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Feisty Folder

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  1. Feisty Folder

    Moved from MA to VA - new doc questioning dx of PD.

    Get a third opinion. And if your meds are working for you and causing no side effects I can't imagine why you'd want to mess with that. You can correct me if I'm wrong, but it sounds like a doctor whose worked with you for less than an hour is suggesting messing with the work of YEARS to get your Medications right, out of curiosity. Some people become drs because they are curious, others because they care. Find one that cares.
  2. Feisty Folder

    Good morning!!

    * WARNING * WARNING * VENTING AHEAD * pressure release required * system 98% of critical * DANGER * scalding steam will be released in 5...4...3...2...1... ( If I'd just typed I was having a bad day you wouldn't have been nearly as entertained ?) Nothing's going horribly wrong at the moment, but it's funny how the little things can get you riled up so much more than the big ones. I think because they're smaller they have the ability to use stealth, tiptoeing up behind you before grabbing you… and we all know what happens when a parkie gets startled ? Also sometimes, like recently, they form some sort of alliance with each other, coordinating their movements, with surgically timed strikes, designed to wear you down until you go mad, sending you running through Safeway swatting at the invisible Pixies flying around your head screaming “The curse Gremlins are after me, quick I need a trophy Emoji to fend them off!” I swear to you that last joke would make sense to my best friend. Unfortunately she is currently unreachable, one of many things that is making me feel a bit down today. But let me start at the beginning I guess my current batch of problems begins at the end of my last batch. The night of my last ER visit, on April 27th, I called my dad to tell him I was having surgery the next day. After I told him my news, he had business so urgent he put another errand on my to do list: he informed me that I needed to get Mom to a notary so that she could sign a new power of attorney. Apparently the power of attorney that got signed last fall, after her dementia was already obvious (The anniversary of her being found wandering is next week, yet another reason I'm a little on edge, particularly since all this new paperwork is bringing up bad feelings about how much I BEGGED for them to get their affairs in order before something like that happened) anyway the power of attorney that's less than a year old doesn't include the word durable in it. For those of you not familiar with all the legal mumbo-jumbo that comes with caregiving, if a power of attorney isn't durable, it will cease to be effective if the person who signed it becomes incompetent, like say with, I don't know let's just pull something out of thin air… dementia. I don't know whether or not I would have caught that mistake, but I do know I've been asking for a copy of those documents since they were signed, and have never been given them. He finally sent the new power of attorney documents to me Tuesday and they got here yesterday, he says he needs a copy as soon as possible, though he hasn't explained to me why. It'll become apparent why that's a problem in a few paragraphs. I'm also slightly irritated because I've been asking to be given limited power of attorney for over a year and while there's documents giving dad power of attorney there's none for me: you know, the person who's been her primary caregiver for six months, and would need some sort of document giving me legal power were my father to die after my mom has become legally incompetent. Last fall, he promised to get their lawyer to draw up documents giving me limited power of attorney for Mom after hunting season was over. Well hunting season is very, very over, so I'm slightly irritated about that too. but those feelings are in the present, for now, let's use the Wayback machine to travel to the very exciting historical period of last week. At the beginning of last week, I started getting intermittent periods of tachycardia. It took 4 days to figure out that I'd been given a bad generic of a drug I've been taking for years. The generic released the medication very unevenly, giving me a side effect I've never had with the name brand or any other generic. My heart rate hit 140 when I was brushing my teeth. I attend some spin classes in which my average heart rate for the hour is less than that. Since I basically felt like I was hopped up on caffeine I didn't get much sleep and also felt generally pretty terrible. I've been spent the rest of last week and part of this week sleeping it off, or at least sleeping it off as best I could. What with my heart feeling like it was beating out of my chest I went to see my primary. Even having to go see my primary kind of irritated me given the fact that just the week before I told him I hoped he wouldn't take this the wrong way but I didn't want to see him again for quite a while (I'd seen him five of the previous six weeks, the one week I didn't see him he was on vacation and I was admitted to hospital). As long as I was there he decided to give me the two vaccinations the computer had been bugging him about for the past month but I had been too sick to receive. I proceeded to develop the worst vaccine reaction I have ever had in my entire life, it's been over a week and I still have intermittent pain and stiffness in my elbow and hand on my right side and I can't lift my right arm above shoulder height without curse words being involved. I've been having to take Advil around the clock, on a schedule. I don't even have to set an alarm: the pain wakes me up 6 hours after taking my last dose. The shoulder thing has been made even more annoying by the fact that the only form of exercise I've been approved to engage in since having surgery is swimming. I'm feeling just enough better to go a little stir crazy. Still up until yesterday I was handling things with my normal shrug and smile philosophy regarding the small stuff, or as mom would say in a bored tone “ whoop-dee-doo”. It wasn't until yesterday afternoon that I started to get grouchy and the trigger was the same thing it always is- mom got sick. (It didn't help that the night before I'd been thinking about seeing my doctor about my shoulder and hoping the next time I saw my primary it would be as Mom's caregiver and not a patient. I know it's irrational to think I wished this illness into being but that didn't stop my Guilt ridden brain from yelling “Bad Feisty! Bad, Bad, BAD!” In response to my argument that “I was just thinking about making an appointment for her hay-fever”. I love science and logic, but when I do irrational I do it REALLY well) So I spent yesterday afternoon beating myself up in between making phone calls to the triage nurse, making an appointment for Mom, and finding transportation to and from said appointment for myself given that today I had a new patient appointment with a urologist that had already twice been postponed due to unforecasted inclement health, and so I needed to be home by the time Medical Transportation was scheduled to pick me up. my rational side was eventually declared the Victor in the boxing match last night, however then I started worrying that Mom symptoms were consistent with a chronic medical condition she has that has previously required hospitalization. Long story short I got almost no sleep last night, had to wake up way too early, my medication schedule was completely thrown off, plus I'm a little hormonal and that particular equation equals a bad PD day. When I arrived at Mom's appointment, I was told our primary had called in sick, meaning that I got to explain mom's medical history to a doctor she's never seen before. While the doctor she saw today is very kind, attentive, and has an excellent bedside manner; that did make the appointment take longer than expected. Then Mom was sent for testing all of which led to the two-hour nap I was hoping to catch between appointments turning into 10 minutes sitting on my couch. At least I was able to catch a quick nap in the urologist waiting room. While all the tests came back negative, when my mom signed the consent form, I had to remind her what her last name was (I told you I'd get back to why that power of attorney thing was a problem). While it's completely normal for a person with dementia to be more confused when ill, I always wonder and worry just a little bit that this time it won't reverse itself when she's better. This time that worry is 40 times louder than normal because in the past I could take comfort that at least my father had power of attorney but now I find out it's not a durable one. My appointment went well it was the the 40 minute drive that was the problem. I got motion sick to the point where I was dragging a barf bag around with me at the appointment and the driver reeked of cigarette smoke setting off my asthma, but also making me think. More about that later- first I'll take a moment to put on my perspecticles. Mom's going to be fine, as am I. I'm healing well from surgery and finally eating well, my weights finally going in the right direction. Dad will be moving here soon, meaning I will finally have a second pair of hands to help out with these situations when they come up. And the truth is I already have a third, fourth, and fifth pair of hands, a friend rearranging his schedule for today in order to help me solve my Transportation issues. I only had to make two phone calls to make that happen, and the first person wasn't home. I have the most amazing people in my life. My new urologist is wonderful, he takes the time to listen, has an excellent bedside Manner, and doesn't treat me like an idiot. Since I like to have a partnership with my medical team as opposed to a dictatorship I think it'll be a good fit. And while helping mom is still one of the most rewarding things in my life, today my best news is that at least for right now I have absolutely nothing to do tomorrow. Now back to what the driver got me thinking about- /the following has been rated S for sad/ When I say the driver reaked smoke, I do mean reaked. I haven't encountered someone who smelled so strongly of cigarettes smoke in years. Given he was employed by a medical transportation company that really tick me off, particularly since when I was a child a close friend died of an asthma attack. Thinking of her got me thinking of her Dad, and for the first time I finally “heard” something he'd told me repeatedly for more than a decade. Our families were close, my mom and her dad worked together. He was a child phycologist and was treating me at the time. After her death he took a month off. At our first appointment afterwards he started the appointment same as always, by showing me a picture chart of emotions asking how I was feeling. After answering I pointed to the chart and asked “how are you feeling?” He answered that he was sad and angry but more than anything he was confused. He then said the same thing he'd tell me repeatedly for more than a decade later “thank you for asking that. You are the first person to ask me that” Some how it only sunk in today that it took a month and a socially inept kid for some one to ask that question. It made me sad but unfortunately also makes sense: the most meaningful thing that was said to me when I was diagnosed with Chiari was “I'm sorry you have to have brain surgery” -it was said by a six-year-old. To this day when someone is hurting and I don't know what to say I think of that little girl and take my cue from her words. And so today I take my cue from another little girl. We have a tendency to avoid discussing unpleasant realities- it's why more than half of adults don't have a living will. And while yes somebody always has it worse, here in parkie-ville we've got some hard stuff to deal with. Sometimes we forget (or at least I do) that emotions aren't good or bad, it's what we do in response that matters. That Dad has spent nearly two decades using his confusion, anger, and sadness to help other families with simlar grief. I've spent the better part of a decade using the fear and frustration I experienced prior to having brain surgery to speak up for people with neurological conditions who can't explain for themselves to their loved ones why they are acting that way. For me at least, acknowledging those feelings existed was the first step to putting them to good use. So please take a moment to really think about it- How are you feeling? And once you have the answer, if you want to share, I for one and more than ready to listen (It's the least I can do if you've read all this ?) After I had brain surgery I developed a one-handed keyboard of my own design. It's centered around the words THE and AND. I did a lot of research on the most frequently occurring letter strings in the English language, ING forms a triangle for instance and Q and U are next to each other. Using that keyboard is more like playing the piano than typing. And I'm completely with you on the typing thing JB. I have handwritten 10 manuscripts, the shortest was over 400 pages. I have a friend who keeps bugging me to publish them, but first of all they are a series and the first few have some fatal flaws, but second of all (And much more importantly!) I never would have written them if I had thought for a second I had to type them! I have a train analogy of my own I've been using for years: My train of thought derailed and there were no survivors... But don't worry search-and-rescue teams are on their way, maybe they'll find some emotional baggage. I usually use the following analogy to explain to non parkies how the slowness and stiffness of PD feels- it's like I'm a stuffed animal whose skin is filled with wet sand. Normally I manage to keep my friends from seeing me unmedicated, not because I'm embarrassed but because I want to enjoy my time with them and take my medication accordingly. Since my health was so messed up this past month, many of my friends saw me unmedicated for the first time in over a year. Some of them saw me unmedicated for the first time ever. Every single one of them remarked that they had either forgotten, or had no idea, how bad things were under the meds. My reply was that since I usually just take a break when I know my meds are going to be low, I had forgotten how bad things could get as well. Sure makes me want to send greeting cards to the scientists who invented carbidopa-levodopa. Maybe the kind that play a tinny sounding tune from an itty bitty speaker; though “Wind Beneath My Wings” would probably sound pretty awful on one of those. JB it sounds like you have a pretty sweet relationship with your mom and the rest of your family too. I truly feel sorry for individuals who say “At least I have my health”. Journeying through life with PD on your back and loved ones beside you is a much better fate than carrying no burdens alone. Which ties in nicely with my final thought- I meant what I said about wanting to know how everyone feels. If you need to announce something to the world, be it joyful or awful, then DO IT! This is supposed to be a safe place to get things off your chest, besides it's good for your health. You'll breathe better afterwards ? I at least am feeling better after all that. And to think it only took four hours of typing! *Danger averted * cool down cycle complete * pressure returned to accepted parameters * We will now return to our regularly scheduled “Good morning!!” related posts already in progress ~Have a wonderful day~
  3. Feisty Folder

    Swallowing Exercises?

    Swallowing exercises absolutely were worth it for me, I improved so much that I was able to cut my thickened liquid use by half and have been able to enjoy some foods I was convinced I would never be able to eat again. A good SLP will be able to both help you strengthen your swallow and help you find work arounds to remaining issues. The first time I dipped a crunchy graham cracker into applesauce and ate it I cried, because I had previously believed I would never be able to enjoy the flavors of a smores again. Now I know I can dip a smores in something like pudding and still enjoy the experience. If swallowing is in anyway effecting your life l would say find an experienced SLP as soon as possible. Summary- in my opinion swallowing exercise are very helpful and a good SLP is worth their weight in gold
  4. Feisty Folder

    Sinemet making me feel sick?

    Could the dizziness be a low blood pressure issue? I know my visions alot more likely to go dark if I stand up too fast when my meds are peaking. Or maybe it's some kind of blood sugar issue surrounding how you time your meals around the meds? Maybe it's the saltines and you've suddenly devolped some sort of blood pressure reaction to salt? ( That last one is a real strech I know, I'm just spit balling) or maybe you've suddenly started eating all the beautiful spring fruits and veggies that are in season, so you're eating less protein overall making the meds hit your system just a teeny bit harder than usual? Or maybe you have a virus that's unnoticeable except for when the Sinemet adds to the otherwise ignorable symptoms(my allergies currently have my Sinemet hitting like a Mac truck)? One last thought- for a few years now, if I don't make a concerted effort to consume enough electrolytes once it starts getting warm out, I feel dizzy and crappy. I don't know what the weather is like where you are but for me that feeling hits as low as the mid 70s, and I could see Sinemet accentuating that. In answer to your question-Sinemet has been known to make me dizzy- but if this is new than you know the drill- contact your Dr yadda yadda yadda Hope you figure it out
  5. Feisty Folder

    Helping with parents

    One more suggestion on the medication issue - don't let them tell you they have everything you take and send your personal medication supply home with a friend until you have confirmed it by them handing the pills to you from their pharmacy. In my first recent hospital admission they repeatedly tried to give me Sinemet in place of carbidopa levodopa extended release, because their system insisted "they have the same active ingredients" (True but regular Sinemet will make me throw up...) On my second admission my best friend ended up having to bring me FOUR of my medications from home at 10pm after already having been told earlier in the day that they had everything but the C/L ER in the hospital pharmacy and to take the rest of my personal medication supply home (this may be partially explainable by the fact that my surgeon originally planned to discharge me the same day, but still really dumb on that nurses part) . I'd been admitted after midnight the first time so I had already taken those doses at home. So the hard learned lesson was keep your personal medication supply with you until the hospital conclusively proves you won't need it. And if you don't have an aware in care kit go order one right now, they are completely free and an invaluable tool for a parky - every single nurse I handed a information sheet to gave me my C/L within ten minutes of when I usually take them, one of them even got me a supplemental dose within thirty minutes of my requesting one the night my tremors were bad, and she'd had to wake up my surgeon to get orders to do so and then get pharmacy to move their buts, something she was willing to do because she knew it was important for me to be able to function. So don't procrastinate order one from NPF now http://www.parkinson.org/find-help/aware-in-care-kit I keep a few extra things with it- - liquid thickener since I have swallowing issues and it once took dietary two hours to send thickened liquids to the ER - snacks I know settle my stomach when I take C/L, obviously ask before eating them - My filled out copy of Caring and Coping: A Caregiver’s Guide to Parkinson’s Disease (which can also be ordered from NPF) I love this rescorce so much I did a review of it for my blog https://www.dementiapuzzle.com/free-resource-caring-and-coping/ - my phone has the app JABtalk on it, to help me communicate when my speech gets bad, making it extra important that I keep it charged. So a cellphone charger is part of my go bag Thanks so much LAD for reminding us all of the importance of being ready for hospital trips. I hope your mom feels better soon
  6. Feisty Folder


    As I understand it it Parkinsonism is to Parkinson's disease as a virus is to influenza. In other words all Parkinson's disease is Parkinsonism but not all Parkinsonism is Parkinson's disease. My neurologist has diagnosed me with Parkinsonism and when I asked him what type he said "most likely Parkinson's disease but I want to follow you longer than 6 months before making that diagnosis" at least that's my understanding of what Parkinsonism is. I don't really care what my doctors call it as long as my carbidopa levodopa works and no one tries to give me Reglan. As for which is perferred it totally depends on what "flavor" you're talking about. Drug induced Parkinsonism is probably one of the best case scenarios, something like multiple systems atrophy on the other hand... I know someone with MSA and that is a scary disease (but also fortunately exceedingly rare) NPF has a great brochure on the subject of Parkinsonism vs Parkinson's disease. http://www.parkinson.org/pd-library/fact-sheets/parkinsonism-vs-parkinsons-disease I'm sorry you're here but glad you found us Hang in there Feisty
  7. Feisty Folder

    Helping with parents

    Saying a prayer for you. Hope everything turnsout well. And good job at not fainting ?
  8. Feisty Folder

    Frustrating day!

    If you want it from a reputable pharmacy you do need a perscription. My neurologist wrote mine. I then faxed it to an online pharmacy in Canada and two weeks later I had it in my hand. It ends up costing me about $20 a month. The biggest hindrance can be finding a USA doctor to write the perscription. But my neurologist has said most MDS are familiar with it. The other thing to be aware of is not to bring in more than a 90 day supply at once, because I've heard customs is more likely to seize it. My gastroenterologist actually used to practice in Canada and waits impatiently for it to be approved here, because he saw how effective it was in his early career. If you do decide to go that route, after a lot of research I choose to use Canadian pharmacy king for myself. The worst side effect I've experienced was a mild headache when I first started it that has since gone away. I was nervous about using a medication that didn't have FDA approval, but for myself I'm so glad I tried it. I hope something I just said helps
  9. Feisty Folder

    Frustrating day!

    I'm sorry. It stinks to watch some one you love struggle so much. I've got no wisdom only good thoughts and prayers for you. Actually maybe one idea. Have the DR's tried dompridone for the nausea? It's a pain getting it from Canada but it's been worth it's weight in gold for me personally. I was even able to reduce zofran which equalled less fatigue. But other than that all I've got for you are my digital "ears" Hang in there -Feisty
  10. Feisty Folder

    Good morning!!

    I saw my mom for the first time in ten days today. I'd been trying to hide how sick I'd gotten after my first surgery from her (and ended up having to spill part of the beans to her anyway). Anywaythe way she greeted me was priceless. I'd knocked on her apartment door and when I didn't hear anything I opened the door. She'd made it as far as the sitting area, when she saw me she got up on her tip toes raising her hands in the air like she wanted to be picked up. And then she just stood there until I realized she wasn't going to come any closer, causing me and my walker pick our way through the clutter I haven't been around to ensure gets cleared up. And when I put my arms around her she just folded in around me saying "it's so good to see you" I spent the next hour getting her calendar back in order if not her stuff. I've been told to go to my happy place alot this past month and it was a jolt when I first realized that what I did today, that's it. Now somebody quote me in a month when I'm complaining mom has a bladder infection and I need sleep. ? Sleep....Yum... I think I'll go try to go get me some of that. Lulled to sleep by images of 67 year olds who think their 6.....And lots and lots of love Good night
  11. Feisty Folder

    Good morning!!

    Beautiful, where is that? It reminds me of a hike I really hated as a kid. The hike part wasn't a problem- mom dragging me up the last little bit, on a cliff so steep the park service had installed chain rails to keep people from falling to their death on the path to get up there, plus my fear of heights... But mom insisted I'd regret not going to the top. Mom as always was right. Switching gears- I finally thought of a smart aleck summary for Speechless - a TV show about a gardener with a great voice who gets magically transformed into a ventriloquist dummy for a 16 year olds inspired act. The exact opposite of Pinocchio
  12. Feisty Folder

    Good morning!!

    Hope you enjoy it
  13. Feisty Folder


    Oh and forgot to ask, yet again, what your screen name means?
  14. Feisty Folder


    Yes, please feel welcome. Look on the bright side- you made a memorable first impression....And second....And third.... except apparently on new normal ?Sorry I just couldn't help myself. Well I could have, but I would have regretted not making the joke for at least thirty seconds. By the way, I'm sorry about your wife, that's stressful. I recently spent a week calling the Dr everyday waiting for tumor markers to come back. I stayed with friends at that point just so I wouldn't go nuts. And it's hard to be the person who's job is to be there. I can count on one hand the number of times in the last decade I managed to delude myself that my brain surgery was harder on me than my parents. And I'm sorry you have this new health concern on top of everything else. Definitely saying prayers for you and your wife. Sorry I didn't say that the first time. I plead surgery brain and no sleep for thirty hours. Please let us know how things turn out for you and your wife. Hang in there Feisty
  15. Feisty Folder


    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
  16. Feisty Folder

    Good morning!!

    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.
  17. Feisty Folder

    A question to ponder...

    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 ?
  18. Feisty Folder

    Helping to Control Celiac's with Parkinson's Disease

    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
  19. Feisty Folder

    Is This Unusual?

    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!
  20. Feisty Folder

    Question about Loss of Smell

    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*
  21. Feisty Folder

    Scared, confused, in pain - young onset

    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
  22. Feisty Folder

    Helping with parents

    Good, I'm so glad you got through it.
  23. Feisty Folder

    Good morning!!

    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
  24. Feisty Folder

    Helping with parents

    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
  25. Feisty Folder

    Helping with parents

    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