Some type of chronic injury. For example, I had a lot of shoulder/neck pain that I attributed to the disease, but turns out I had a pinched nerve in my neck. Surgery fixed the problem. Sinemet, itself, has shoulder pain listed as a side-effect. So it could be the medicine. It could be that you are under-medicated and the pain is the result of tight muscles caused by PD. I would go to your general practitioner and ask for an MRI of your neck just to rule out any issues there. If that comes back negative, then I would go to your neurologist and try increasing your Sinemet and see if that helps. Kevin
  14. Pain in the leg

    Have your Vitamin D level checked. Low Vitamin D was causing me to have similar symptoms. I now take 5000 Units of Vitamin D3 daily and have no problems unless I run out and don't take it for a few days. Kevin
  15. DBS Benefits & Un-Benefits

    I found some more research on the topic of speech disturbances in DBS vs. non-DBS study groups if anyone is interested. http://www.dbs4pd.org/media/file/DBS-SpeechReport-withReferences.pdf Kevin
×