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Superdecooper

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Everything posted by Superdecooper

  1. Superdecooper

    Just Interesting Things about This and That

    Thought for today: Whether you give a man a fish or teach him how to fish, your job hasn’t changed. Your job is fish. It is not to make value judgments about whether the person is deserving of fish. It is not to criticize the person for not knowing how to fish already. And it is certainly not your job to stand around and debate the relative efficacy of fish charity vs. fish education while the person in front of you goes hungry. This person is your fellow human. Your job is fish. —author unknown.
  2. Hey Musicman,

    What Lee Child's book are you reading now. I just finished Night School. 

    -S 

  3. Superdecooper

    Welcome to the club

    Hi Gang, I thought I'd post a short note on this forum. Following a positive Datscan two weeks ago, my MDS diagnosed a dopamine deficiency, with very early onset of PD symptoms. The MDS said my mild motor issues, including some with a psychogenic overlay, don't rise to the level of full blown Parkinson's disease. However, the non motor symptoms definitely raise the prospect of PD, so he's starting me on Azilect later this month in hopes of keeping me from developing into Parkinsons in the coming years. I'll get another Datscan next year, but he expects that will also come back positive for PD. I'm not sure how you can have a lack of dopamine causing a resting tremor, apathy, right side stiffness, insomnia, night sweats, vivid dreams and kicking, diminished sense of smell, painful dystonia and small handwriting, low testosterone, reduced arm swing and dropping things and not have PD. But, I'll go with the diagnosis for now as long as the Azilect begins to address all that in the next three months. Looks like we caught this early and might have a chance to head things off. So welcome, or something. If anyone has a similar story, I'd sure like to hear it. -S
  4. Superdecooper

    Welcome to the club

    Is that a lot? My doc has me on Rytary 95, one capsule 3x a day. I’m a pretty muscular 6’2, 230lbs so I guess that’s why he didn’t start me on a lower dose. You are taking more than three times as much sinemet as I am. But then, you’re not taking Azilect, which I gather you had a bad reaction to.
  5. Superdecooper

    Welcome to the club

    I’m really not sure what to make of these PD meds. I honestly feel like I’m in my early 40s when I take this Rytary. It’s like stiffness and clunky movements evaporate and I feel like I can glide from place to place without a care. It’s the opposite of how I felt last week. It really reminds me of the athletic grace that I had in abundance when I took karate. That grace sort of slipped away in my early 40s. I do remember waking up saying something has changed around 2004. About 5 years later I started having the very first vivid dreams and kicking in my sleep, and sleep apnea problems, and low T.
  6. Superdecooper

    Welcome to the club

    Ack. Wait a sec. you mean to tell me that as soon as the medicine starts wearing off, the symptoms start coming back. Seriously?! ummmmm, this is definitely sucking.
  7. Superdecooper

    Welcome to the club

    Hi adams234, thanks you for the kind invitation...I decline! first question: can I give my membership invitation back, no? DRats, what is this the Mafia? Hotel California? 😀 i am dealing with this, but I am going to have questions on how to stay strong and be positive, like LAD says I should do. For now, thanks everyone for the encouragement. -S
  8. Superdecooper

    Welcome to the club

    Yep still in denial, but getting there slowly.. but really, who's rushing. Especially when I get more results to consider. The Johns Hopkins review (done by two separate radiologists) of my Datscan was posted yesterday... I-123 DaTscan SPECT consistent with moderate dopamine transporter deficit in the bilateral putamina and mild dopamine transporter deficit in the left caudate. These findings are consistent with Parkinsonian syndrome.
  9. Superdecooper

    Welcome to the club

    My interesting life continues...
  10. Superdecooper

    Meds question

    Mark, is it okay to take Rytary and Azilect at the same time on an empty stomach when I first wake up? or shoulda I take the Rytary with my breakfast a little later in the morning.
  11. Superdecooper

    Welcome to the club

    Ahh, so denial is still kicking around, but it’s being replaced by a little guilt and frustration. The Rytary has all but stopped the tremors and even alot of the pain and cramping and stiffness. So that means I have Parkinsons. And the diagnoses from the Johns Hopkins MDS is correct. But I don’t want to believe it. Then I look at the bottle of medicines and I have to acknowledge that I’m actually taking carbidopa/levodopa. And i have to admit that it’s working.and the tremor that started in earnest last September is finally under control for the first time in years. I had guessed this was probably PD last Fall, but i had been ignoring the changes to my health over the last three years. I allowed the docs to adopt a wait and see approach, even though some symptoms were getting worse over the last six months. Sort of frustrated with myself about that - Why didn’t I just act sooner and find a better MDS last fall, rather than accepting an appointment with a fellow. Maybe I could have saved myself months of frustration. I guess you can always look back with certainty about the things you did in the past. Folks tell me I’ve been proactive in caring for myself. I feel like I didn’t trust myself enough - so that’s just a bit of guilt. im working through the emotions here... -S
  12. Superdecooper

    Welcome to the club

    OH my, what kind of magic pill is this? Started taking Rytary this morning. The tremor in my right hand is mostly slowed down, almost to the point of gone!
  13. Superdecooper

    Diagnosed with PD on 46th birthday

    Ludy, Let me share some words of wisdom from fellow forum member Hercules957: At first, it is overwhelming to say the least. You need to go through the grieving process leading to acceptance. Once in the acceptance place, you will encounter new symptoms that will force you to go through the process again. We can only find peace in the acceptance mode. Living in denial, anger, depression or compromise is more difficult. I deal with PD by 1. keeping a positive attitude, 2. looking for the right medication cocktail, 3. exercising, 4. resting, 5. eliminating stress, 6. staying warm. Having PD is like a new life you have not chosen. Forget the old one, or at least detach from it otherwise nostalgia will lead to frustration. Try not to look too far in the future as this will lead to anxiety, causing stress which will exacerbate symptoms. Be grateful for the positive aspects present in your new life. It is a marathon, save energy, don't rush. Be systematic and analytical. You will become the PD expert for yourself. Don't compare too much to others as we are all affected differently and progression is different for all. The future has too many unknowns, stay in the present as much as possible.
  14. Superdecooper

    Welcome to the club

    It’s official. Doc called and said his clinical diagnosis is PD starting on Rytary in a few days. welcome to the club. or something.
  15. Superdecooper

    Welcome to the club

    Sorta tired of waiting for a final answer. I'll let you know whenever I learn something definitive.
  16. Superdecooper

    Welcome to the club

    So another interesting visit to report. The Johns Hopkins MDS says he’s not ready to diagnose me with Parkinson’s based on his exam. He’s also not ready to rule Parkinson’s out either. He definitely wants me to stay on Azilect, which he suspects may be masking some symptoms. That was his response when I asked if he didn’t think I had PD, then why should I take the meds. Basically, it might be working. He said Percocet could “theoretically” have impacted my PD positive Datscan results, but he could find no NIH studies to back that up theory. (My previous neurologist suggested that the test was a false positive due to my using pain meds during the test.) He understood the previous doctor’s reasoning, but concluded it was pretty unlikely that Percocet had any impact. Also, he’s had no patients with that experience. He said the tremor could be caused by a number of things, but he wants to get Hopkins radiologist to examine the Datscan and write a more specific detailed report with quantative data he can consider. He said the tremor could be essential tremor, or a postural tremor that is the beginning of Parkinson’s He also suggested I get a REM sleep disorder study done and also said I should get a night guard for my teeth to stop my teeth from tremoring. Hes going to get back to me in about a week after he gets the Datscan report back. Im patiently waiting for a resolution to this. - S
  17. Superdecooper

    Azilect drug interaction?

    Hi Mark, I’m taking CIPRODEX® (CIPROFLOXACIN AND DEXAMETHASONE) ANTIBIOTIC EAR drops for a swimmers ear infection. I’m also taking 1 mg of Azilect each morning. Should I be worried about a drug interaction? -S
  18. Superdecooper

    Azilect drug interaction?

    So no problem with this warning in the Azilect drug information... 5.4 Ciprofloxacin or Other CYP1A2 Inhibitors Rasagiline plasma concentrations may increase up to 2 fold in patients using concomitant ciprofloxacin and other CYP1A2 inhibitors. Patients taking concomitant ciprofloxacin or other CYP1A2 inhibitors should not exceed a dose of AZILECT 0.5 mg once daily [see Dosage and Administration (2.2), Drug Interactions (7.6), and Clinical Pharmacology (12.3)].
  19. Superdecooper

    Unified Parkinson's Disease Rating Scale (UPDRS)?

    Would you kind folks care to resurrect this thread and retest yourselves. I’d like to see how you are scoring yourselves. Yes it’s not as accurate as what an MDS would do but it does show your own perceptions of progress.
  20. Clues to Parkinson’s and Alzheimer’s From How You Use Your Computer By Sumathi Reddy, The Wall Street Journal Updated May 29, 2018 10:54 a.m. ET How you type or move a mouse could help detect whether you have a serious disease like Parkinson’s. A Duke University doctor working with Microsoft researchers sifted through data on the physical movements of computer users that came from millions of internet searches. Their study found links between some behaviors—such as tremors when using a mouse, repeat queries and average scrolling velocity—and Parkinson’s disease. They used artificial intelligence, or a computer analysis, to identify which of the metrics separated a control group from those searching for Parkinson’s disease symptoms. The research is part of a trend sweeping health care: the use of artificial intelligence (AI) to help better diagnose and treat patients. The goal is to capture information by monitoring their everyday movements and behaviors. This could yield insights never possible in a pre-digital age. It also, in the case of commercial companies, raises questions about how best to protect the privacy of research subjects. AI gives researchers a chance to get much more real-time information on how people function, says Jeffrey Kaye, director of the Oregon Center for Aging and Technology, part of Oregon Health & Science University. “Right now clinicians basically use the old-fashioned way of gathering information,” he says. “It’s like medical anthropology. You’re trying to detect things that are happening based on really very little historical data.” Major hospitals are finding hypnotherapy can help sufferers of digestive conditions like heartburn, acid reflux and irritable bowel syndrome. When older patients feel more connected, they often stay healthier. Now health-care providers are taking steps to help them feel less alone. People with celiac disease can still consume enough of the protein to trigger health problems. Doctors say what they call digital biomarkers could be especially useful for brain disorders like Parkinson’s and Alzheimer’s. “Both of these conditions in their very early stages can be very hard to differentiate from a host of benign conditions, so the misdiagnosis rate is high,” says Murali Doraiswamy, director of the neurocognitive disorders program at Duke University, who was part of the Microsoft research. Using a computer keyboard and mouse to monitor one’s function means researchers need no special equipment. Plus, they can capture data over long stretches, Dr. Doraiswamy says. “You can see how someone is changing over time, which might give you greater sensitivity and accuracy in making a diagnosis.” The study he worked on with Microsoft analyzed more than 31 million user searches on Microsoft’s search engine, Bing, over 18 months. About 700 of the user searches were searching for Parkinson’s disease symptoms, while the remainder were considered the control group. The data were anonymized and can’t be linked back to users, Dr. Doraiswamy says. NPJ Digital Medicine published the results of this research in April. This kind of data-driven research has grown more common. Adriana Seelye, a neuropsychologist at the Minneapolis VA Health Care System and Dr. Kaye’s former student, has focused on using sensors in cars and on computers to help detect early Alzheimer’s disease. “What we’re working on is using the information that these sensors give us to figure out what the most important patterns are that emerge when someone is going from normal, healthy aging to early Alzheimer’s disease,” Dr. Seelye says. In a study published in 2017 in the journal Alzheimer’s & Dementia, she and co-researchers followed 110 healthy elderly adults for up to three years and six months. They tracked the participants as they did a weekly online health survey. They found 29 people ended up with mild cognitive impairment (MCI), which puts them at risk for developing Alzheimer’s disease. Those with MCI took longer to complete the survey. Dr. Seelye and co-researchers also studied the mouse usage of 42 elderly adults, 20 of whom had MCI, over one week. That study, published in 2015, found those with MCI made fewer mouse movements and had longer pauses between movements. She has also studied how people drive using information from the sensors installed in data ports in cars. The data port relays information on the number of trips taken, duration of trips, left turns versus right turns and time spent on the highway versus local roads, among other information. In a pilot study published in 2017 in the Journal of Alzheimer’s Disease, Dr. Seelye and co-researchers analyzed the driving information of 28 people over an average of about 200 days. They found that those with MCI drove fewer miles and showed less variability in their driving patterns. Now she’s working on a federally funded study trying to replicate the findings with more than 100 patients followed over four years. The researchers will use sensors to monitor the driving, computer use and medication use of all the participants and then use computational modeling to make predictions off that data. “What is the best combination of variables that will be sensitive to detecting early Alzheimer’s disease?” she asks. Dr. Doraiswamy of Duke says the next step is to test the digital metric they came up with in the Bing study to see if it would line up with the computer logs of patients already diagnosed with Alzheimer’s or Parkinson’s disease, with their consent. Microsoft declined to comment on the study. A spokeswoman for Microsoft says Bing users’ search and mouse activity is analyzed in a way that is not directly tied to individual users, which is common industry practice. Arvind Narayanan, an assistant professor of computer science at Princeton University who researches and teaches about information privacy and security, says companies routinely collect computer user information such as mouse movements. “Do users know this is going on? I would say this collection of this information is disclosed in a privacy policy,” Dr. Narayanan says. “But it is generally not the case that users read the privacy policy and understand it before using a site.” Privacy policies are usually vaguely worded, so it can be hard to decipher what the information will be used for, he says. Using the information for medical research without clear notice seems “inappropriate,” he says. “On the other hand, what is an ideal consent model for this kind of surprising use of big data in a medical research context?” Dr. Narayanan says. “I think there are genuinely open questions and people are still working out the answers to these things.” Dr. Kaye, whose research has used sensors on keyboards and other technology in his studies, says while patient privacy can be a concern, studies have found that patients don’t mind such data going to their doctors, but they may trust commercial entities less. Dr. Doraiswamy says the Microsoft researchers were able to analyze the data after they were made anonymous with no intent to ever link back to the users. “So this type of data is generally considered acceptable to analyze because it’s de-identified, so there’s no privacy issues,” says Dr. Doraiswamy. He notes companies and academic researchers are increasingly analyzing user data to flag for mental health and medical conditions. Google unsuccessfully tried to use its data to predict flu outbreaks. Facebook has analyzed data to determine suicide risk, and researchers in Vermont published a study using Instagram photos to identify markers for depression. Write to Sumathi Reddy at sumathi.reddy@wsj.com Appeared in the May 30, 2018, print edition as 'A Click Could Give Clues To Parkinson’s or Alzheimer’s.'
  21. Superdecooper

    Lyme induced parkinsonism

    Interesting stuff. This calls for better study to determine if sexual partners of Lyme disease patients have been infected, and also whether that infection then leads to a diagnosis of PD.
  22. Superdecooper

    Lyme induced parkinsonism

    Kevin, you have a big smart brain and also alot of time to ponder linkages and patterns. What you don't need is unnecessary guilt...which might be a byproduct of having PD and subconsciously worrying about future productivity. you have no way of testing that hypothesis that you gave your wife Lyme disease - which naturally leads to the question of did you also give her PD? Doesn't medical science requires hypotheses to be tested or discarded? You're right, its an interesting conspiracy theory. Don't beat yourself up. That's what PD is for. -S
  23. Superdecooper

    See an MDS or continue to monitor as per my neurologist?

    Hi John, if you take it now and it makes you feel better during the trial run, you could still stop taking it if you don’t feel like you want Or need meds now. But Youd have an answer i suppose and that would be helpful. Also it still might take a while for an official diagnosis..try to take it one step at a time.
  24. Superdecooper

    See an MDS or continue to monitor as per my neurologist?

    Hi John, Obviously you want some answers. Do you want them now or later. -S
  25. Superdecooper

    Missing Meals?

    Hey gang, what happens when you miss meals, does it make your Tremor worse, or anxiety, etc.? and what happens if you eat junk/fast food? I know the old saying “garbage in, garbage out” but this seems a little overboard. I had to take an emergency overnight road trip to see family and there wasn’t enough rest, or home cooked food and too much stress. Life is way less good yesterday and today. My symptoms seem to have gone into overdrive. Whats that all about? -S
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