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Feisty Folder

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Feisty Folder last won the day on April 28 2017

Feisty Folder had the most liked content!

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About Feisty Folder

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    Advanced Member
  • Birthday January 11

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    Central Washington
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    Origami, Swimming, volunteering at church

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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