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Everything posted by DaveN

  1. DaveN

    Mired in Muck

    John Hoefen, i completely agree with Stump. Please check your partisan politics at the door. It just gets everybody riled up and taking sides. Most of us have Parkinson’s or support someone wit it. Papa57, I feel your pain and concern. I’m a couple of years behind you and am struggling to figure out my future and the love of my life. Keep us posted as you figure stuff out because it is useful to everyone. Cheers. Dave FYI John H.: We are not a democracy but rather a representative democracy, which is a form of democracy. A direct democracy makes laws (and other government decisions) predominantly by majority vote. Some lawmaking is done this way, on the state and local levels, but it’s only a tiny fraction of all lawmaking.
  2. I would suggest you see a spine specialist. This report might be indicating that you have cervical and lumber nerve compression in your spine. See either a Neurosurgeon or Orthopedic Spine Surgeon. Don’t let the surgeon title make you nervous, they’re the experts in that area. Dave
  3. DaveN

    Early onset PD

    Sjrcle, With his age, he should definitely consider a DatScan. In addition to the clinical diagnosis, he would have something tangible that you can see which will reduce any doubt. If he's not seeing an MDS, then he needs to see one. Dave
  4. DaveN

    URSODIOL - A Potential New Drug for PD

    Fred, The article is nice and summarises UDCA/TUDCA. It should be noted that the article does show concern with those that have Diabetes and both UDCA and the supplement TUDCA should only be taken in concert with your doctor with strict monitoring. Maybe someday we’ll know more about this. As it stands, the article does not include anything new. Let’s see what happens with Prof. Bandmann’s clinical trial. It still has a long road to travel. Dave
  5. DaveN


    Normally, I'm a very level headed calm person, except when I'm driving :). I've been on Rytary since it was approved by the FDA. On a couple of occasions, maybe 4 or 5 times over the past couple of years, I've experienced extreme anxiety. The last time was an outburst on vacation with the family while I was looking for a parking spot. Needless to say my family wasn't pleased with my behaviour nor was I. It sucks when your not in control of yourself. I suspect that my Rytary dose hit me all at once rather than spread out over the 4+ hour period as usual. I see my MDS next month and will make a point to discuss this issue with him. Dave
  6. Sventory, I have Parkinson's, so my dopamine production is already compromised. I take Rytary every 4 1/2 hours to supplement my lack of dopamine. My doctor is more concerned about me injuring myself while sleeping. I'm not sure how you know I'm taking too much Melatonin. My doctor has recommended that I can go up to 10mg. I'm pretty sure that my doctor knows more about me than you and I will continue to listen to his advice. I'm not offended but will give a small bit of advice. Most MDS doctors work with their patients to devise a plan to provide the best care possible. Suggesting that you may know better may not always be taken well. Melatonin Dosing Recommendations: https://www.verywellhealth.com/how-to-take-melatonin-3015192 https://www.sleepassociation.org/sleep-treatments/melatonin/ https://www.healthline.com/health/melatonin-overdose#recommended-doses Higher doses are recommended for those with REM Behavior Disorder as noted in: https://www.verywellhealth.com/melatonin-can-treat-rem-behavior-disorder-3015212 Dave
  7. Sventory, Do you still swing your arms when you walk? How’s your sense of smell? I’ve read, don’t remember where, that long term use of melatonin can have the opposite effect on sleeping. I take 6mg of melatonin plus 100mg of trazadone on the weekends. To much trazadone and melatonin leave me hung over and fatigued the next day. I do take 50mg of trazadone on work nights. Many years ago my pain management doctor gave me some great advice about waking up in the night - accept that it happens and don’t stress over it. I find it easier to fall back asleep when I follow that simple rule. My MDS wants me to take the melatonin and full trazadone dose every night because I sleep walk and he is concerned that I will injure myself. It’s hard to work when you’re hung over every day. Dave
  8. Sventory, My rigidity crept up on me over several years. I really wasn't aware of it, just kept getting up earlier and earlier to get ready for work. My first real symptom was when my wife noticed that i didn't swing my right arm when I walk. We thought it was funny at the time and became a running joke for several years. I thought all my symptoms were just a part of ageing. If not for my wife researching Parkinson's for her mother, I'd probably be pretty miserable right now. Dave
  9. Sventory, Is your MRI of your spine or just your brain? It might be an issue with your spine. It couldn’t hurt to make an appointment with an Orthopedic spine specialist to be on the safe side. Parkinson’s normally presents on one side of the body before it progresses to the other. I was diagnosed a little over 4 years ago with symptoms dating back approximately 6+ years. My symptoms are still on one side only. I do not have the muscle tension/cramping that you are describing. It could also be some form of dystonia. Give the doctors a chance to figure out what is wrong before you start self diagnosing yourself. You’ll worry yourself sick and that won’t be helpful to your state of mind. Dave
  10. DaveN

    33m. Worried of YOPD

    Zero, You should be relieved that it’s not PD. I’m really happy for you. Get some help with your anxiety and see where that takes you. Go live your life because nobody knows what tomorrow brings. Dave
  11. DaveN

    Struggling with family relationships

    Gardener, Thought I’d throw my two cents into the discussion. I struggle with fatigue on a daily basis. What I have discovered is that when I take a 100mg of trazadone the night before, I’m a little sluggish the next day if I am not active. Like Stump, I also take Rytary and have discovered that it will contribute to my fatigue when I am less active. My solutions are to take half my trazadone dose on work nights. This means my sleep is less than optimum but I am resting. If I know I need to focus at work in the morning, I’ll skip my morning Rytary. This leaves me very stiff but when your sitting on your butt at work, what’s a little rigidity gonna hurt. The bottom line is I’m learning to tinker with my medicine to improve my functinioning. It’s a balancing act and seems like I’m constantly robbing Peter to pay Paul. i hope you find a way to cope with your fatigue. Dave
  12. DaveN

    33m. Worried of YOPD

    Zero, I am not in charge of the forum and you are not clogging it up. I am concerned that you have convinced yourself that you have Parkinson’s when your symptoms just don’t line up. From michaeljfox.org: The cardinal symptoms of Parkinson's disease are resting tremor, slowness of movement (bradykinesia) and rigidity. Many people also experience balance problems (postural instability). These symptoms, which often appear gradually and with increasing severity over time, are usually what first bring patients to a neurologist for help. Typically, symptoms begin on one side of the body and migrate over time to the other side. There is no objective test (such as a blood test, brain scan or EEG) to make a definitive diagnosis of Parkinson's disease. Instead, a doctor takes a careful medical history and performs a thorough neurological examination, looking in particular for two or more of the cardinal signs to be present. Please try to keep an open mind and let your doctors do their job. I suspect that if you try to lead a doctor down the path you think is correct, they aren’t as effective at their job as they should be. I really do hope they figure out what is wrong with you. It’s no fun to be concerned over the unknown. Good Luck. Dave
  13. DaveN

    33m. Worried of YOPD

    Zero, My Best advice to you is to give it a rest. It is obvious that you are obsessing over this. I take you at your word that you’ve read every post on this forum. That’s rather extreme if you ask me. You say you hope you don’t want Parkinson’s, yet you are convinced that you have it. PD does not manifest over 5 days or 5 months. It’s a disease that creeps up on you over a long period of time, years. You have way too much time on your hands and your much too young to be fussing over this stuff. i’m sorry that you lost your job. Pick yourself back up and find a new job and I guarantee this will all become an after thought. Dave
  14. DaveN

    33m. Worried of YOPD

    Zero, i watched your videos and to be honest, I don’t see anything in them that you should be concerned about. I’m not a doctor, just a guy with Parkinson’s. I hope that when you see the neurologist you listen to him and accept what he has to say. Some people come on here in hopes that the members of this site will confirm that they have PD. Please do not substitute the advice of unknowns, my self included, for an expert. Good luck with your appointment and let us know how it turns out if you so desire. Dave
  15. DaveN

    New to PD - Parkinsonism - SWEDDs or Whatever

    Scott, You should also ask your doctor the next time you see him if it could be DRD (Dopamine Responsive Distionia). It can sometimes show like Parkinson’s. If it is DRD, you should be able take a small dose of Sinemet to treat your symptoms and not have to worry about it getting worse. Dave
  16. DaveN

    Peeved PreClinical Parkinson's Person

    Kara, Please don’t take what I say the wrong way. Parkinson’s is difficult to diagnose when symptoms are sporadic. Symptoms can also be magnified when you focus on obtaining a diagnosis. When I was first diagnosed, my symptoms were much more prevelant in the beginning because I was worried about having Parkinson’s. Now that several years have passed I have found that everything has settled down. ShopGuy has some great advice that should be headed. Dave
  17. DaveN

    PD and immune system response

    Drummergirl, I feel for you. My Oncologist was stumped when all of my advanced labs came back. That was five years ago. According to him, I should be wearing a mask at all times and avoid contact with anyone that is ill. I have limited contact with people most of the time. I still get sick but no more than the average bear. I did have a scare a couple of years ago when I forgot to take the preventative antibiotic prior to having my teeth cleaned. I ended up with a nasty infection around my spinal cord stimulator battery that took about a month to eradicate. My secret to healthy living is that I eat 3 to 4 oranges every day. Stump, I don't recollect how much the labs cost. I'll make an effort to check my records to see if I can find out. I've been hitting my deductible in January because of the high cost of Rytary and Azilect (generic is still expensive). Dave Note: I started taking Sinemet about 3+ years ago and switched to Rytary after it was approved by the FDA.
  18. DaveN

    PD and immune system response

    I have agammaglobulinanemia (extremely low IgC and IgG levels) that was discovered when I first went to a doctor about some of my PD symptoms, This condition actually clouded my Parkinson’s diagnosis in the beginning. My then neurologist referred me to an oncologist because they thought I had cancer. After a plethora of tests to include a bone marrow extraction, I was given a thumbs up by my oncologist who is still baffled to this day because I don’t get sick even though I have no immune system. I get tested every 6 months and still my numbers do not change. My doctor said to not change anything I’m doing because it seems to be working for me. Drummergirl, it’s possible that PD is causing our low numbers. It would be interesting if some other people got their levels checked, on and off Carbidopa. Dave
  19. Marissa, You need to slow down a little and take a breath. There are other medical conditions why someone's arm doesn't swing besides Parkinson's such as shoulder pathology, Erb’s palsy, or stroke. Another condition could be Gunslinger's Gait. A gunslinger keeps their hand close to the gun effectively changing their gait. This can also occur in women who carry a purse and keep their arm close. Essential Tremor is associated with an action tremor. One of your medications could also be causing some of your symptoms. You need to make an appointment with a Neurologist who is a Movement Disorder Specialist to help sort this out. You may want to start with your current Neurologist to see what he thinks, then go from there. Dave
  20. DaveN

    Back fusion and dealing with my pd.

    Use the walker. Last thing yo want to do is muck up your fusion. A life of pain ☹️ sucks. Dave
  21. Linda, I’m a Type II Diabetic and have Parkinson’s. I’ve not researched it much. I started C/L about 4 years ago and noticed no change in my glucose levels with my A1C hangin out around 6.8. Last year, I switched to Rytary and have since noticed that my A1C is now at its lowest in years at 6.2. PD could be effecting your glucose levels. If you provide some more detail, we might be able to respond in kind. Dave
  22. This is highly subjective. UPDRS total score: 32 (out of 199 possible points) Mentation, Behaviour & Mood: 3 (out of 16 possible points) ADL: 9 (out of 52 possible points) Motor examination: 14 (out of 108 possible points) Complications: 6 (out of 23 possible points) Dave
  23. DaveN

    Shot in the dark

    Chris, Parkinson's normally develops on one side of the body, usually in a hand and slowly will encompass that side over several years. Eventually, it will progress to the other side. I was diagnosed with PD 4 years ago with my first symptoms appearing about 6 years ago. To this day, my PD is on my right side only. Parkinson's develops slowly over an extended period of time. You should make an appointment with an MDS but I would be surprised if you were diagnosed with PD. My suggestion would be to start an exercise program and secure a job. This will aid in alleviating some of the stress you may be feeling and who knows it may improve your symptoms. Dave
  24. DaveN

    Shot in the dark

    Chris, Out of curiosity, are your tremors on both your left and right side? Dave
  25. Andy, I’m a couple years older than you but was dealing with the same issues. I participated in a study a couple of years ago to determine if Azilect could aid in cognitive decline. I’ve been on it a couple of years now and it does help. I’ve also found that the more physically active I am, the more mentally sharp I am. I thought I was in the twighlight of my career only to find that I have more to give. I’ve written some of the most complex systems in my career over the last couple of years. My employer does not know I have PD. Dave