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Everything posted by Superdecooper

  1. Antidepressants and Rasagiline and Pramipexola

    Hey Bobbi Another forum member (Adam, i think) posted this elsewhere Before you need to refill your Azilect prescription next year try applying here. https://tafcares.org/ They covered all my $1100 out of pocket each time I refill. All I had to pay was a $10 copay. The coverage is good for one year then you can renew.
  2. Antidepressants and Rasagiline and Pramipexola

    Hi bobbieH, My handwriting hasn't really improved yet, but I've only been on Azilect for a few weeks. I've got pretty painful dystonia in my dominant right hand and a tremor. I've had limited success with taking Baclofen, a muscle relaxer. But if it hasn't cleared up in about March, I'm going to demand that my MDS give me something stronger. -S
  3. Apathy - any suggestions

    Hello Everyone, what do you all do for apathy? I'm finding it pretty difficult to start things and almost impossible to finish things. Seems like I can't consistently connect with whatever feeling that makes me want to get things done. It's starting to affect my work some since I am focusing on short term projects. whats the solution for this? For example, I have an expense report that I must get finished and I can't seem to begin it. Even though it's probably about $1500 and I need the money. My brain is like, oh well, just do it tomorrow. I've made a list of the steps needed to do it, then I put the list away and do something else. I have other projects in a similar state of disarray. Could be I'm too preoccupied by dealing with PD, but really, I'm a type A person so this is pretty frustrating. If it's one thing I know how to do well it's keep many things moving at once. any suggestions? I've got to move past this. -S
  4. Welcome to the club

    Cross your fingers, I seem to be turning a corner here. Since last week, ive slept between 7 and 8 hours and the night sweats seemed greatly diminished. -S
  5. 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
  6. Apathy - any suggestions

    Well, this is an eye opening conversation for me. All of you are way more experienced with Parkinson's than me and all of you are taking more meds than me..but you all have problems with apathy. So, I guess meds are not the answer, right? this sucks. -S
  7. Sexual dysfunction

    Noah, I'm so sorry to hear that. Have you had a prostate exam or had your testosterone levels checked by a urologist? Usually, doctors rule out physical reasons, then they start on the psychological ones.. like anxiety, etc. If you send me a personal message, I'll be happy to go into more details. -S
  8. Welcome to the club

    8 hours of Sleep would be so nice. So, I slept for a full eight hours the other night. First time in about a year. Could it be the Azilect? Just not sure what combination of things I did to make that happen. And, It hasn't happened again so I don't know what actions to duplicate. I did sleep in a pajama top. And I slept on top of a cotton towel. So those two things absorbed the usual sweating that I go through every night. I didn't wake up in a cold sweat. I did have a vivid dream, but I don't remember it - I just remember waking up with the feeling I had just escaped some tragedy...usually I can recall most of these dreams every night when I wake up at 3 am or 430 or 5. (For example, the next night I dreamed I was walking around a plane crash looking for survivors.) I also swam intensely for just over 30 minutes earlier in the evening. Usually I swim around 20-25 minutes with a more leisurely pace. I also took the Baclofen, Melatonin and Gabapentin about two hours before bed, instead of right at bedtime. -S
  9. Pfizerstopping R&D for PD

    Ah yes, politics with Parkinson's- just what the doctor ordered, or not. Heres this link, reposted here, about Pfizer from an LA Times columnist: http://www.latimes.com/business/hiltzik/la-fi-hiltzik-pfizer-20180108-story.html stump, your short history of economic boom times seems to be missing a few presidents, plus you really can't blame Obama for the recession that started before he was president. Maybe blame is the wrong word. And finally, the new tax law does cut tax rates for everyone, but makes the corporate rate cuts permanent and sets up a future congress to extend the individual ones that expire in the mid 2020s. It's based on the GOP premise that deficit financed tax cuts spur economic growth, which THEN generates tax revenues that offset their cost. But while those revenues are still coming in over the next 10 years, the US will have to borrow from China and other nations to keep the US budget on track. if higher tax revenues do not materialize, either because of another depression or war, then the country will be faced with higher deficits and the need to either raise tax rates or cut spending on domestic programs. That's usually when the country elects a Democrat to the office of president to make the decision to raise taxes...but neighter political party really ever cuts spending. That's the political context behind Pfizer's decision to stop PD research. They're taking the tax cut and investing it elsewhere. Nothing in the new tax law says their shareholders shouldn't get paid first. -S
  10. Sexual dysfunction

    Good catch. Good writers need good editors.
  11. Call your senator about the awful tax bill

    Now this.... Column Pfizer, pocketing a big tax cut from Trump, will end investment in Alzheimer's and Parkinson's research by Michael Hiltzik, LA Times Columnist http://www.latimes.com/business/hiltzik/la-fi-hiltzik-pfizer-20180108-story.html ith every passing day, it becomes clearer who’s reaping the benefit of the huge tax cut handed over to American corporations by the Republican-dominated Congress in December. Spoiler alert: Not workers or customers, but shareholders, especially the rich ones. (Don’t be fooled by those $1,000 bonuses handed out by a few big companies anxious to curry favor with the Trump White House — if they were serious about improving their employees’ lot they’d distribute the money in the form of permanent raises, not a bonus that you can safely bet will be a distant memory by this time next year.) The big drug company Pfizer seems intent on being a pace-setter in cranking out the benefits of the tax cut to stakeholders who need them the least. In an announcement over the weekend, Pfizer said it was shutting down its research efforts on treatments for Alzheimer’s and Parkinsonism. The company didn’t say how much it was spending on the two conditions, but said about 300 researchers will lose their jobs as it redirects its research and development budget elsewhere. It’s really alarming to see such a large pharmaceutical company deciding to abandon research into the brain and central nervous system.— James Beck, chief scientific officer, Parkinson's Foundation “Pfizer routinely reviews its R&D pipeline,” the company said in its formal statement of the change. It said it was continuing its R&D programs for the drugs tanezumab and Lyrica. That’s a bit of non sequitur, since the first is a treatment for chronic pain from osteoporosis and other conditions and the latter is a drug for nerve pain caused by diabetes, shingles and spinal cord injury and is an anti-seizure medication for epilepsy patients. They do both fall within the neurology field, however, which also encompasses Alzheimer’s and Parkinson’s. Pfizer’s announcement dismayed advocates for victims of central nervous system diseases, which have presented researchers with some of the most intractable challenges in the healthcare field. “It’s really alarming to see such a large pharmaceutical company deciding to abandon research into the brain and central nervous system,” James Beck, chief scientific officer at the Parkinson’s Foundation, told me Monday. “It’s telling for how difficult it is to do research into neurodegenerative diseases.” Of even greater concern, he said, is that “having Pfizer exit does not augur well for what other companies are likely to do.” Pfizer’s move also raises questions about what role Big Pharma should play in drug R&D, especially for conditions without known treatments or those with relatively few sufferers. Research into these two diseases is about as risky as one could imagine, since no treatment thus far has been shown to have any promise in curing either disease or averting its onset; some drugs may delay symptoms for up to a year or temporarily alleviate symptoms, but patient advocates consider those to be modest advances at best. On the other hand, an Alzheimer’s cure would be the very definition of a blockbuster drug, since 5.5 million Americans are known to suffer from the disease and the patient base is expected to expand markedly as the population ages. Parkinson’s afflicts about 1 million Americans, the Parkinson’s Foundation says. Normally, that would place this research right in Pfizer’s wheelhouse. The company is explicit about basing its R&D strategy on drugs with “multi-billion dollar blockbuster potential,” as its R&D chief, Mikael Dolsten, told a J.P. Morgan healthcare conference on Monday. No one would say that drug companies should engage in research as a philanthropic exercise, but within the context of the U.S. pharmaceutical industry, Pfizer looks risk-averse. The second-biggest U.S. drug company by sales (after Johnson & Johnson), Pfizer in recent years seems to have devoted more effort to financial engineering than biomedical engineering. In 2015, for instance, it announced a $160-billion merger with Allergan, the maker of Botox. The deal was a so-called inversion, aimed transparently at cutting Pfizer’s tax bill in part by eliminating U.S. tax on $147 billion in profits it had stashed overseas. Although the company denied that the deal was “simply… a tax transaction,” the truth emerged in 2016 when the deal was canceled; the only thing that had changed was that the U.S. Treasury had implemented new rules that all but eliminated the tax savings. So, bye-bye, Allergan. Pfizer is expected to be among the prime beneficiaries of the corporate tax cut. The measure allows companies to pay a tax rate as low as 8% on foreign earnings they bring home, a big discount from the 21% top rate the law assesses on domestic earnings, itself a big cut from the previous rate of 35%. By some estimates, that could be worth more than $5 billion to Pfizer alone, not counting any gains from the lower tax rate. As it happens, Pfizer signaled how it would apply the tax savings even before the final passage of the tax bill: The company announced a $10-billion share buyback on Dec. 18, four days before President Trump signed the tax cut into law. That buyback was on top of $6.4 billion left to be spent from a previous buyback plan, and was accompanied by a 6% increase in the company’s stock dividend, which will be worth roughly another half-billion dollars a year. For comparison’s sake, Pfizer’s entire research and development budget averaged about $8 billion a year from 2014 through 2016. Pfizer’s diversion of its tax break to shareholders parallels its behavior the last time American companies received a tax holiday on repatriated foreign earnings. That was in 2004, after corporations promised to apply their tax savings to hiring more workers and investing in their business. Instead, they laid off workers, bought back their shares, and pumped up their CEO compensation. Pfizer brought home more than any other company in that amnesty, $35.5 billion, according to a 2007 investigation by Sen. Carl Levin, D-Mich. From 2004 through 2007, Levin reported, Pfizer bought back more than $27 billion in stock and reduced employment by 11,748 workers. This time around, the company is again gifting its shareholders and laying off workers. Abandoning a challenging research field is a new wrinkle, however. What’s most discouraging to patient advocates is the dearth of alternatives to big pharmaceutical companies in brain research. Pfizer’s withdrawal, especially if it prompts other big pharma companies to flee the field, places more of the burden on small biotech firms, academia, foundations and government. The news “reinforces the urgent need for additional federal investment in Alzheimer’s research,” a spokesman for the Alzheimer’s Foundation of America told me. But the Trump administration has placed funding for government research projects in almost all scientific fields on the chopping block. Some experts recognize that the big drug companies may have been less than sturdy partners all along. “Many groups have been hoping for quick wins in the [central nervous system] space and we haven’t succeeded,” Beck of the Parkinson’s Foundation says, “so there’s some frustration from the viewpoint of management that we’re not getting the progress we need.” He says his organization and others will still focus on the most promising pathway to a cure: Trying to understand the mechanisms of these diseases, which are still very murky. Only once those riddles are solved can drug research truly move ahead. But as long as purely economic considerations drive drug R&D, the prospects for progress are dim. The Republicans who drafted the corporate tax cut promised that it would lead to more business investment and therefore economic growth. But as Pfizer demonstrates, all the incentives run in the opposite direction: More investment in shareholder welfare, less economic growth, and less attention to what corporations are supposed to exist for — improving people’s lives.
  12. Dropping Things

    Does the 3 second rule apply? if you drop food you are eating on the floor, can you pick it up and eat it without getting extra germs? If you do it within 3 seconds? asking for a friend...who just happened to drop a delicious apple!
  13. Hi Mark, I posted this in Ask the Doctor too, but I wanted to get the opinion of a pharmacist.. i read somewhere that many men with PD have low testosterone. After a brain MRI, My endocrinologist told me several years ago - long before I took note of my current tremors and other related PD symptoms - that my pituitary gland had stopped signaling for production of testosterone. Now I'm wondering about the link between low T and PD. I found this in a recent posting at https://neuroendoimmune.wordpress.com/2013/11/13/dopamine-and-testosterone-two-important-pieces-of-the-neuroendocrine-puzzle/p "An up-regulation of dopamine stimulates the release of prolactin inhibitory factor (PIF). PIF inhibits the pituitary from releasing prolactin. Because prolactin inhibits gonadotropin-releasing hormone (GnRH) secretion, the inhibition of prolactin caused by dopamine, increases the secretion of GnRH, therefore increasing the secretion of testosterone." In light of the above information, I'm wondering if taking Azilect, which my MDS has prescribed, might lead to an increase in my production of testosterone? If so, I might try to decrease my daily replacement testosterone supplement. -S
  14. Welcome to the club

    Nope. I have white house credentials, but i haven't been there in a while. i'll send you a link so you can see me.
  15. Welcome to the club

    hey gang, Just found out how to do this: Here's my Datscan from early December https://drive.google.com/file/d/1BBGh97ajaCiWiXDvWofFB8MiYAaiq-5m/view?usp=sharing Impression Variable degree of decreased tracer activity in the left sided caudate and bilateral putamen as described above in detail is consistent with a deficit in dopaminergic transmission, which indicates a parkinsonian syndrome, but cannot accurately differentiate Parkinson's Disease from multiple system atrophy or progressive supranuclear palsy. Clinical correlation is advised. MDS says its a dopamine deficiency and he's treating me with Azilect.
  16. Question about Link between dopamine and testosterone

    Hi Mark, I'm trying to take a best estimate of when my PD symptoms might have started. I began having low T issues in my early 40s, but that went undiagnosed until my late 40s. I was just wondering whether a dopamine deficiency in my early 40s could have kicked off testosterone problems, since the endocrinologist did a brain MRI but could find no physical and no underlying disease for the lack of testosterone production. -S
  17. sleep benefit a good way to measure PD

    Oh sorry, johnny. i have sleep apnea. I know the joy of using a Cpap machine. I still wake up in a cold sweat. -S
  18. sleep benefit a good way to measure PD

    Hey Johnny, Let me know how that works for you. I'm still getting between 4 to 5 1/2 hours of sleep per night, lots of crazy dreams, some kicking in my sleep, and waking up drenched in sweat. I've been taking Melatonin for the last year or so - very little effect - and now I'm on Azilect, plus daily exercise. If i could get 8 hours of sleep, I think I would feel like a king. Happy new years to you. -S
  19. Welcome to the club

    So I did. Took the Azilect this morning. Here goes. -S
  20. Dropping Things

    Hey gang, i needed to drop that bottle of water on the kitchen floor just now! because the floor needed to be mopped. Perfect! -S
  21. Welcome to the club

    Hey gang, yesterday was pretty tough. Lots of pain from a chiropractic manipulation of my lumbar spine and SI joint, plus I'm weaning off of narcotic pain meds as I'm preparing to switch to azilect this weekend. Plus the pain meds were at least minimally dulling pain in my rotator cuff. The bacolfen I'm taking for the dystonia in my hand and right side stiffness is not terribly effective. Just makes it tolerable. The good part of my yesterday was swimming and sitting in the jacuzzi and laughing with my wife. As usual, I woke up early around 5 am today, after a bunch of wacky dreams, drenched in sweat. This stuff sucks. Oh man -S
  22. Good morning!!

    Each night I burn the records of the day --at Sunrise, every soul is born again.
  23. Dropping Things

    Thanks Discovery, i hope you find the bravery in your soul that helps you move forward. im still trying to get used to this brave new world. I was initially diagnosed with essential tremor by a non MDS neurologist. And now this. Most folks who have been on this board read my posts and come to the same conclusion: PD. Well, so be it. i just want the meds to work and my life to settle down..but that's what everyone else wants too, right. I'm hopeful that Azilect will give me some relief, but I'm also exercising every day and trying to change my diet. I'm going to take up Tai Chi, try yoga and even meditation. My MDS said my Datscan next year will probably also show up as positive for PD, so he's definitely sending mixed signals. He didn't say I could do nothing and this would all go away by itself. Today I went to the chiropractor who tested my reflexs on my right knee (the affected side). Not surprisingly I don't have any. Last week the massage therapist said my right side of my body feels like concrete and she worked on me an extra 1/2 hour trying to get it to loosen up. So, I'm dealing with this as pragmatically as possible. Being on this board and reading others stories is helping me to stay grounded. Not to mention: I keep dropping stuff on the ground and have to pick it up and keep it moving. That could be the theme song for my life. -S
  24. Dropping Things

    Hi Linda, My MDS would prefer to call my issues a "dopamine deficiency" and say I'm "very early in the course" of this disease, with a mix of non-motor symptoms and mild motor symptoms that require treatment with the Parkinsons Disease drug called Azilect. Despite a positive DAT scan, he's being very cautious and watching me in hopes of halting progression into full blown parkinsons. Ok, sure, whatever, I'm not an MDS. But I'm also not in the habit of taking drug for problems that don't exist, So i just think of myself as having very early Parkinsons and act accordingly. Especially since Parkinsons has now altered the course of my treatment for osteoarthritis, degenerative disc disease, and bulging spinal discs. -S
  25. Rasagiline and other drugs

    I'm about to start taking Azilect in about 5 days. Thanks all of you for the wide range of opinions about this med. I got a 90 day supply for $0 through my health insurance plan, but - my $3000 deductible kicks in Jan 1. The non insurance cost for 90 day supply of Azilect is $2150. That presents a philosophical question: do I pay my mortgage or take PD meds. The other drug I'm now taking for pain management from spinal issues is called Horizant (gabapentin-Er). That drug is $1100 for a 3 month supply, but $50 With insurance. This is becoming an expensive trip into PD land. Can anyone show me the exit? Whew! -S