helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

Quietstill

Members
  • Content count

    546
  • Joined

  • Last visited

  • Days Won

    33

Quietstill last won the day on April 15

Quietstill had the most liked content!

Community Reputation

445 Excellent

About Quietstill

  • Rank
    Advanced Member

Profile Information

  • Gender
    Not Telling
  1. 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.
  2. 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..
  3. 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.
  4. 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.
  5. 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.
  6. 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?
  7. 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.
  8. 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?
  9. Glad things are calming down a little. --DH has compromised kidneys (I swear from PD), when pain and swelling becpme an issue, our Primary Phys has said to alternate one N-said then aspirin for the next dose as needed for up to 48 hours. You might ask your Dr about the cost/benefit/risk. It really helps here for inflamation. I've been thinking a lot about you, and want to say in all facetiousness "Take care of yourself!!!" (and yes, the damn basement is still flooding, I am taking N-saids myself as arthritic elbows don't like mopping).
  10. Wow. What a trip. I am so glad it worked out; the angels were working over time! Boy, the other big lesson is take care of yourself better. I know, I know, I'm preaching to the choir, we get told that all the time. We know it, we live it, and it becomes another weight on our shoulders when people tell us that, yet life doesn't always give us the time to do so. I am guilty of that myself, I found myself in the ER last year, and they wanted to admit me, but I declined against med advice, because I had several things that had to get done that day. I got those emergency things done, and was back and admitted the next day for 24 hours. Wow, stress is a killer, and it never ends. Yet I know it's true. So no extra pressure, just thankfulness you are okay, your DH did well, and life goes on. No stress, right? I'm off to mop the flooding basement... every 2 hours... too much rain, the water is seeping up from the basement floor. Sigh. DH is stymied by it. No stress, right?
  11. Intrusive government control? Not a problem. The world may get much simpler in the future as more and more people use harsh and unkind words to silence any dissent. Guess what, I appreciate your opinions, but why not give us your opinions rather than just tell us how 'bad' and coercive we are? We can discuss opinions, and even gain new understandings of each other, but criticism without substance is not designed for any kind of solution or discussion.
  12. Above I posted on sexual assault as a pre-existing cpndition. Clarification by the WaPo on sexual assault as pre-existing condition https://www.washingtonpost.com/news/fact-checker/wp/2017/05/06/no-the-gop-health-bill-doesnt-classify-rape-or-sexual-assault-as-a-preexisting-condition/?utm_term=.099cf1d2e063 They give this a claim 4 pinnochio, as 48 states have laws on the books preventing just this allegation. However, if you wade through the article, "health Status" is a factor in pre-existing conditions. If you get a prescription for an AIDS anti-viral (common in the 72 hours after a sexual assault), guess what? Your 'health status' is flagged. So the 4 pinochios are somewhat misleading. You cannot be flagged as a sexual assault victim, only if you receive treatment for sexual assault. I guess 'good girls' don't tell.
  13. Mandating insurance by large (proftable) corporations? Doesn't work. The company you mention has been fined numerous times for cutting their employees hours every sixth week to make that employee's hours ffall under the 'required' amount for insurance. Sear used to do it also. I worked for years at Sears, 40 hours for 5 weeks, 28 hours for the 6th week. In that way I wasn't "Full-time" and eligible for benefits. White-collar high paying corporate jobs are not available to all people in the work force. I'm afraid telling people to get a job with coverage is not very realistic. And remember, I pay for my own insurance right now, no handouts. What would you suggest I do next year when Trump signs that my insurance can increase to 5 X the rate of someone in their 20s? People really are trying out here in non-corporate positions, but Trumpcare is making it worse for anyone who is not making 150K a year. Sorry, those are the facts of the ACHA. And no, I don't get a free phone either.
  14. The markets will work better than you think. Parkinson's is now on the list as a pre-existing condition that you can be denied insurance for having. If you have Medicare, PD is still covered. However it is now pre-existing for any supplemental medicare insurance. Good luck with fighting market forces on that one.