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ncrocker

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ncrocker last won the day on November 4 2016

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About ncrocker

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  1. Big News?

    Just got an email about a breakthrough in Parkinson's described here: http://flip.it/-WivkW. It is entitled Parkinson's breakthrough: New disease-causing mechanism found. Anyone know what this means and if it really may be important? Thanks.
  2. dyskinesia free l-dopa

    I am beginning to experience dyskinesia and it is freaking me out.
  3. New Gut Research

    Hi! There is some new and exciting research out about the relationship of the gut and Parkinson's Disease. (December 2016) While we are waiting for research to turn into treatment, I am wondering if anyone knows anything about how to improve our guts! I guess that would address things like probiotics and diet. Anybody have anything to share?
  4. Humor

    Oh you are a funny one Natasha! I'll have to read this forum more frequently!
  5. Humor

    I wish I was related to Betty Crocker! Then I would have a wealthy relative! Then again, I don't think she actually exists! Oh well, I'm not always sure I exist! You've got my last name right now although I kind of prefer Rocker! Maybe my name could be No Carbon Rocker and I could travel the world in electric vehicles and play music that inspires everyone to reduce their carbon footprint! That could be the basis of a fun comic book series: "Rockers with Parkinson's save the world while awaiting the creation of better meds!" If you can draw, I'll write the story!
  6. Humor

    I am glad you enjoyed it. I'm not a professional writer! Thanks for the compliment. I'm not from North Carolina, but I like the way you interpreted my username.
  7. Humor

    It was a gentleman.
  8. Sinemet first, now adding Requip---anybody on that combo?

    I am glad Requip worked for you. I did not have good luck Requip. It didn't work for me and literally made me vomit! I couldn't sleep and was miserable. Good luck with DBS!
  9. Humor

    We miss you, too!
  10. Humor

    Parkinson’s Comedy Sometimes it’s hard to tell what’s funny and what’s not. Like, having Parkinson’s disease. It really is not funny at all to have a degenerative, progressive neurological disease. Then, again, there are funny moments. It’s funny when language gets turned on its head. Like, the term “progressive.” Generally that’s a good term. “Progressing” is a good thing. You are progressing at school or in skills you are proud of. But in Parkinson’s, “progressing” is just the opposite. “Progressing” means your Parkinson’s is going merrily, quickly along its own trajectory: one that aims at leaving you comatose, drooling, unable to speak or walk, in a wheelchair. So, “progress” is something I try to avoid and the mention of it makes me a little squeamish. And, my poor husband. Or, rather, he used to be my husband. Now he’s my “caregiver.” Poor thing! We went to a conference on Parkinson’s in order to educate ourselves about things like “progress.” I went to a Parkinson’s and nutrition workshop. He went to a caregiver workshop. When we met afterward I was excited about the new recipes I wanted to try, but he seemed a little shaken. Then I decided to be a good citizen and participate in a clinical trial. Well, my “caregiver,” had a piece in it, too. He got a survey with questions like, “What is your preferred method of mopping up your person-living-with-Parkinson’s drool? Paper towel or something else?” “Do you bathe and dress your person-living-with-Parkinson’s?” seemed to be another pertinent question. Were those researchers getting naughty with us? It was a gauge of how quickly things can change that apparently no one else thought that question might have sexual undertones! And there is another word puzzle: what do you call someone who has Parkinson’s? A Parkinson’s patient? Parkinsonian? Oh, no, we are “people-living-with-Parkinson’s” or, affectionately, “Parkies.” And, then there are the fun cards you sometimes get from Foundations: cards that say: “I’m not drunk, I have Parkinson’s!” Isn’t that cute! If you get stopped by the police for driving too slowly – a Parkinson’s classic – you just give them your “not drunk” card and everything is good! Can’t walk a straight line? Your finger can’t find your nose? Shaking like a leaf? It’s all Parkinson’s! There’s even a cute song you could sing for the officer – if you can still sing – called “Blame it on the Parkinson’s!” But one of the most hotly debated issues is the dreaded “outing” conversation! Gay people and straight people living with Parkinson’s have something in common: how do you tell non-Parkies that you have Parkinson’s? I entirely avoided it for the first three years. The few people who knew about my progressive disease were sworn to silence! Then, I decided to “out” myself. But how? Telling co-workers is especially tricky. I tried writing on a post it note: “I have Parkinson’s disease,” handing it to a co-worker and leaving the building. I guess that doesn’t count as a conversation. It’s tempting to say to a co-worker, “ I have Parkinson’s disease. The symptoms are not limited to motor problems, like tremors, but are why I seem to be stupid. My memory is shot because every night someone breaks into my skull and exchanges my brain for cotton balls. So, if I ask you ten times how to do some simple computer task, just “Blame it on the Parkinson’s.” And, when I told my supervisor that I had Parkinson’s, her response was, in addition to handing me a Separation agreement, that “she was relieved,” because that explained my poor performance. I’m so glad I made her feel better. And, then there’s the whole emotionally confusing business of becoming officially “disabled.” Should I be laughing all the way to the bank or joining Robin Williams? For me, the upside of having Parkinson’s has been the opportunity to get to know so many really fabulous people who happen to have Parkinson’s. It’s a diverse community of individuals with often pretty much nothing else in common. We would have never met each other except for the accident of being dopamine zombies clinging to one another as we face a future of unwelcome surprises. I love each person. I am part of a Parkinson’s table tennis group! We meet twice a month and play table tennis. It’s really fun! Some of the players are so wonderfully “progressed” that we have to help them to the table and stand them up with a paddle in their hands. Amazingly, they are great table tennis players! People with Parkinson’s – especially those outstandingly progressed ones! – have what is called “masking.” That means that their facial expressions don’t change. They are the perfect poker faces! It’s great to see someone who can barely walk play ping pong without any facial expression and knock the socks off of someone who is not-living-with-Parkinson’s! I also enjoy my Parkinson’s dance group. I love dancing beside someone with a walker who can’t speak, but makes it clear to his “caregiver,” that he is not going to sit this dance out! And, I love my straight talking Parkinson’s buddies who came up to me at a day time educational meeting and said, “This is the second time we have seen you at something during the work day! Did you lose your job?” People living with Parkinson’s don’t have time to beat around the bush! And, when I lost my job, I was so happy to realize that I didn’t have to feel embarrassed or ashamed because my Parkinson’s buddies understood. I was still a person with value who they were happy to see. I could help them to be happy whether or not they were “progressing” or getting fired or dancing with their walkers. Our identities are all under assault as are the identities of our “caregivers.” What makes my Parkinson’s tolerable are my “caregivers” and my fellow people-living-with-Parkinson’s. Thank you! My Parkinson’s has allowed me to see how beautiful you are.
  11. Humor

    The Office Visit I saw my Doc today. I had prepared what I wanted to tell him. “Doc,” I said, “This Parkinson’s thing has been very interesting, but I think I’ve learned from it all it has to teach me and I’m ready to move on. I’ve met a lot of interesting people and increased my vocabulary. I’ve tried a lot of drugs and it’s been good! Nevertheless, I’m ready to move on to other things. So, just sign me out, I’ll see you around!” Well, he just laughed. “Doc,” I said, “then just give me the really good pill! You know, the one that really works! Why are you withholding the really good pill from me? Give me the really good pill!” Well, he just laughed and said, “Let’s get real.” I’ll try again next time. My doctor sometimes uses words I am not familiar with such as “titrate.” We titrate this; we titrate that. I had no idea what he was talking about! I guess I could have asked, but I was trying to play long and be a good sport in hopes of getting that magic pill. I finally figured it out. To titrate simply means that you gradually increase your medication until it is just right. Just as I figured that out, our vocabulary lesson was over and it was time for math. While Doc was calculating my latest titration program, he called out a math problem like he needed help with the titration calculations, “What’s 24 times 7 plus 83?” There was no one else in the room, but why was he asking me? Did another patient steal his calculator? I remembered giving my son mental math problems to keep him busy while we were on long car trips. That worked until he decided it was my turn! I could dish it out, but could I take it? I thought about responding to the Doc by asking him, “What’s 3,215 times 16 minus 45?” I hesitated as I considered that maybe there really was a magic pill and he was just trying to see if I was ready for it. This line of thought led me to a revelation! Doc was just sneaking in a cognitive test! Silly person-living-with Parkinson’s! Last time I saw the Doc, I told him that I was gaining weight. He had told me that one of my meds was linked to weight gain, and took me off that med. I lost 9 pounds in a month! That was good, but now I had tremors and felt bad. After Doc completed his titration calculations, he went over my new regimen of meds. Doxycycline once a day in the morning before eating. That is for my skin. I now get acne without the benefit of being a teenager. Take the new med, Requip, three times a day. It is also known as something else. Everything has two names. That makes it simpler! The pharmacist said I should take it at night because it can make me drowsy, but my doc said take it three times a day, so that doesn't sound like at night. I was to take one tab of the lowest dose three times a day for a one week, then two tabs for another week, then I take three tabs a day for another week, then I switch to a higher dose tab for another week, and for the next three weeks something else that I can't even think about yet until I reach a stable dose at the end of two months. Okay. I also take two tabs of Carbidopa/levadopa, also known as sinemet, four times a day forever or randomly as I prefer. And, at night I take one tab of - oh, boy – Aricept! In case you don't know, that is a drug taken by people with memory problems. Now, if I really had memory problems, how would I figure out this drug regimen and stick to it? Especially with one med three times a day and another four times a day? Oh, did I mention that I can't eat protein one hour before or two hours after the sinemet/carbidopa/levadopa? Or maybe it is two hours before and one hour after. I can't do anything but pay attention to this drug regimen! The only thing worse than this is the thought of what life would be like without these drugs. Bon appétit! I have found Moscow mules (vodka, lime and ginger beer) to be much better than water for washing down drugs (any sort!) after 5:00 p.m. Repeat as needed. Let's see, I think it is time for 1 sinemet, 1 Requip, 1 aricept and at least one Moscow mule. And it is Wednesday, so that means I’ll watch Nature and Nova on TV unless my husband wants to watch loud, action TV that makes it sound like we live in a war zone! I can't imagine how I worked until recently! Since life with Parkinson’s gives me so much material, I am considering stand up comedy as a future career. Should I tell my long term disability guy that? Why not! Maybe I will just read him this when he asks if I would like to talk with a vocational counselor! Laugh or cry? You choose!
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