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Superdecooper last won the day on February 18

Superdecooper had the most liked content!

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About Superdecooper

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  • Birthday August 30

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    music, writing, sci-fi, reading, swimming, movies.
    Feel free to contact me at scoop1200@yahoo.com

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  1. Bipolar and parkinsons

    What a coincidence. A very good friend of mine who is helping me adjust to PD just sent me a link to her own struggle with being bipolar.. She's a fellow journalist who also works on Capitol Hill ... http://www.nytimes.com/2012/01/18/opinion/my-so-called-bipolar-life.html
  2. Apathy

    Interesting read. without a doubt, I'm definitely dealing with this. Uggh. Make it stop! -S
  3. Welcome to the club

    Hi CLDM and Oto My MDS is super conservative and wants me to stay on Azilect for another 12 weeks to see if the meds will get to full strength and help with some of the other symptoms - other than sleep disturbances, which is what Azilect seems to be helping most with right now. I'm not convinced and I'm going to talk with him again this week to re-evaluate that plan. I'm sleeping about 6 hours on average, unless I go to bed stressed about something or worried, then I get the 3 am wake up routine. I can fall back asleep after a while. Wouldn't it be wonderful to sleep 8 hours again? I'm finding that tremors respond to my emotional state. I admit to being frustrated many mornings when I come to bed later than my wife and wake up earlier than her and she has slept all night long with no problems. But she's worried about me so I don't bother her with my sleep jealousy. Does anyone else have sleep jealousy or is it just me? (I should trademark that phrase!) I am a little less stiff now than I was in December, but I'm still dealing with feeling undermedicated. The swimming seems to be helping with the stiffness and I hope to add in some more consistent and routine stretching in my day. Ive never taken Madopar, but CLDM you make it sound both helpful and tedious to take. I wonder when Azilect wears off, or does it. I'm sure I don't have on and off periods since I'm not taking much meds right now. However, I have the most problems early in the morning and early in the evening. Im coming to grips with my health. I hope. At least for now. I do wonder what would happen if I stopped taking Azilect. I wonder if my body is getting accustomed to the boost in dopamine from that medicine and would get worse without it. I'm dealing with the thought of having to take PD drugs for the rest of my life. That's sort of difficult for me. I take blood pressure meds now, but as my weight is dropping my pressure is going down and I might get off them. I wonder if there's something I could do to make my dopamine act right and then get off of Azilect and not have to take any new PD drugs either. I guess these thoughts are what people refer to as bargaining. still trying to deal with this. -S
  4. Welcome to the club

    So, I'm dealing with a mild case of swimmer's ear right now. That just an outer ear infection. Last week the pool filter broke and the gym replaced it on the fly without really closing the pool down or changing out the water quickly enough. This too shall pass. Doc says take ear drops, get some ear plugs, should be gone in about 10 days. I can still swim though. Which is good cause I signed up for swimming lessons at the local community center. I'm trying to learn the breaststroke, the backstroke and the flip turn. On the PD front, I've been waking up with a tremor some mornings - not every day, but often enough. And the occupational therapy for the dystonia in my hand seems to be helping with the pain some and grip strength. I'm supposed to get a physical therapy evaluation next week - I've got some mild freezing going on so I'm trying to pick up a few tricks on how to get up quickly and how to walk a bit more smoothly. I'm also getting some work on knowing where my hands and are placed - hopefully that will cut down on the knocking things over. -S
  5. Do any of you here sleep - I get little or none

    Hey AV, I've really upped my exercise game since December. I'm up to swimming a mile each evening. (The pool is about 3 minutes from my house so it's easy to get in and out.) I also started taking Azilect in late December. Those two things seem to have gotten me up to 6 hours of sleep each night without the night sweats and vivid dreaming and kicking in my sleep. I also use a CPAP machine for sleep apnea and I also take 10 mg of melatonin. I still get some of the insomnia issues but it's been pretty mellow. I'm so grateful for small improvements. I know how terrible it is to go to bed at 1130 pm, wake up at 230 am stay away until 5 am and then sleep to 7:15 am. I did that for most of 2017. The dreams were the worst part and a couple of times I woke up frozen and couldnt move - terrified. For a while I tried to go to bed later and later, around 12 midnight, 1 am and then hoped to wake up at 6 or 7, but that never worked. Still, I'm not completely fixed, but it's better. Generally, my wife sleeps way more soundly than I do. Usually she goes to bed before me by about 30 minutes or so and sleeps straight through until about an hour after I get up.... I admit I'm just a little bit jealous. Hang in there. -S
  6. http://wapo.st/2Igc8sb?tid=ss_mail&utm_term=.5c0026cec7f1 The other opioid crisis: pain patients who can’t access the medicine we need Changing guidelines for prescriptions have left people like me without care. (Sue Ogrocki/AP) By Anne Fuqua March 9 Anne Fuqua is a former nurse living in Birmingham, Ala. When you hear the words “opioid crisis,” you probably think about tragic deaths from addiction. But there is another opioid crisis, one I know well: the inability of pain patients to access the medication they need to function. I was diagnosed with primary generalized dystonia in my late teens. It’s a neurological disorder that causes involuntary movements and painful muscle spasms. I was unable to tolerate most of the medications used to treat Parkinson’s disease, which are commonly used against dystonia. The ones I could tolerate didn’t help. But for reasons doctors don’t fully understand, opioids have a dramatic effect on my symptoms. My body is not nearly as rigid and jerky. The spasms that pulled my body to the side, making it difficult to sit up straight, are gone. My fingers are no longer clenched. But my situation has gotten more complicated. At first it was small things. In 2014, my doctor started requiring more frequent appointments to keep writing my prescriptions. I didn’t mind. Next, my doctor decided to no longer participate in my insurance. It cost me $150 out of pocket for each visit, but it was worth it to be able to continue the life I had worked so hard to build. In 2015, the state of Alabama began sending mandatory prescription monitoring reports to physicians who prescribed patients high doses of opioids, along with a form letter encouraging doctors to carefully consider whether their patients should be receiving this dose. My doctor, who had treated me for nine years, was apologetic. I could see the sadness in his expression as he explained that he would need to reduce my dose. That first reduction was small, and I tolerated it easily. The second reduction, however, brought the return of pain and several of my dystonia symptoms, problems I had not dealt with in years. My doctor was distressed, and he decided to put me back on my original dosage. My relief was short-lived. A few months later, my doctor chose to leave pain management. He told me he could no longer stand the paperwork and stress involved with being a pain specialist and trying to decide between protecting his ability to provide for his family and protecting his patients. What followed was the hardest time of my entire life. I had to taper my medication while searching for a new doctor. I became completely debilitated and could barely manage on my own. Pain and spasms feed on each other, creating a vicious cycle. Moving from one chair to another was once again a very difficult task. I could no longer drive the van I had worked to purchase. I had my records sent to many doctors across Alabama. Some of my contacts in the medical community reached out to doctors on my behalf. No one was even willing to evaluate me. When the Centers for Disease Control and Prevention introduced guidelines for opioid prescribing in 2016, doctors began treating pain patients differently. It didn’t matter if a patient had been stable and benefitting from medication for many years. Doctors pulled back. I was able to find a doctor out of state who was willing to treat me, but many patients have not been so lucky. In 2014, I started keeping a list of pain patients who had committed suicide, unable to cope with the pain. Sometimes the list grows weekly, sometimes daily. I knew some of these people personally; some names were submitted to me by their loved ones. Others were mentioned in the comment sections of articles or posted on Facebook. Sometimes it’s not even a full name. My list has more than 100 entries. Children have lost mothers, fathers and grandparents. I have lost friends. Just a few years ago, discussion of suicide was rare in the community of pain patients. Now I see it on online bulletin boards, in article comments and in online groups dedicated to the subject. That’s my opioid crisis. As a former nurse, I never dreamed that our government would encroach to this degree on the relationship patients have with their medical providers. Twenty years ago, when I was attending nursing school, the Joint Commission, a healthcare accreditation board, introduced the “fifth vital sign,” which required health-care providers to ask patients whether they had pain and how severe it was as part of the routine assessment of vital signs. Now we’ve done an about-face because of opioid abuse to implement policies that will cause physicians to abandon patients or taper medications regardless of whether this will harm their quality of life. I would love to return to working as a nurse, though I can’t imagine doing it now. I used to work for a hospice service. I don’t want to tell a patient writhing in pain at 4 a.m. that he will have to find a way to cope because prescribing policy changes now affect patients with cancer and those who’ve just had surgery. My opioid crisis is wondering whether each time I fill my medications will be the last time. I wonder how much longer I’ll be able to do the things I enjoy. I’m 38 years old. There’s so much that I want to do with my life. I want to go back to work part time, but I’m afraid to, because my future is so uncertain. I feel like I’m on death row. There are multiple opioid crises in America. The crisis of people in the throes of addiction deserves the time, attention and talents of health-care providers and legislators. But the crisis of people in pain deserves the same.
  7. Rasagiline and other drugs

    Unfortunately, I am too fortunate to qualify for the Tafcares program for reduced cost Azilect. Income too high, but I just hit my $3000 yearly health insurance deductible yesterday so I will only have a $25 copay for a 3 month supply.
  8. Welcome to the club

    Just found out what freezing is. I was at the occupational therapist and she had me doing some exercise with holding paper and moving it in a pattern. Every time my hands reached a certain point in the exercise they just came to a complete halt. She called over PD specific physical therapist who explained what freezing is and told me to try it again where I could see the wall as the end point. Voila no more freezing in the middle of a movement. Ive also been having some problems quickly getting up from a seated position. She said to move my head forward over my knees a little to get the process started. This happens to me a lot in church and I’ve been sort of not wanting to go since it’s pretty obvious to me at least that I’m still trying to stand up when others are already on their feet We also talked about a couple of times when I tripped on the stairs last week. She said I may have to start paying just a bit more attention to the placement of my feet especially when I’m tired or stressed. I’m having some problem with knowing where my feet and hand are in reference to other objects in space. Proprioception is what she called it. Not that big of a deal for me cause it happens at random times. -S
  9. Welcome to the club

    Hey Benderet, Thanks for the post. I found it very, very helpful. I'm taking a higher dose of melatonin than you. I'm getting about 6 hours of sleep each night, sometimes 7, if I'm lucky. But insomnia, night sweats, vivid dreams are some of the symptoms that Azilect seems to be moderating. Less sweating, less waiting up in the middle of the night, and less frequent crazy dreams - not gone, but better. I'm having some impulse control issues with Azilect, unfortunately. Last week, on a whim, I went shopping for new clothes and bought three pair of jeans - that's unusual for me since I rarely by clothes and definitely not that many at one time --- but, OMG - I was so, so very happy and excited when I left the store. It was like christmas morning! I still haven't decided whether to take them back. I did ask my MDS to give me a trial of Sinemet, but he declined saying he thought the side effects would make it not worth it and gave me the prescription for Azilect, which I've been on since the first of the year. It's having absolutely no impact on the dystonia in my right dominant hand, or the mild tremors, or the shoulder and hamstring stiffness. In what may be pure coincidence, I fell down a few stairs last week -- i was looking at my ipad and not paying attention. I caught myself in time not to do any permanent damage. I blamed it on concentrating on my ipad, until I tripped down the stairs a second time later that evening. Now I'm paying attention to walking. I see the MDS again next week. I'm not interested in getting Botox injections in my hand - I'm just not a fan of botulism toxin, sorry. He may offer me an agonist, but I feel like a low dose of C/L would probably be more beneficial. Finally, I'm not young enough to be considered YOPD, I guess. I'm in the latter half of my 50s, but I think that might be young for PD symptoms. Plus, I look like I'm about 35 maybe. The MDS even told me that I look too young and i have so much of my life ahead of me, that he didn't want to stick me with a diagnosis of PD, then he went on to start the very same treatment plan just like everyone else who has PD. Let's just call it a dopamine deficiency, with very early signs of what looks like it could be PD, he says. This conflicted diagnoses comes despite a positive Datscan, and his clinical exam showing reduced arm swing and bradykinesia - (I know this because I got a copy of my medical records from his office.) Some of the symptoms could be partially in your head, others could be side effects of other medicine, he told me while also saying he was surprised when the Datscan didn't show I had essential tremor, which is what he was hoping was wrong with me. Whatever. I really am less concerned about the label as I am with the treatment. I need my right hand to stop jumping around and work properly and my brain to stop getting side-tracked by apathy, my shoulder and legs to stop hurting, and my sleep to flatten out to 8 hours. Right now, I'm okay with the meds I'm taking to treat my ED, sleep apnea, vitamin D deficiency. I'm ignoring my diminished sense of smell and my inability to quickly find the right words to say. I'm getting a second opinion in June. In the meantime, I will find a way or make one... -S
  10. Doctor says symptoms 'consistent with' PD

    Welcome to the club, Paul You can check out at anytime, you just can't leave! Like you, I just started on Azilect recently. I'm hoping for the best and exercising every day to stay as lose and limber as possible and to keep my brain healthy. So far, I haven't adjusted my diet as much as I'd like, but that's coming. And I'm becoming more patient with myself... so what if I keep dropping stuff and knocking things over ... I'm trying to make peace with who I am and what I can do now and not dwell on how some of the simple things I used to do without thinking are now more difficult. Feel free to ask questions.. I've found that somebody on this forum will have already had the experience and can offer guidance. That's comforting, especially when frustration kicks in. -S
  11. Dropping Things

    Still dropping things and overshooting objects I reach for. Just knocked over someone else’s cup of coffee at work into the carpet. Bother -S
  12. Help With A Symptom

    Hey Bill, i really hope you get the answer to this question so you can share it with the rest of us. Im having shoulder pain that comes and goes as well as stiffness in my hamstrings and legs. I think I’m probably under medicated. However I can tell you from my past experiences with several rotator cuff tears and bursitis in my acromion, this is a different type of pain and Also different in intensity. My current shoulder joint pain is not responsive to opiates, but in the past it was when I had torn it. This current shoulder pain is partially sensitive to baclofen muscle relaxer, which I’m taking for dystonia in my right hand. In the past, the shoulder pain was a constant throbbing pain and I couldn’t sleep or raise my hand. The current pain is inconsistent and is having less impact on mobility. My guess would be that what you have going on is not related totally to bursitis only but could be some wear and tear combined with PD but im no expert I hope this helps. -S
  13. Q About Arm Swing

    what's the answer to this BillBRNC?
  14. Loss of Smell?

    Hey gang, Another question.. did any of you get your sense of smell back after taking C/L for a while? I just wondered if that's something I could hope for or not. I posted earlier that my wife was complaining that I never smelled the garbage in the garage - this must have been around 2016 summer. So I put an air freshener in the garage so she wouldn't be able to smell it either..problem solved, not!. She also complained that I missed the smell of decaying animals when we were driving (why is that a problem!) Also, thinking back I realize that I stopped smelling fresh cut grass in the later summer of 2015 or maybe spring 2016. I remember coming home from work and being surprised the grass was cut and hearing the lawn mower going..I thought at the time that grass must not smell like it used to when i was a kid because of global warming or the lack of rain. Definitely not because of some brain disorder. I always loved fresh cut grass because they reminded me of playing football as a kid and picnics. I can still smell bananas and coffee when I'm close to them, so my smell isn't completely gone. But, i was just wondering if your sense of smell comes back?
  15. Rasagiline and other drugs

    adams234, you're still taking azilect, how come? I thought folks took that med for a while then moved on. Can you tell if it is working for you? or are you afraid to stop taking it because it might make things worse?