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saguaro last won the day on September 26 2016

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About saguaro

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  1. Hi, I disappeared, then, when I reappeared, my whole name was on display. Well, millennials aren't know for being privacy conscious on the internet, anyway. A quick update, I don't have PD. I visited an MDS nearby, and he thought based on my DATscan and how I moved, it's not likely I have PD. My neck dystonia never cleared up, but it seemed to do better with more c/l. We tested for DRD, but no genetic link. I don't quite fit the DRD mold, to be honest; I have motor fluctuations, and incomplete response to c/l, and i take way more c/l than a typical DRD person would take (1,400 mg a day, plus an agonist). Dystonia everywhere now, but I'm slowly learning to manage. I live this weird paradox where I can swim pretty hard, sprint repeats and such, for about an hour, but can't drive my car more than 30 minutes. It's weird. I'm cutting back on the swimming intensity (i'm not very fast, by the way). I'm slowly learning that I can does not equal I should. Or, at least, that's what my shoulders tell me
  2. saguaro

    Dystonia Question

    Thank you for your insight, Dr. Okun, I have found it very helpful. I'll talk to my docotr about increasing my c/l dose at my next appointment. Do you have any general/practical advice you would give specifically to a younger person a few months into a PD diagnosis? And again,thank you.
  3. saguaro


    Thank you for the wonderful response, christie. My neurologist explained to me early on that though there was new research linking dyskinesia and dystonia to disease progression instead of long term c/l use, he felt more conservative about the issue. Given my age, he worried about how he my might extend the amount of time c/l will cover my symptoms without side effects. The plan was to add an agonist so we could reduce the amount of c/l I'm taking. He thought I could try not taking c/l on weekends. He did say if I didn't like it, we could just stick with c/l. Looks like I'm sticking to c/l. Is it common for off-dystonia to stick around even after levodopa is reintroduced? Perhaps the plan backfired, and now I'll need more c/l.
  4. saguaro


    I posted a few days ago in the Young Onset forum that after a weekend without levodopa (my neurologist suggested this) that I was experiencing cervical dystonia. My neurologist switched me from taking C/L 50-200 2x a day to taking C/L 25-100 4x a day, hoping the fast acting dose would provide better relief. I initially thought I was starting to feel better, but I think it just took a few days for the dystonia to settle in. Besides C/L, I'm taking 1mg of pramipexole 3x a day and 1 mg of azilect. From what I've been reading online, I would describe my cervical dystonia as sustained antecollis. It's there when I wake up, and my chin is tucked very neatly into my chest. I noticed on saturday that when I try to pick up my head, it starts shaking. A head tremor would be a very new symptom for me. And one other oddity is that after a massage on friday (i never get massages, but needed to try something) I felt just fine for about an hour and a half. I suspect that the stopping levodopa cold was a shock to my system and brought on a new dystonia. But I can't figure out why it's sustained, or why starting levodopa again hasn't helped. Something else I've read is there is a connection between pramipexole and antecollis. But there only seems to be three case studies cited over and over that seem to indicate antecollis as a side effect of pramipexole. Each of these studies examine one person, and in each case the person is close to 70 give or take. I wonder if age is a factor to take into consideration, as I thought DA's were used mainly with younger patients. Pramipexole could be a factor in my case, but what to make of my symptoms appearing after almost 48 hours w/out levodopa? I have an appointment with my neurologist in a few day, so hopefully he'll have some insight and some treatment ideas. does anyone else have any ideas or insights? I've confused myself. (Also, I've read that antecollis in parkinson's could indicate Multiple System Atrophy. But I have a super tremor, and tremor is uncommon in MSA. But this could be a possible worst case scenario, I suppose)
  5. saguaro

    Dystonia Question

    Dear Dr. Okun, first off, thank you for everything you do for the PD community and these forums. I have a question about cervical dystonia that set in after a weekend without my usual C/L dose. Because of my age, 27, my neurologist and I wanted to see if we could reduce my C/L dosage in hopes of extending the amount of time that it could be used for my symptoms without any side effects. I began taking pramipexole a couple of months ago and titrated up to 1mg 3x a day. Before stopping C/L for the weekend, I was taking 200mg of extended release C/L 2x a day, 1 mg of Azilect 1x a day, and the 1 mg of pramipexole 3x a day. My doctor suggested that I try going without C/L on weekends. This past weekend, I took my last dose of C/L on Friday morning, intending to wait until Sunday evening to take another dose. Sunday morning I could feel my neck begin to get a little stiff, but I didn't worry too much about it. By that evening, my neck was very stiff and my head kept drifting down towards my chest. I took my C/L that night, and returned to my regular dosage of all my meds on Monday morning. Unfortunately, my neck did not improve any and began to feel pretty bad. After talking to my doctor, I switched to 1 tab of 25-100 C/L taken 4x a day in hopes the quick acting dose would provide more relief. I've been taking 25-100 C/L for 2 day (and have been back on C/L for a total of 4 days) and have only seen mild relief. Most of the day my neck is stiff and my head finds its resting position tilted forward towards my chest. I should add that this is a completely new symptom for me. Is it possible that neck dystonia is here to stay for me as a regular symptom, or could it just take a while for me to return to normal? It seems that cervical dystonia is not common with PD, is it possible that this was a symptom that was going to show up anyway, or is it probably a result of stopping C/L? Thank you, -saguaro
  6. saguaro

    So, the dystonia thing is legit

    Hi, Didi, sorry to hear about your husbands troubles. I'm 27 and was Dx in late April of this year. This has been my first real experience with dystonia. I have some dystonia in my right leg, but it's pretty mild--just feels awkward to walk on and a little painful if I try to run on it. That has been mostly controlled by my meds. When my cervical dystonia is at its worst, I feel pretty light headed and nauseous. Short acting c/l, instead of the long acting I normally take, seems to help with my dystonia quite a bit more. Beau's Mom, this really caught me off guard, and scared me quite a bit to be honest. I'm seeing a neurologist right now who is quite excellent and has spent a lot of time explaining treatment options to me and just listening to me (well, when I talk. I'm still struggling with keeping up with my side of being a good patient. all in good time, one hopes). We made the switch to short acting c/l and that has helped. At least now we know I definitely need at least some levodopa. I'm glad to be on the mend, it seems. A little stiff, but the pain is largely gone, and I can keep my head up. I took today off work, so I'm going to try to spend the day stretching my neck and getting in some short walks. I do wonder if this will be a new PD companion, or just a passing visitor. Either way, onward, I guess -saguaro
  7. I mean, I knew, but still . . . At my last appointment, my near suggested I try not taking any levodopa on weekends. A few months ago, we added an agonist to both help control my tremor and mild leg dystonia and hopefully allow us to reduce me c/l dose. So, no c/l this weekend. It was okay at first, but then something new! . . . neck dystonia, I'm pretty sure is cervical dystonia. My neck is super stiff, my chin keeps drifting towards my chest, and by 3 or 4 in the afternoon I feel like someone set a house on my neck. I took some c/l early sunday evening, when it first showed up, and have been back on my regular schedule since monday morning--hasn't helped much. I called to see if my neuro. could see me sometime soon or suggest something more that I can do. I'm nervous about just adding in more c/l since I'm on extended release c/l. So, dystonia-1 Saguaro-0 for now
  8. saguaro

    Some Pedestrian Newbie Questions

    Sorry for the belated thank you. I was off doing zombie-ish student things. This is some great advice. It got clod, then warm, then cold, now its mild, so whatever allergies were bothering me have since past. I'll be sure to ask my near. what she wants me to do when things like allergies come up when I see her next week.
  9. saguaro

    Diagnosed with Parkinsonism.

    Trev, as someone recently diagnosed, my heart goes out to you. I'm 27 and was diagnosed with PD a little over a month ago. This forum is a great place for advice (this thread is proof). Since high school, I've been an avid runner, at one point getting up to 45-50 miles a week. In the past few weeks I've had to settle down some with my running--like you my right leg likes to give me a bit of trouble. I've been a bit bummed about not being able to run as much, but I've been trying to think of it as an opportunity to try other things. I've recently started taekwondo, which has been fun, and I have been taking more walks with my dogs in the woods by my apartment. In my limited, very early, experience with PD, I've found that the best way to approach my diagnosis is as an opportunity to explore and reimagine. I plan on swimming more (maybe once this semester is over) and doing more yoga. For me, especially in the weeks before the diagnosis, it's really easy to go into toxic thought world. So easy to imagine the worst case scenario. So easy to read about PD symptoms and diagnose myself with each one (this one is hard for me not to do). But, just because I imagine it, it doesn't make any of the terrible things that could happen my reality. Life will always do the sort of things life does. Do not lose heart. Even before PD, nothing in life was guaranteed. PD is more of a hurdle than a blockade, and hurdles are nothing new to life. Medicine has really helped me. I have the tremor from hell, but it's pretty much under control with meds. I also have a nice claw. I tried carrying a stress ball for a while, thinking that might look more normal, but I just ended up holding the stress ball while making a claw--go figure! I now try to think of it as a friendly affectation. -r
  10. 1). Should I really tell my doctor if I start taking an allergy medicine? I saw an old post on the ‘Ask a Doctor’ forum where Dr. Okun suggested that a pwp let their doctor know before starting a new medicine. My allergies were acting crazy this week, so I started Claritin on Wednesday—do doctors typically need to know/want to know that kind of thing? 2). Speaking of allergies, do your symptoms act up more when you have allergies? My tremor has been a little worse than normal since my allergies kicked in. 3) (but related to 2) my tremor has been pretty bad this week, which was disappointing because I went from a daily dose of .5mg of Azilect to 1mg this past Monday. My tremor was better than it’s been in a couple of years last week (while on the .5mg dose), but this week it has just been alright, not as good as last week. I’m starting to wonder if the 1mg dose is too much. That said, I’m also in grad school and had a paper due today that I’ve spent all week working on. So maybe the extra tremor activity is due to a combo of allergies and paper writing stress. These are all rather pedestrian and slightly whiny questions, but I’m completely inexperienced with even something as simple as ‘having a doctor.’ I’ve of course been to the doctor before, but only as a kind of once a year get some antibiotics/cough medicine/whatever-it-is-I-need and disappear until the next year thing. Also, Parkinson’s is weird. It should try to be more normal.
  11. saguaro

    Pre PD Surgeries w/anesthesia ??

    I am only very recently diagnosed (about a month ago), but I had an appendectomy in January of last year and noticed that my tremor was much worse afterwards. My guess is that the general stress of having surgery and recovering only exacerbated whatever problems there were at that time.
  12. saguaro

    Slow Progression

    Dr. Okun, you mentioned above that 9-10 years is on the slower side for PD progression. I know all Parkinson's patients are different, but I was wondering if as a newly diagnosed 27-year-old, should I be keeping in mind that I may only get 9-10 years of being responsive to medicine, or 9-10 good years? I guess I'm just wondering what I can expect for the future--can hope/plan to live a fairly normal life for the next 10 years, or hopefully 20+ years? thanks, -s
  13. saguaro


    Thank you all for the warm welcome, and thank you for the info on parkinson's sources. Secret Squirrel, when my neuro. tested my sense of smell, she had me close my eyes while she held a paper towel full of coffee grounds under my nose. I think it was her idea of a joke Stump, I was an army brat growing up, but I have a lot of family in the Tucson area. I swear I spent half my childhood driving between El Paso and Tucson. Not that I'd complain about that. I'm in the Dallas-Ft. Worth area for school now
  14. saguaro

    Positive Thinking and Relaxation Techniques

    For me, when I'm on my own, yoga and meditation/prayer really helps. I used to get really tense around other people, especially as a teenager, because of my tremor. What helps now is giving myself a nice wrist massage, or just focusing on pulling my shoulders down away from my ears and focusing on breathing. Really zeroing in on my breathing keeps me in a good head space and out of the land of toxic thoughts.
  15. saguaro


    Thank you for the warm welcome! I've been more than happy with my neuro. Adam, I've always banged into things as well--now I don't have to apologize for being clumsy. Do you have any go to sources for keeping up with PD research? I feel lucky to have found some medicines that work. As a kid, the occasional doctors I'd see about my tremor would almost always jump to calling it an essential tremor and put me on sedatives. My parents never kept me on the medicines too long--they weren't very effective, and they left me pretty zoned out. So it's good to see a big difference without any prevalent side effects.