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Quietstill last won the day on April 15 2017

Quietstill had the most liked content!

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About Quietstill

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  1. Quietstill

    For caregivers only

    Sarakay and California, we're still mobile here, but DH has non tremor PD. I've gotten the leaving the burners on thing under control, but am now dealing with the fridge being left open and now, water faucets turned on and walked away from. It's always something, and I know I have to take a small vacation by myself. Hard to do, but necessary.
  2. Just an odd thought here; the new Trump TV. Sigh. As a reformed academic who used to study autocratic states... I would suggest balancing that station's coverage with an unbiased source. The Hill? NYT? even USA Today. Certainly not Fox.
  3. Quietstill

    Morphine in hospice care

    afroney! I hope you are safe at home now. I am glad to hear that you weathered your hospital stay. It is good to hear your voice.
  4. Well, yes and no. First, I am thankful that Senator Collins and Murkowski stayed strong along with every democratic senator. The devastation to people who rely on Medicaid (anyone over 65 who is hospitalized, 50% of all women are pregnant and their babies, all children facing a health crisis, all disabled people) would have been extreme. Nursing homes would have closed, and rural hospitals shuttered; all for a tax break for the top .1% of wealthiest Americans. The problem remains, in particular the 2-5% of Americans who are covered under the individual markets. That includes me. The over all market has stabilized, and health care costs and insurance rates for the 95-98% of the ACA market are actually growing at a slower rate than previously. That also stabilized the market for those lucky Americans with Employer based insurance. As I have said before, those of us in the 2-5% individual market are carefully targeted; we are middle class and middle aged. We are perfect poster children for the 'horrors' of managed care. Congress is already on the ACA. The threat is to take them off the employer sponsored ACA exchange (negotiated by the Federal Employees Union of Washington DC) and force them into the individual market. I can guarantee that the Senators and Representaives can afford the individual market. That body consists of very wealthy people. However, I can also guarantee that the clerks, typists, maintenance staff, custodial staff cannot afford the individual market. So who is being threatened by the President? The Senators? Nope. This is actually mean-spirited posturing, unless President Trump really doesn't have any clue about how the ACA works. So either cruelty or ignorance...Take your pick. Here is a link to Politico article that specifies how Congress gets its health insurance. http://www.politico.com/story/2017/08/02/obamacare-subsidies-trump-threats-lawmakers-react-241244 These threats also impact me very heavily, as they undermine the Individual market as insurers have to guess whether the Federal Government will or will not meet their contractual obligations. So for me it is also a lose-lose proposition as he continues to tweet.
  5. Quietstill

    Morphine in hospice care

    Oh Genden, I am so sorry. This is so hard. I have several experiences with morphine at the end of life. You know your husband, you love him, your decisions are correct. My experience is with my father, mother, and good friend. Cancer, emphysema, and PSP. Morphine is wonderful for extreme pain, and very helpful for discomfort and agitation. That is where knowing the person comes in. If he seems uncomfortable (bedsore) or restless/agitated, a low dose can be a very good thing. It is hard, because you end up second guessing yourself all the time. Don't fall into that trap. I used to judge it by how deep the sleep, and what was waking mood. If sleep was too deep, and waking was grumpy (facial expressions) then I used less. If sleep was light, broken, and waking was uncomfortable, I used a little more. Morphine can suppress breathing, but that is at a higher dose than normal, so not often a worry unless he has a chest cold or some form of pneumonia. The nurses are great at discussing this, so I encourage you to bring this up honestly with them. I hope this helps, I wish I could actually do something to bring you comfort and respite. I will continue holding you in my thoughts at this sad and exhausting time.
  6. Quietstill

    Better Care Health Act

    Patriot, are you aware that 1/10 veterans who need help get their health care through Medicaid? The rest use the VA system. You are advocating for harming vets also, along with disabled children and seniors. Just so you know.
  7. Quietstill

    Better Care Health Act

    Hi all, Is everyone aware that 65% of the people in nursing homes are on Medicaid? And that the current Senate bill will cut Medicaid by 25%? Not to worry, KellyAnne Conway says anyone who loses coverage can just get a job with benefits. Or else you can call your Senators and tell them what you think. Either yes to the bill or no, a democracy needs its people to tell their representatives their opinion.
  8. Quietstill

    30 yo Husband diagnosed with YOPD

    Welcome. There's some really good advice above, and it's all right on spot. I would add that having a period of panic at the start is helpful, and (to a certain extent) I encourage it. Panic allows us to process life changing info, and then when we remember how to breathe again, we realize that life hasn't changed, and so it goes on. Hold to that, how you are the same person before the diagnosis, and your DH is still the same person you love after the dx. My DH was dx'ed at 64, but there had been something seriously off for an entire decade. I'm in my 50s, and when the MDS told us, I was relieved it wasn't something much worse. I still remember it knocking me for a loop, so talking to people who have been through it really helps. Good luck, stop in occasionally, and dm if you have any questions.
  9. Quietstill


    Rigidity. Sigh. DH has non-tremor PD; combined with RBD. He does Rock Steady boxing (that helps with mental acuity), does Tai Chi (flexibility), and deep tissue massage (again flexibility). Number one is call your MDS. PD ain't cheap. Rock Steady, Tai-chi, massage aren't covered by insurance. Neither is Acupuncture (once a month) which I don't perceive as making a difference, but he does, so I encourage it. If you can afford it, find a good massage therapist and go 2x a month. It will be painful, but it has made a visible difference here. Think about one major PD sign: Cog wheel rigidity. It is called that because your brain activates a muscle, and motion is completed. However the 'release' command does not fully go through, leaving that muscle contracted a little more than it was before the action was initiated. And so, throughout the day, the muscle remains tight, and ratchets tighter every action. Hopefully it fully resets and smooths out when you are relaxed and asleep. My DH ratchets tight his middle back, hips, and shoulders. Sometimes his hands will turn bloodless and white and cramp. Is this dystonia? Hard to say. I do know when that occurs, if I work on his upper arm, near the armpit where the ulnar nerve passes by, there will be a knot of rock hard spasmed muscle. If I can get that to relax, his hands 'pink' up and the pain goes away. My friend who had terrible dystonia in both feet (bedridden) was greatly eased by massage. I hired a massage therapist to come in and show me which muscles were involved. and how to address them. Her 'knots' were in her inside calves, right where the calf normally starts to round out, above the ankle. After 2 weeks of my working on her, 15 minutes a day, her pain lessened quite a bit, and her feet were twisted only occasionally, rather than most hours of the day. Over in the UK, they do a lot of massage for PD. We don't here. If I was forced to drop all but one of DH's therapies, the one I would keep was the massage. Call your Doc, explain the situation, and see if the MDS has ideas. If not, good luck, and try to relieve what you can..
  10. Quietstill

    Vivid dreams?

    New Normal, This may not be 'vivid' dreams. Sounds more like RBD (Rapid Eye Movement Behavior Disorder). Call the Doc and describe him talking, giggling, and most importantly moving around during those episodes. It's no big deal if it's dealt with, but can be dangerous. In RBD the person is acting out his dreams, normally we are paralyized when we dream. With PD, that can change. You don't want someone fighting off a burglar in real time when they are just dreaming that scenario. My DH threw a bookcase (loaded with books) across the room one night. Sprained his back doing it.
  11. Quietstill

    Tumeric and other supplements

    Hi everyone, I ran across this article this morning and thought it was important short reading. https://www.nytimes.com/2017/05/11/magazine/he-was-on-blood-thinners-and-supplements-could-he-still-have-had-a-stroke.html?rref=collection%2Fsectioncollection%2Fmagazine&action=click&contentCollection=magazine&region=stream&module=stream_unit&version=latest&contentPlacement=39&pgtype=sectionfront Basically it is ONE (and only one) cautionary tale of unconfirmed harm by supplements. We all love the idea of 'natural' remedies, and I actively seek out information on trace elements. I am a firm believer in Tumeric, we have a curried dish at least once a week with black pepper to activate the curcumin within the tumeric. I resist taking supplements, because trace elements are just that: traces of essential elements. Pills give you a lot, and very quickly. The story points out that most curcumin pills have between 1,000 to 2,000 mgs of curcumin, whereas 1 tsp of tumeric only has 50mg of curcumin within it. I will continue to serve curry often, but thought the article was a good example of a little may be very good for you, but immoderation can be a crap shoot. Supplements are not regulated, so you never really know what the effects of massive doses might be. About 3 years ago one study was done on the effects of rosemary (rosemary for remembrance) among elderly. They found that 1 tsp of rosemary a week seemed to make people mentally sharper, but eating more than 3 TBsp a day actually hurt mental acuity. Besides, it tasted bad at that level. So that was a warning to me; if it tastes bad, it's probably bad for you. I can't imagine eating a curry made with 200 tsp of tumeric. Yuk.
  12. Quietstill

    Social Security Disability - Trump's Budget

    There are some reasonable underlying points here. I want a safety net for those who need it. I also think we could do a better job of eliminating fraud and waste. Okay, I am liberal. Does that mean I am stupid? No. Okay, there are conservatives. Does that mean they are heartless? No. So, if we can agree we are all Americans, what do we want? How about a reasonable safety net and a look to eliminating fraud and waste. This proposed budget, which is pinned to the repeal of ACA and replacement with AHCA is not it. Sorry, these are real cuts. $880 Billion will be cut to Medicaid through the repeal of the ACA. Great, that's good, right? The govt saves money. Nope, 575 billion of that money goes right to the top 1%. $375 billion goes to 'block grants' to the states. So do the math: 880 savings less 575 tax cut = 305 billion savings. But 375 billion is going to states for a block grant.... Take a wild guess whose taxes will be going up. This is just math, no ideology here. That's part one. Those are real cuts. Now go to the budget. More cuts. This is not proposed cuts to future growth in spending, that is accomplished through Repeal and Replace by throwing 23 million off insurance, this is just 30% cuts to existing spending. Do we need to save money? Yes. But a naked 30% cut across a program with no reform of waste and abuse just means starvation and real degrading hardship to the helpless among the 30% tossed off the rolls. There is no winnowing or examination here. You may 'catch' a few free-loaders by accident, but not that many. Do I think the budget will pass? No. It turns the stomach of even Mitch McConnell, that shining example of compassion. Facts matter. Numbers don't lie.
  13. Quietstill

    Social Security Disability - Trump's Budget

    The problem is all this righteous anger over freeloaders does not solve the problem of cutting 30% of all SNAP. Not looking and getting rid of fraudlent claims, just throwing 30% of all recipients off SNAP. Is that acceptable to you? Cutting Medicaid in order to give the top 1% a huge tax break runs into the problem of old folks, sick folks, and very young folks. Is that acceptable to you? And yes, foerthought is great. Mt DH paid for private disability insurance for 37 years. 37 years. Do you know what we got? the ability to pay the D*** insurance company back the 5 months of payments once SSDI came through. We were allowed to keep $330 dollars a month. Nifty huh? But thankfully the Hartford goes on making great dividends from collecting 37 years of monthly payments. I should have just started a Roth IRA 37 years ago. We would have been far ahead. As for the billionaires? Sorry, their actual tax rate in under 17% with all the pass throughs they get on investment income. That's why Trump paid himself $5,000 a year from all 220 of his companies. Hence no taxes except the one year that he took a regular salary, 2005, (coincidentaly the year he and his wife had to be above board to get her citizenship). Look, I am not denigrating Trump. He said himself not paying taxes means he's smart. I just am asking do you find cutting SNAP and throwing old folks out into the street from nursing homes acceptable. If not, what are your suggestions?
  14. Quietstill

    Social Security Disability - Trump's Budget

    Oh man. This isn't an article, it is a screed by a subscriber. He writes well, and slants very hard. Some of the programs he ascribes to all those freeloaders do exist. But read carefully. For example, he points out " a single parent family of three earning minimum wage ($14,500) per year has more disposable income than the family making $60,000 per year. " Really? Even if that person with 2 children got the 'free housing' (which isn't free, it's 25% of their income, AND there is a waiting list of 8 to 10 years in most cities that stretches to 15 or more in some cities), do you really think that single parent can pay childcare AND still have more disposable income than someone making $60,000 a year? Finally, the author Richard Finger has an interesting bio. He is upset at the freeloaders because he is an investment advisor specializing in derivatives, short stocks, oil and gas speculation and hasn't done very well since his industry caused the meltdown of 2007. I would submit he and his ideas actually prevent us from getting to a solution we can all live with and sleep well at night.
  15. Quietstill

    Social Security Disability - Trump's Budget

    SSDI is difficult to get. Few people get it without several applications. Is there fraud? Probably. But this is not an effort to counter that fraud, it reduces the fraud by reducing all people on it, rather than the questionable ones. It is the same as with the SNAP program. Are there hungry people in the US? Yes. Is there fraud? Maybe, maybe not. Applicants have to reapply every 6 months and provide financial records. If they lie, it is a felony charge. But just cutting 30% of SNAP means 30% of the children and 30% of old people on SNAP will go to bed hungry. But that's okay, they can get one meal a day at school! Oops, school lunch programs cut... Or through Meals on Wheels! oops .... Look, the point is, what do we want as a society? Do we want people who can't work to starve? Children? I have trouble with this. The other thing to remember about the other cut (Medicaid), it pays for nursing homes. Medicare only covers 35% (approx number) of the cost. Do we need reform? Yes. So let's decide what we want, and demand it. How about no children starving? No old people starving? What parameters do we need to accomplish this?