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Feisty Folder

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Feisty Folder last won the day on April 19

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About Feisty Folder

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    Advanced Member
  • Birthday January 11

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    Female
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    Central Washington
  • Interests
    Origami, Swimming, volunteering at church

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  1. Kaypeeoh I'm pretty sure you just set the new fourm record! I know you beat mine I completely agree with new normal. The thing that made me the absolute saddest about my recent illnesses wasn't the feeling miserable, it was realizing I was wasting time I could spend with mom. If your symptoms are easy to ignore than just wait awhile So we're all planning for the autumnal equinox, in 2078, At 7:04 a.m., when sarurn is in retrograde then? I'll bring the sparkling apple cider
  2. So I've been watching a lot of the TV show " speechless" recently, which is awesome, go watch it right now. It's a sitcom about a British mom, lazy dad, smart aleck first born son, geeky middle boy, and ultra competitive youngest daughter. Oh and that oldest boy, he not only has cebral palsy that keeps him from speaking, but NOT communicating, he's actually played by an actor with CP. The show was created by a writer/producer on "friends" and is basically inspired by his life as the 'normal' child of a 'special needs mum' . I don't even LIKE sitcoms, but this one doesn't just make you laugh, it makes you FEEL. And not in an after school special sort of way. All i can say is all the families I know in a similar situation (including me dealing with my mom's dementia) is sure they are being spied on for the show. Me and my Best Friend, who's got a daughter with severe developmental impairments, have to pause every few minutes to say "that's exactly like the time when..." Unfortunately speechless is still a baby, not even a season old, and still not officially renewed. Any way, my point is I needed more entertainment. So I decided to write a sitcom on my life And so here's a scene from the 'pilot', reacting the unsuccessful bubble bursting of a family member- Dad- hi kid how you doing? Wendy Voice over- that's my dad. If he were any deeper in d’ Nile he would have drowned. As it is his body has got to be pruny from all this time spent floating up to his earlobes in it. I'm an only child, yet somehow I didn't expect to grow up to be the sole adult in my family Wendy- (glances at mom) fine I guess Dad- how was your drs appointment? Wendy (still looking at Mom)- good? Dad - so the Parkinson's is better than? Wendy- ummmm… let me call you back on my cell phone. (Hangs up landline) excuse me mom, I need to go yell at dad Mom- he doesn't understand Wendy- no he doesn't (kisses mom on the forehead than moves to the hallway pulling out her cellphone) yeah, hi Dad. It's me again… I don't know what part of incurable progressive neurological disease you didn't understand…(sighs)... Yep mom's dementia isn't any better either Vo - the man has two Masters…. And multiple traumatic brain injuries… three chopper crashes in Vietnam and two major car accidents will do that to a person. Until a decade ago he was the Ill one in the family. Now I'm convinced he's going to outlive us all… including that kid who's baby shower I attended last Tuesday… my dad's just too stubborn to die. Not that I want him dead, just a little less dense than depleted uranium would be nice Wendy- ...okay I love you too Vo - That's the first thing I said all day I actually meant. /Act break/ I think the scenes funnier with the preceding stuff, but I'm still not entirely happy with the teaser, maybe when I'm happy with it I'll post it. Surgery went so well today insurance refused a second night in the hospital, that didn't entirely please my medical professionals, given I still haven't been able go pee without assistance. My Pollyanna impersonation is busy saying everything will be fine, I'm going to be great once I haven't been awake for 33 hours straight. The Vegas impersonation is busy trying to start a betting pool about how long before I'm right back there. At least this time they drained my bladder before sending me home, instead of trying to send me home without doing anything about the fact I hadn't peed in 12 hours. The nurses aide who wheeled me out and I have a history, she's been with me at some point during all three admissions in the past month. So when I said my usual "don't take this the wrong way but I hope I never see you again" it turned into an Abbott and Costello routine. This relationship just isn't working for me any more, I've got new interests, like not being poked with needles We've been growing apart... I'm pretty sure this giant bariatric chair is responsible It's not you it's me. It's just I've changed since we met, I've quit the destructive relationship with my ovary and lost ten pounds. I need to explore my options Like other hospitals *And the last one that had us all bursting with laughter- It's just the wrong time, wrong place I don't know if this is the wrong time but it is definitely the wrong place A friend found me because she recognized my laughter, which was a really sweet moment I wish I could remember all the clever things I said last night. One nurse, who was expressing sympathy for mom and I developing our respective diseases so young I gave my standard "yeah, I come from a family of over achievers", made her bust out laughing, my "gotta catch them all" remark in regards to my long list of diagnosies she didn't appreciate so much demanding "not tonight!" Got lots of material for my 'sitcom', I think there's a trilogy in there somewhere. Now if only it would write itself.
  3. I'm really lucky. I'm surrounded by people who've allowed education to be shoved upon them, for example handing the NPF green book to everyone who knows my Last name. Had long uncomfortable conversations about impulse control disorders and what the future may hold in terms of increasing disability with anyone who's given me a ride in the last two years. And if any one in the ride giving category sees any signs of impulse control disorder, or anything else that worries them that I discount when confronted, they are to bring those concerns to the people in the final category- the people who hold my hand in the hospital and know my advance directive says I don't care whether or not I'm creamated, so long as I'm buried under a grave marker that says something clever- the ride giving people are to report to the hand holding people because the hand holding people are all signed off as being able to have a conversation with my doctor. In turn my doctor knows if I try to revoke all their permissions at once, he at least needs to be a bit suspicious. There was a thought in there somewhere, I swear. I have the best luck in friendship if not in surgeons. I think that was the point. This made me laugh for reasons which will be clear in the text exchange I had with one of my care workers after being admitted to the hospital tonight (names changed to protect the guilty) Summary of preceding conversation- I'm in the hospital for the abcess the first surgeon kept misdiagnosing as something else, then trying to run out of the exam room as I call after him "I don't know what it is, but I know for a fact it's not that", he'd do a more thorough exam and discover I was right. Then today he tried to send me home unable to empty my bladder, I first called him about the urine retention on Tuesday night. His response? "Well I'd try to get some sleep than try again later." He's got a brain when he slows down but he's busy, and apparently refuses to stay late, he was double booked all day today, but somehow got out of the exam room with me, his last patient, by 4:50. Sorry that turned ranty. Anyway we'd been using my anger at Dr scams to get a little endorphins going because my new surgeon needed to come in and decide the game plan before they could give me anything So the text conversation I'm going to regret posting in the morning- CW- Everybody likes you, Feisty. You're a likable kinda gal. Me-I don't know, I think the grouchy "people keep asking me that!!!" In response to "how are you doing" that I did at least a dozen times today, was a little jerk-us. Also the "are you s*itting me?" In response to your Pollyanna impersonation yesterday was a bit much Me-Sorry I groused at you by the way 😞 Me- In defense about my response to " how are you doing?", I started with "do you really want to know??" And went down hill from there, the only person I actually yelled at was Dr scams, and he'd just heard my response to the last five people CW-If I had my foot caught in a bear trap and people were asking me how I was doing and the one who could actually release my foot and fix it was basically ignoring me, I might, just *might* be a tiny bit short tempered. Me- Well the assistant to the guy who's going to fix the damn bear trap, the guy who's replacing the one I "accidentally" hit over the head with an axe (oops, that darn tremor. Oh well) was just in here. And the assistant promised to go get a pry bar and get to work. (Translation for the currently entertained NSA hacker reading this: the nurse is going to give me stomach meds and then the good drugs. Sorry your going to have to spy on someone boring soon. Maybe you can convince your boss this is actually terrorist code- only send the good looking bachlor swat agents though, okay?) That was before they gave me the good drugs, by now I'm flying so high it's going to be a shorter trip to Saturn than home TL. DR. Ignore me, ignore the off topic post, just don't pay attention to the girl behind the room deviding curtains. I'm having surgery tomorrow, on lots of drugs but still in lots of pain. Aslo lonely since my usual hospital handholders are either out of town or sick themselves. I was finally able to get the last sick one to leave me by pointing to my nurse and saying "we know him, this is the third time we've seen him this month, we like him, he knows what he's doing. Go home before this becomes a two for one hospital stay" I've got amazing friends, and I feel sorry for anyone who says " At least I have my health" Their about to give me more drugs hopefully I'll be able to sleep Night-night, and ignore everything I just said. Unless it was something clever 😀
  4. Have you tried rephrasing it as something other than gluten? Maybe something like "don't eat anything off that talble" or "only eat what the staff gives or the snacks in your room" and the second is probably better because it's phrased in a more positive way. I know with my mom who has dementia I didn't try to explain the difference between the sidewalk and the parking lot. I just explained to her that she is more than welcome to go out the doors that open on to grass. But if she opens a door and she sees pavement she needs to find someone to go with her. Or an even simpler version is "you still remember you need a pavement pal right?" And I know this second one won't work for most people, but my mom loves children's books so I keep an eye out for ones that stress safety. On the OFF chance your dad is like her in that, there are a million kids books explaining gluten free these days. Of course if your dad's problem is impulse control or hallucinating none of that's going to work. Leaving me with just one last, ridiculous, IV pain medication fueled suggestion- get a whole stack of diet books, claiming going Gluten free will get you that beach body by next Tuesday. Leave them wherever the staff take their breaks. Then cross your fingers and hope enough of them start a GF diet that, or even just the one who's job is to purchase the treats, that they'll start switching to gluten free, so they can still nibble on the food for the residents. You should completely ignore that last suggestion if the staff is majority male- actually you should ignore it no matter what. I hope you find something that works
  5. I do it occasionally, or when I'm stressed or in pain like the past month, ALOT I'd never even thought to ask that question, I just assumed it was normal. I'll be interested to see the responses (so that means you. Yes, YOU need to type at least yes or no and press reply) PS- I don't think I'm being any weirder than usual, but I've been admitted to the hospital with an abcess and I've been given the good drugs, the one that had me doing a Darth Vader impersonation with my pulse-ox a decade ago. So if you can't be patient with me than feel free to ignore. I really would like to know how common this is though. So reply, cause Bill and I want answers and I would totally consider it a get well present- I've never seen a study on this and my inner Hermione needs to know!
  6. I can smell better than anyone else with PD in my support group, says the pathological competitor. *We just won't talk about the fact that I lost to every single caregiver in attendance*
  7. Hi, wish you weren't here for me to meet, but glad you found us. I second what Linda said about posting on the dr fourm and making sure your seeing an MDS. Also second what she has to says about prayer, I hope you get things sorted out soon I also second what Swva said, particularly since it was your primary who said it. Primaries spend med school studying horses not zebras. I was diagnosed with at least half a dozen different things before Parkinsonism was even on the radar. It sounds like you have at least one other medical condition which makes diagnosis harder. Deep breaths, calm thoughts, try to get some rest (says the hypocrite posting at midnight) Hang in there - Feisty
  8. Good, I'm so glad you got through it.
  9. Fainting at the sight of blood is one problem I don't have, given my childhood that's for the best: My dad was very accident prone, but even more ER adverse. When he'd get a laceration mom would grab the sutures and I'd grab the scrubbing bubbles. One time an arosol can exploded, leaving shrapnel in dad's arm, forcing an ER visit. My parents returned home to find 16 year old me had done a chore without being asked. I replied to mom's graditude with a sigh and the words "I clean up the blood. It's what I do, I clean up the blood". This statement led to the family joke that I should have been a political spin doctor Speaking of spin, the friend I'm staying with and I have a new game, she names a movie, I come up with a smart aleck summary. Here's a few favorites- Pirates of the Caribbean - pirates spend ten years searching for Captain's lucky penny. Gilligan's island - a sad tale of missed opportunity - had the professor spent all that time with access to actual technology, we'd have warp drive by now Road runner - Coyote, who failed phsyics, trapped in the animal kingdom's hunger games Pocahontas - sheltered man from a wealthy family falls in love with a hippie Dianne - hope where ever you are right now your gut is being infused with yummy duopa. - Feisty
  10. I've got no suggestions for managing anxiety it self besides all the things you've probably heard a million times before: take a deep breath, listen to music, blah, blah, blah, blah - I've never found a really great coping strategy, unless you count writing REALLY long posts, which isn't much help in the moment. Stress induced tremors are really annoying, PD gives you a poker face, but then it goes and ruins the act with your hands. I have found a solution or two though - - my neurologist has approved my making medication adjustments on the fly. If it's going to be a stressful day I take a little extra Sinemet. If something stressful occurs and tremors start I'll take a Sinemet, chew it too bits then chug water to get it working as fast as possible. I don't know what your medication regimen is and you need to speak with your Dr first, but that stratagey got me through mom's bladder infection in February - if your main concern is concealing your tremor, I find the bathroom a good place to hide until the Sinemet kicks in. Going for a walk gets me alone and often helps calm things. Ducking behind counters or going for "a nap" I have also used. Admittedly the only person I'm trying to hide them from is my demented mother. - on the other hand if you're needing the tremor to calm and don't care about being conspicuous then you can use what I call "the neuro exam trick". Move the opposite hand from the one you need to stop tremoring, like at the neurology check-ups. I used this so they could draw blood recently. Worrying the people you love is a double edged sword, on one hand you're grateful they care, on the other you love them back and so want them protected. At least that's how it is for me. I hope something here helps, and things return to whatever passes for normal soon. Hang in there - Feisty
  11. Helping parents while you yourself are sick is a tough one: I've been there, done that, couldn't afford the T-shirt since my debit card number had been stolen. It stinks, it's a terrible, stressful situation that I am so sorry is happening to you. That said, if you are comfortable sharing, what are your specific concerns? I know that there are several people on this form who are either having or have had similar situations. At the very least you'll be heard and understood, and you may even find some good advice. I know the encouragment I received here a year ago was invaluable. And even though I have more responsibility for my mom now than I did then, I feel alot more confident in my abilities now. So what is it specifically that's got you worried? If you were just here to vent and not for advice than disregard the previous paragraph 😊. I wish you and your parents the best, and hope things settle down for you soon. Hang in there - Feisty
  12. When I was going through the diagnostic process it was the holidays so I wrote "the twelve days of sick-mas" I can't remember anything else that song wished for, but in place of a partridge I wanted "and a tricorder from star trek" Currently I'm wishing for a dermal regenerator.
  13. Working with a SLP can definitely improve things, it has for me. A few more ideas to try until you see your doctor. It will take experimenting, what helps is different for everyone - - try different temperature water, everything from ice cold to hot. See if one temperature is easier - try different sized drinking glasses, wider, deeper, small opening. Goodwill is a cheap way to do this - see if straw or no straw is better - some people swallow carbonated water better than flat - some people a strong flavor helps, sour, sweet, try different water enhancers - how you hold your body is important - sit up straight and then try holding your head in different positions, chin tucked or up, right left and every thing in-between. For me the best position is head slightly tucked and turned to the right, but that's me. - lastly my favorite thickener is "thicken up clear". I buy it from Amazon. Doesn't clump or taste awful.
  14. I wouldn't call it consise or informative but this is what I posted on my blog April 1st: Happy Parkinson’s Disease Awareness Month April is national Parkinson’s disease awareness month, and since I have Parkinsonism I was planning on doing a big post. A post talking about things like the early warning signs (like changes in handwriting), as well as some of its lesser known symptoms (such as trouble swallowing, losing your sense of smell, and constipation; Parkinsonism is the gift that keeps on giving), then end the post with the fact that yes you can develop Parkinsonism at 32 (your drs are just going to diagnosis you with migraines, myasthenia gravis, an aneurysm, strokes, and seizures before they get around to giving you a pill that makes you vomit twice a day; but hey, at least it takes away your tremors). So I was planning on doing a fairly long post, but then my body went and decided to develop a large ovarian cyst (what can I say, my body does weird stuff; but at least I get great parking). In place of the post I had planned, I will leave you with what I would call my Parkinson’s disease charity, were I to start one: Cure Rotten Awful Parkinsonism Michael J Fox totally wishes he’d thought of that acronym first!
  15. Genden- I am so sorry for what you are going through. I'm sorry hospice was slow to respond. I'm sorry you are sleep deprived during a time when you need that respite most. I'm sorry Parkinson's doesn't fight fair. I'm sorry that barring a cure we are all going to lose this battle. And I'm sorry that I don't have any magic words to make this hurt any less. I am praying for you. Linda- yes I am the author of that poem. Creative writing has been a great stress relief for me recently