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Everything posted by DaveN

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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.
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. DaveN

    Shot in the dark

    Chris, Out of curiosity, are your tremors on both your left and right side? Dave
  14. 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
  15. DaveN

    Pain in hip

    Lori, You should make an appointment with an Orthopedic Doctor to make sure that it’s not something else. Not all problems are PD. Dave
  16. DaveN

    The period at the end of the sentence.

    Genden, Please accept my condolences. Out of curiosity, how old was your husband? Dave
  17. DaveN

    Young onset PD testing

    David, While I whole heartedly agree that members should preface our remarks as our own and not as medical fact. We should refrain from saying whether someone does or does not have PD. Warrun01 holds very strong beliefs and means well. A lot of folks come on here looking for answers and we all try to be supportive as best as we can. Dave
  18. DaveN


    I get the hiccups much more often than I used to. My wife learned of way to instantly make them go away from a science teacher. Eat a spoonful of sugar and you will find them gone immediately. This works every time for me. My neighbour had the hiccups for two weeks, his doctor prescribed all sorts of stuff to make them go away - one spoonful of sugar made his troubles go away. Mary Poppins gets it right every time :). Dave
  19. DaveN

    Does this look like a PD Tremor?

    Matt, Several things. First, your tremor seems a little fast. I'm not a doctor and I can only compare to what I have and what I've seen in my doctor's office. Second, when my tremor occurs, I don't have to move my thumb to set it off. My tremor will occur when I'm resting. Movement can suspend the tremor for a few seconds dependent upon the intensity. Moving my thumb like in your video might be enough to stop my minor tremors. I don't see your curiosity as arguing, I understand. I am not tremor dominant. My tremor is more of a nuisance than anything. I will say it is more prevalent now than when I was diagnosed four years ago. My meds do a very nice job of masking my symptoms. Hope this helps some. Dave
  20. DaveN

    I think I have parkinsons

    Branden, This does not sound like Parkinson’s. PD develops over a long time and usually starts on one side. I’ve never heard of it going into remission then coming back. I hope your doctors figure out what’s wrong with you. Don’t try to self diagnose yourself, you’re only going to see PD in every symptom you have. Dave
  21. DaveN

    Does this look like a PD Tremor?

    Matt, It doesn’t look like a Parkinson’s tremor to me. Not to make light of your problem but have you ever heard this old joke: Patient: Doc, my arm hurts when I bend it this way. Doc: Don’t bend your arm that way. Have a nice day and Happy Easter to you. Dave
  22. DaveN

    Akathesia, is this present in your off?

    Sherrie, I’ll have to try the tapping next time also. Most of the time I’m not even aware of the swaying until my wife tells me about it. Dave
  23. DaveN

    Sleep Number Bed

    Do any of you have a sleep number bed with the adjustable base? My wife and have had a sleep number for the last 15 years and like it but are considering upgrading to the adjustable base. Looking for reviews and experience with this type of bed as it relates to Parkinson’s. Thanks. Dave
  24. DaveN

    Sleep Number Bed

    My wife and I decided not to purchase the adjutable frame. It’s too expensive $3,000+. That part of the purchase has a no return policy. Way too much money to spend on something you don’t even know if you’ll like. As for the sleep number mattress, we will be buying a new one. We’ve had ours for 15+ years and with the exception with the edge of the bed on my side, it’s like the day we bought it. The newer bed has a better design where I will be less likely to wear out the edge. I sleep walk/sit on the side of the bed, hence I’ve worn out my side of the bed. We’re giving our current sleep number to our oldest daughter. Dave
  25. DaveN


    SmallOwnGuy, I’ve been taking Rytary for several years now. My dosing times are 6:00, 10:30, 3:00, 9:00. As you can see my times are scheduled in a way to not interfere with my meals. The only times I notice when the Rytary is ineffective is when I’m constipated. Let me know if you need anything else. Dave