Jump to content
  • 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    


  • Content count

  • Joined

  • Last visited

  • Days Won


Everything posted by DaveN

  1. Newest DBS system st Jude's

    You have to be within a couple of feet to establish a connection. I had my SCS upgraded this past summer to a Bluetooth model. The generators only work with apple products and to be more specific, an IPod. Kinda bugs me, because I would prefer to control it with my phone rather than still having to carry a second device. I'm sure the DBS folks have the same issue. Keep us posted on your progress YLopez56. Dave
  2. New guy here - a journey I'd like to avoid

    Yes, your doctor is running these tests to determine what is wrong or rule out diagnosis that can be confirmed through these tests. Parkinson's is a tough disease to diagnose and is usually done by process of elimination and clinical observation. If your diagnosed with PD, you want the doctor to be sure he's right. It's not the end of the world having PD. I've officially had PD for about 3 1/2 years now. My wife suspected it about 4 years ago when she was researching it in regards to her mother. The more she read, the more she determined that I needed to be seen by a doctor. Her mother does not have PD. To this date, only a handful of people know I have PD. I hope you don't have Parkinson's. Listen to Mrs. Supes, she's 100% correct, don't worry about it. Dave
  3. Trying Sinemet

    Patriot, That was the last problem that I recently solved. My last dose of Rytary is 9:00pm but I was waking up without fail between 1:30 and 2:00 to pee. I ended up adjusting my meds. I now take two Rytary at 9:00 and the final pill right before I go to bed which is usually around 11:00pm. Since that adjustment, I haven't had to get up in the middle of the night. Maybe your Doc can prescribe Sinemet CR for bed or even try some Rytary. Just some suggestions... Dave
  4. Trying Sinemet

    Patriot, The Flonase took a couple of weeks before it started helping. My biggest problem is that I don't always take my Rytary on time. When I'm off and have the urge to go, I can't. I just stand there trying to relax while I wait to go. Once I do go, it's start and stop, start and stop - very frustrating. You would think with this problem, I'd never be late with my meds but it still keeps happening. Hope you figure it out. Dave
  5. Skonklin87, This does not sound like Parkinson's to me. The more you research Parkinson's, the more your mind will manifest symptoms. Parkinson's is diagnosed by having two of the main motor symptoms associated with the disease: Tremor Slowness of movement, called bradykinesia Stiffness or rigidity of the arms, legs, or trunk Trouble with balance and possible falls, also called postural instability Twitches are not tremors. Being laid off from your job is an extremely stressful event in your life. Stress can create all sorts of problems that can manifest in a lot of different ways. My advice would be to continue exercising and live your life. Dave
  6. Trying Sinemet

    Patriot, i have the same issue as you do in regards to frequent urnation. My PCP put me on flomax about 6 months ago and li have to admit it has helped some of the situation. I have found that if I don't drink enough water, I still have to go but its droplets.... dave
  7. Opinions on diagnosis

    Cldm, I agree you should request a Dat Scan for your own peace of mind. If it come back normal, it's possible that you could have DRD (Dopamine Responsive Dystonia). DRD is much more rare than PD but its possible. You don't have to have a tremor to have Parkinson's. I've had Parkinson's for quite a few years now and what tremor I have is very minor most of the time. Dave
  8. Not Diagnosed, However Need Advise

    An early diagnosis of Parkinson's will also make the following more difficult: Obtaining Health Insurance because you now have a pre-existing condition. You'll not be able to obtain Long Term Disability Insurance. Life Insurance rates will sky rocket. These are things that everyone should consider. You're not going to die from Parkinson's. Dave
  9. Not Diagnosed, However Need Advise

    EllaAngel, first off Doubleup has been told by a Neurologist and two online Neurologists that his symptoms are not consistent with Parkinson's disease. He has an appointment with an MDS at Stanford coming up to address his symptoms. You of all people should know that it's not healthy to chase or believe you have something when a doctor has told you don't. I hope Doubleup figures out what is wrong so they can get some peace. I believe I am being supportive by giving my honest opinion. To convince someone they have a disease because you had difficulties yourself is not helpful. My doctors were unsure when I was first being diagnosed. If you have Parkinson's, it will become self evident eventually. I only recommend what I did and that is to live your life as best you can. Dave
  10. Janice, why not make an appointment with the doctor and skip your regularly scheduled dose so they can see your symptoms on display? My appointments usually are right around a scheduled dose, so some of my appointments I'm approaching my OFF state. Dave
  11. Not Diagnosed, However Need Advise

    Double up, Your afternoon sleepiness is most likely a result of not getting a good nights sleep. I doubt that Adderall is causing your symptoms. It's not uncommon for an MDS to prescribe it to someone with PD to combat extreme fatigue. Your sleep issues are probably contributing to all or some of your issues. You should consider seeing a sleep specialist to get a handle on that. Waran is incorrect about loss of sense of smell. It's true that most PD patients have loss of sense of smell but it's not uncommon to not have the problem. I personally do not have complete loss of sense of smell, mine is highly diminished. I'd love to be able some a flower again. Parkinson's can be cruel sometimes. We want to help and no you're not wasting anyone's time. I doubt that you have Parkinson's. You need to beware when talking to other members. Some took a while to get diagnosed and therefore assume that everyone else is experiencing the same doubts from the medical community that they endured. Nobody can hide from this dam disease as it is progressive and will eventually rear its ugly head. Don't let your fears of the unknown consume your thoughts. Live your life like there is no tomorrow. You could easily get run over by a bus and then where would you be? Dave
  12. Not Diagnosed, However Need Advise

    Double up, You keep saying you have tremors but have yet to describe where they are. A lot of diseases and conditions have tremors. It would be helpful to all to better describe what you are experiencing. Parkinson's tremors are not high frequency. Do you have them at rest or when you're doing something? Thanks. Dave
  13. Parkinson PSA

    Has anyone else listened to the Parkinson's PSA on the radio? They've been playing them in the Washington DC area over the past month.several times a day.i think they are useful to some but detrimental to those of us that work. The commercials gives the indication that we have extreme difficulties functioning in today's society. I know that's not the intention of the ads but it's my take, Dave
  14. Not Diagnosed, However Need Advise

    Double up, Do your tremors effect both hands? My best advice is to stop thinking about what you may or may not have. Dr. Google is only going to enhance your anxiety and from there you might wonder if your symptoms are real or physcosymatic. Start an excercise program and live your life. Let the doctor do his job when you have your appointment. Dave
  15. Stimulator for back pain

    Jim, I''m going to throw my two cents in because I think its important. If you are having problems with your L4/L5 disc, its best to have it repaired. A stimulator is only going to mask the pain. I have a stimulator and it does work well. I procrastinated for years before I had my back repaired. My problem was originally a bad L5/S1 disc. Because I waited so many years the L4/L5 disc collapsed and L1 through L4 were showing a tremendous amount of wear and tear. My back surgery was 10 years ago and since my back has been stabilized, the degeneration has been slowed down. Dave
  16. George, Whether you take or delay meds is sometimes a hot topic depending on your opinion. One thing I have personally noted from my own experience is if you're focusing on the disease, your symptoms are gonna be magnified quite a bit. First, you need to find things that will distract you from having PD. It's not going anywhere, so fretting about it is wasted energy. Excercise everyday!!!! If you still feel that your quality of life needs something extra, then by all means discuss with your doctor on what they think would be best for you. You could try starting with Azilect to see if it might help (pretty rare if it does, but still worth the attempt). Be careful with the agonists as they can cause some serious unwanted issues. Not everyone experIences these problems, so if you go that route have your family keeps tabs on you. If all else fails, you can go for the gold standard of Carbidopa/Levadopa in the form of Sinemet or the new formulary which is Rytary. If you decide to go the meds route, it might take some time to find the right combination/dose that will improve your quality of life. I take Azilect and Rytary. It took nearly two years to find the dose and timing that provides the best relief for me. Patience is the key when it comes to Parkinson's. It progresses slow, so time is on your side. Regards. Dave
  17. Need your opinion...on Retirement disability

    Stu, I'm quite a few years old than you and I hear you on what you're saying. To be honest, it sounds like your meds aren't optimized. When I was first diagnosed I started off with Mirapex and it really made me tired. I was experiencing a lot of the same issues that you are. It seems like a common theme for some people who take agonists for their PD. I ended up changing doctors and he started me on a low dose of Sinemet (Carbidopa/Levadopa). I now take Rytary (extended release formulary of C/L). My symptoms are controlled extremely well and you would need to be an MDS to tell if I had PD, may be exaggerating or over confident but you get my point. You should talk to your doctor and tell him/her what's going on. If you're ready to retire, then go for it. I'm a programmer and also have other health issues. I could easily collect disability if I wanted to. I still love what I do and the money isn't bad either. 43 is pretty young to retire. I'd personally be bored out of my skull. Dave
  18. Restore Gold

    JDS, I'm not suggesting you refrain from participating in the forum. Although, I have noticed that the only time you participate is to support and push the products that you sell. I found it interesting that you felt the need to reach out to your testimonials to post on this site to support your product. I've had Parkinson's for several years now. I take only what is prescribed by my doctor. Like your testimonials, my doctor is very pleased with my current state. You would not know that I have Parkinson's if you met me. Sometimes you just have to give the doctors and the medicine prescribed to you some time to settle in. It took over a year to stabilize everything and yes even turn back the clock on some symptoms. Dave
  19. Restore Gold

    JDS6958, You need to refrain from commenting on the product you sell and profit from. If anyone else comes on here trying to sell their products, they are banned from the site. Just because you say you have PD does not give you the right to peddle your products that you are profiting from. As for UDCA (TUDCA), We should wait for the results from a real study demonstrating what it does for a person with PD rather anecdotal testimonials from people who may or may not even have PD. Dave
  20. Restore Gold

    PD, From what I understand, you have to add in the factor of how long someone has had PD. Just because someone is diagnosed yesterday, doesn't mean it just started. I have mild dyskinesia but only when I start to wear off (I feel the need to be different). The sad part is if you don't have PD and take these drugs, you'll never get dyskinesia. So, it probably has something to do with disease progression. Dave
  21. trazone

    I take rasgiline (azilect) and trazodone on a daily basis. Check with your doctor if you are concerned.
  22. trazone

    Noah, I've been taking Trazodone for 7+ years. I take a 100mg every night. I take the it around 9:00pm but don't go to bed until around 11. During those two hours I relax and basically let my day settle down. Once I hit the pillow, I'm out within 5 minutes. If I take it just before bed, it takes 30 to 60 minutes before I feel its effects. Regards. Dave
  23. I participated in a study a few years back to see if Azilect could aid in cognitive decline. Unfortunately, I was given the placebo during the trial but have been taking it once the trial completed. It has been very helpful in restoring my cognitive decline and my progression appears to have slowed down. Dave
  24. Hiccup

    Emily, Just wanted to throw out a quick cure for hiccups. Eat a teaspoon of sugar and they will stop immediately. My wife learned of this cure back in the early 70's and we've found it to be true every time. Our neighbour had the hiccups for two weeks straight. His doctor prescribed something for him but it wasn't helping. A teaspoon of sugar made them go away immediately. Dave
  25. Otolorin, Unfortunately I experience this phenomenon. It's not a huge problem but it does occur on a daily basis. My solution is to just ask the other person to repeat what they are saying. I had an Out-Patient Surgical procedure last week to replace my Neurostimulator. I've noted that this problem has gotten worse since then. I'm also interested in what others experience and what they do to combat this issue. Thanks for bringing this up. Dave