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Feisty Folder

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Feisty Folder last won the day on December 26 2016

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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  • Gender
    Female
  • Location
    Central Washington
  • Interests
    Origami, Swimming, volunteering at church
  1. So a LOT has happened since the last time I posted. My Mom was in and out of the ER a few more times. Then she spent eight days in a psychiatric unit getting her depression and anxiety back under control (which was a strange little vacation for me, I felt I could relax for the first time in months, knowing I wasn't going to be getting a call from the cops that she'd been found wandering) My mom was sent back home and six days later, on the 11th of December, my father called and said he couldn't do it anymore, that he was going to have to “institutionalize” her, and that he would rather die than live in an institution. I told him that was okay since he doesn't need to live in assisted living, but mom had been making clear for months that she was more than happy to live in assisted living. When we got off the phone he was trying to decide between a placement in Tacoma or Ellensburg (since Ellensburg is near me but he lives more than an hour away from Tacoma). An hour later, after not getting satisfactory information off the web, he called me and asked me to check out the assisted living places in Ellensburg and I got the opportunity to be an awesome daughter and tell him I'd already done so months before????. He asked me which my first choice was, I told him my choice and that after the earlier phone call I'd already been planning on calling them the next day, he asked me to go ahead and do that. And miracles of miracles the best assisted living place in town- less than a mile from my apartment- actually had an opening! And so this year for Christmas I got my mom!???? She and my dad arrived on the 18th of December- ten years to the day since I was diagnosed with Chiari- and then on the 19th she moved in to her new home. A life changing person is a way better gift than a life changing diagnosis. After seeing the place my father is actually considering living there with my mom, funnily enough a good assisted living place is not really a fate worse than death????. While we haven't yet decided what the ultimate living situation will be, what I do know is that right now my dad is back at their house in the middle of nowhere, packing up to move closer come spring????. Mom is making friends, she's eating well, she's safe, and she's happy. She's also quit calling herself stupid (I think it helps that she's not the most impaired person in her new home). Last week when she was coloring she told me “I knew this would be a good place for me, but I didn't know I'd get to have fun too!” My biggest concern was that she'd have trouble finding her way around. My mom loves frogs and there's a space outside every room for the residents to decorate. Without telling her what I was doing I put up a frog outside her room before she saw it the first time. As we walked down the hall the first time she noticed the frog, one she'd never seen before, touched it, than with complete confidence said “this must be my place” It all still doesn't feel real. I'm more surprised by this turn of events then I was by her being found wandering. And there is still alot of work to, for instance she's still on a waiting list to be taken on as new patient by a local dr, which is bit like walking a tight rope without a net. Every time I get off the phone with someone trying to move things along mom tells me “you work hard!”. The staff at her place is completely fine with how much time I spend there, but her new friends keep reassuring me “you don't have to be here so much, she'll be fine, she won't be lonely” (Yeah, but what if I get lonely?) And honestly I just love this opportunity to spend so much time with her. But I'm a little afraid to pinch myself in case this is all a dream. It's a wonderful, STRANGE transition for both of us. However, it is my birthday on Wednesday, so I guess happy birthday to me. Hope everyone else's 2017 is going as well as mine is ???? -FIESTY
  2. Sorry about the multiple posts- those darn tremors!
  3. I just needed to post this someplace where I thought someone might understand My mom's been sick for a week- her sense of time has been completely obliterated- from day one she's been saying she's been sick forever- she'll take medication then 30 seconds later say "I took meds but don't feel any better". She's been resisting eating, drinking and taking her pills- mostly out of fear of barfing again. Several times a day my dad will call me in frustration saying he can't handle the frustration any more- then put me on the phone with her and we spend an hour or more talking in circles. Yesterday went like this Mom- I don't feel good Fiesty- I know and I'm sorry but I think you'll feel better if you drink something M- but I already drank lots F- I know it feels that way but dad says you only drank one glass today M- but I drank everything and still hurt F- and I know and I'm sorry and it's not fair but you need to eat or drink something- would you rather have ice cream or juice? M- I've been a good girl and done what I'm told but I'm still sick F- I know and I'm sorry but you need to have something- would you rather have ice cream or juice? After ten minutes of this- and a few times where she was so upset with me she stopped talking for a bit- she said she'd eat ice cream if dad brought it to her- it then took me another ten minutes to talk my way onto the phone with dad to tell him she was willing to eat ice cream After all that she ate half a scoop I'm not even frustrated- I'm just sad and feeling kind of beaten- and I needed to talk to someone who might be able to understand. I'm just looking to be heard. So thanks for listening -FEISTY
  4. I just needed to post this someplace where I thought someone might understand My mom's been sick for a week- her sense of time has been completely obliterated- from day one she's been saying she's been sick forever- she'll take medication then 30 seconds later say "I took meds but don't feel any better". She's been resisting eating, drinking and taking her pills- mostly out of fear of barfing again. Several times a day my dad will call me in frustration saying he can't handle the frustration any more- then put me on the phone with her and we spend an hour or more talking in circles. Yesterday went like this Mom- I don't feel good Fiesty- I know and I'm sorry but I think you'll feel better if you drink something M- but I already drank lots F- I know it feels that way but dad says you only drank one glass today M- but I drank everything and still hurt F- and I know and I'm sorry and it's not fair but you need to eat or drink something- would you rather have ice cream or juice? M- I've been a good girl and done what I'm told but I'm still sick F- I know and I'm sorry but you need to have something- would you rather have ice cream or juice? After ten minutes of this- and a few times where she was so upset with me she stopped talking for a bit- she said she'd eat ice cream if dad brought it to her- it then took me another ten minutes to talk my way onto the phone with dad to tell him she was willing to eat ice cream After all that she ate half a scoop I'm not even frustrated- I'm just sad and feeling kind of beaten- and I needed to talk to someone who might be able to understand. I'm just looking to be heard. So thanks for listening -FEISTY
  5. I just needed to post this someplace where I thought someone might understand My mom's been sick for a week- her sense of time has been completely obliterated- from day one she's been saying she's been sick forever- she'll take medication then 30 seconds later say "I took meds but don't feel any better". She's been resisting eating, drinking and taking her pills- mostly out of fear of barfing again. Several times a day my dad will call me in frustration saying he can't handle the frustration any more- then put me on the phone with her and we spend an hour or more talking in circles. Yesterday went like this Mom- I don't feel good Fiesty- I know and I'm sorry but I think you'll feel better if you drink something M- but I already drank lots F- I know it feels that way but dad says you only drank one glass today M- but I drank everything and still hurt F- and I know and I'm sorry and it's not fair but you need to eat or drink something- would you rather have ice cream or juice? M- I've been a good girl and done what I'm told but I'm still sick F- I know and I'm sorry but you need to have something- would you rather have ice cream or juice? After ten minutes of this- and a few times where she was so upset with me she stopped talking for a bit- she said she'd eat ice cream if dad brought it to her- it then took me another ten minutes to talk my way onto the phone with dad to tell him she was willing to eat ice cream After all that she ate half a scoop I'm not even frustrated- I'm just sad and feeling kind of beaten- and I needed to talk to someone who might be able to understand. I'm just looking to be heard. So thanks for listening -FEISTY
  6. NN- It's been a looooong month, and I have an early morning because it's not quite over yet so for now all I'm going to say is- thanks- I needed to hear that -FEISTY
  7. Sometimes the body interperts headaches as nausea- I wonder if the reverse could ever happen where you think you have a headache but really you're nauseous? In that case a snack could help I suppose. Either way most people eventually find any side effects from CL fade. Also are you sure nothing else has changed? When I first went on CL I thought it was responsible for the worsening of my asthma- turns out my body didn't agree with the new generic inhaler my insurance thought was cheaper (I sure showed them with those extra 6 drs appointments it took to figure it out) Welcome to the great world of Parkinson's trade-offs!???? (Though Stump is right, protein is unlikely to make a difference at this point) Hang in there -FEISTY
  8. Peace- make the sweet potatoes however you want, life's to short to sweat about sweet potatoes. Right now life is just crazy for me- we are still trying to figure out my sleep apnea and lack of appetite- though at least I didn't lose weight this week. Instead this week consisted of one futile DR's appointment, one constructive drs appointment and my mom spending two nights in the hospital with what turned out to be a bladder infection. I seriously doubt I'm going to see my parents on Thanksgiving, I feel so selfish saying that but it's true- I'm sad that my mom's illness might keep me from seeing her (I'm also sad she's sick of course). At least my best friend will still have me over and bake me cresent rolls. Hope everyone else has a happy Thanksgiving -FEISTY
  9. Are you me????? I love your sense of humor (you can find your name tag at the top of your post btw????) I'm sorry you have PD but glad you found your way here. I just got back from a 9 hour trip to my neurologist so for now I'll just say welcome- make yourself at home- even kick off your shoes if you'd like (but please keep on your name tag- I'm terrible with names????) Hang in there -FEISTY
  10. Mizzkrizz- I'm sorry for the struggles you are having with your health. To compound that with drs who shrug there shoulders or brush you off just makes things even more frustrating. I hope things improve for you soon. I'm not a dr, nor do I play one on the internet but I will say your symptoms sound identical to my early ones just slightly out of order. I was first diagnosed with migraines by a dr who only had a negative MRI as a test result, she was so sure she was right that after prescribing migraine meds she told me to return in 4 months. I now see a different neurologist. My mom was a dr and you should have heard the rants she had about drs just out of residency. When I was younger the rants were about how new drs have huge egos and just enough knowledge to be dangerous, in the past decade she added to those rants that because theses young drs had been raised texting and e-mailing they didn't know how to hold an actual conversation or possess any bedside manner- it's a scary combo. Were I in your shoes I'd definitely consider getting a second opinion. Hang in there -FEISTY PS- the most recent issue of neurology now has a great article on "self diagnosis"- or more accurately researching and advocating for yourself in the face of an unidentified illness - https://patients.aan.com/resources/neurologynow/index.cfm?event=home.showArticle&id=ovid%2Ecom%3A%2Fbib%2Fovftdb%2F01222928%2D201612050%2D00017
  11. A close friend of mine, one of my local "dad's" buried his father yesterday. It's made it easier to keep this whole election nonsense in perspective. On the other hand- I've lost a lot of weight the past several years- anyone who needs medium or large size long johns is more then welcome to have my spares when we all arrive at JBs ????
  12. Kristakj78- I'm so sorry for what you're going through right now. My Sinemet has also started losing some of its effectiveness recently, and it's definitely a scary feeling to think you're on top of things then have the rug pulled out from under you. And then to have all of those family issues as well! I'm sorry you're struggling. I take doxepin- technically I take it to help me sleep, but I was taken off it during the diagnostic process for my PD and underneath the doxepin I am definitely depressed- I've been on doxepin for 9 years so who knows how long it may have been masking that particular symptom. I hope you find some good support and a break from your family drama soon. I'm saying a prayer for you right now. Hang in there -FEISTY
  13. Those are great suggestions Linda- particularly explaining how the root cause usually is so different With PD. Like I said the suggestions are coming from acquaintances- my close friends have become educated about PD- MOSTLY by choice????
  14. I've been having a lot of well intentioned "have you tried..." conversations with acquaintances recently. They seemed confused why I don't seem more excited about expensive, unproven therapies, not covered by insurance, that were successful in a friend of a friend who doesn't even have PD. I sort of get why they make the suggestion- emphasis on sort of- but I don't get why they continue to press when it's made clear I'm not interested. How does everyone else handle these conversations? And what was the most entertaining suggestions? (For me the most entertaining was the one about aromatherapy for my asthma that's triggered by particulates in the air)
  15. I found a 3 year old new York times article discussing the sorts of problems you're facing when it comes to restrictive hospice requirements http://mobile.nytimes.com/blogs/newoldage/2013/01/03/hospice-obstacles/?referer= The article mentions a program offered by some hospices called "expanded care" or "concurrent care", hopefully those terms will assist you in your search. The article also mentions how the hospice system needs overhauling, since the line between palliative care and treatment has become so blurred (your husbands meds are clearly a quality of life issue though). Getting rid of restrictive hospice rules seems like an excellent thing to write your Congress person about. Since CG are so busy it seems like a good project for us PWP who are still in early stages to take on. If I were to write my Congress person would it be alright with you for me to summarize your situation? I hope you find the help you need soon. Hang in there -FEISTY