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About sandybette

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  1. sandybette

    Parkinson and treatment drugs

    - Sorry that your mom is now diagnosed w/ PD, but it seems like you'll be a good support for her. I, too, was started on pramipexole (currently taking the extended release formula once a day @ 3 mg. level), and I also used rasagaline (1mg. once a day), but, now that I've hit the doughnut hole for Medicare drugs, it's too expensive, even for the generic, so I'm quitting that. A friend, who is a neurologist, (not the neurologist I use) feels that it's worthless anyway. My neurologist says that there was debate about whether it had some neuroprotective effect, but it's OK to stop, and, if the symptoms get worse w/o it, he'll either increase the dose of pramipexole or start some levadopa. I exercise really vigorously every day except for one day of rest - an hour every morning - 3 days a week on the elliptical for 30 min. + floor exercises, then 3 days a week on fitness strength machines + nu-step + 10 min. of elliptical. It's all hard enough cardio/high intensity to get sweaty, make it tricky to carry on a conversation, etc. - but, my PD really hasn't progressed much in the 5 yrs. since diagnosis @ age 65 or so - and my neurologist feels that the exercise is why. (I used to run 3 miles/day, but, living in FL heat/humidity, I can no longer do it, and had trouble w/ my feet on the treadmill, so it's the elliptical now.) His philosophy is to treat exercise like a drug, & don't skip a dose. I wish you & your mom well - tell her to just keep moving!
  2. sandybette

    dbs overstimulation and is explosion possible

    Thanks to all who responded - we deeply appreciate your advice/concern/suggestions. My friend did go back and have the voltage turned up and is experiencing better quality of life. Thanks!
  3. sandybette

    dbs overstimulation and is explosion possible

    Thanks, Mireille - I understand that the patient doesn't control it, but what happens if it is already almost at full power to have any effect? Does it burn itself out? Do the leads melt? My friend (for whom I'm writing as she can no longer do so - though I, too, have PD) has had PD for 35+ yrs., and had her DBS many, many years ago, and her doctor has told her that it should not be turned up any more because she is at the maximum now, but she needs more help from it as her quality of life is quite poor now. She wonders what happens if she can persuade the doctor to boost it just a bit more.
  4. sandybette


    If a DBS stimulator is turned up as high as it will go, will it (or the leads) explode - or what will happen if it is at maximum power for too long? (This is a question from someone who has had PD for over 35 yrs., had DBS many years ago, &, is now finding little to no relief - and doctor has warned against turning it up any more.) Thanks for any advice.
  5. If a stimulator is turned up as high as it will go, will it or the leads explode - or what will happen if it is at maximum power for too long?
  6. sandybette

    Reading Material?

    I've read just about everything out there for PD, but I found 2 books by J. Eric Ahlskog, M.D. the best. One is The Parkinson's Disease Treatment Book - available pretty cheaply (used) on Amazon.com - can't remember, but maybe $5-10.. (This is not the same "Treatment Book" that you mentioned.) The copyright is 2005, though, so I also bought his Parkinson's Disease Treatment Guide for Physicians - available, but pricey (maybe $50 ish) from Amazon.com (again, used), copyright2009. Both are excellent - obviously the first is an easier read for a layperson, the second has more up-to-date info - and I wanted the most info I could get. Our PD support group concurs that his books are the best. Good luck. - Bette
  7. Hi - I read your post and realized that you're located in Boca, too. I'm about 2 yrs. into my diagnosis (age 67), taking generic Azilect & Mirapex, have tremors in one hand, don't swing arms, have rigidity and slowness - have had a few falls. We've all been through the roller coaster of emotions you feel, and our hearts go out to you. If it helps at all, I live in a retirement community here and run a small support group for residents & anyone else who wants to come. You'd be more than welcome, though all of the people are older than you. We talk over the latest research from MedPage and discuss problems anyone's facing with meds or whatever, and often the group, while small, has good suggestions for individuals. We also share info about anything that we can use to help ourselves (like the tremor spoon, key assists, techniques for rising, etc.). If you're interested in coming, it's the 3rd Thurs. of the month @ 1:00. If you contact the local Palm Beach chapter of NPF, the chapter president knows who I am and can give you my contact info & let you know where to go. I believe that there's another support group in town, too - maybe affiliated with the (free to those who join NPF) Surf & Turf PD exercise program at the Y. (There are other great programs in town (most free) that we can discuss if you decide to contact me.) This newly-diagnosed page & the others on this website are remarkable assets - and you will have a lot of info & support here, Best wishes for you - remember, we all care.
  8. sandybette

    Merry Christmas_Diagnosis

    Jaime, welcome to the group! We're all sorry to hear about a fellow receiving the diagnosis, but it's wonderful to have the support of this community. It's also wonderful to share experiences, suggestions, ways to cope, responses to meds, etc. I, too, take Azilect - and had a bit of nausea @ the beginning, but my body adjusted w/i a week. I, too, often have fatigue, but I figured that this was a result of the disease, not the Azilect. Who knows whether Azilect helps as a neuroprotective device or not - but, if you can afford it, it's worth the gamble. Again, the best med seems to be exercise - every day w/o fail, just like a drug. Lately, I've started on Mirapex ER to try to deal better w/ the tremors & insomnia - it, too, caused some nausea in the beginning, but that's easing up, and I may ask for a bit higher dosage @ next month for better effect on the tremors/stiffness/slowness. With this drug (& probably the others, too) the motto seems to be "start low, go slow" - to allow your body to get used to the drug & to avoid being overdosed. I, too, am blessed w/ a spouse (husband) who is very, very supportive & joins me in reading everything in the library about PD, looking through the MedPage articles daily for anything involving PD, attending lectures & exercise sessions for people w/ PD. So, it's not the best diagnosis in the world, but we hope to have many, many, many good years ahead - and a positive attitude is really important. I have a good friend who has had PD for 26 years & is still living independently, very active mentally, etc. - so keep your spirits up - and get on that treadmill! We're all here to cheer you on.
  9. sandybette

    Newly Diagnosed and Very worried about Miraprex

    Hi, Jill! Try not to panic here. I understand your concerns about Mirapex because I've read the insert, too. Both a friend, who is a neurologist, and my neurologist recommended starting on Mirapex at a very low dosage - so I've started (1 month in) - I trust both of them and know that they really feel that this is the best @ this time for me. My husband won't let me drive until we see how I deal w/ the med - maybe for a year? I'm fortunate that this is a viable option for me as we are both retired. Maybe for you, carpooling with someone would work? I believe that most people don't have to worry about the compulsions until the dosage gets higher - and then, maybe,it's time to switch to Sinemet. I'm new at all of this, too, though older - 66. I've started on meds mainly because the tremor affects my ability to write, I have insomnia, am slow & rigid, etc., etc. - and it's all so frustrating, but I'm learning to deal with it. Supposedly, it takes a while for your body to get used to Mirapex & for it to be fully effective - so, I've seen some improvement, though the symptoms aren't all gone. I'll wait a bit longer, then, maybe, ask for a small increase in dosage & see how that goes. If there are intolerable side effects, I'll ask to switch. So far, I've only had slight nausea on two days - not bad. Yes, it's not a kind disease, but, really, I feel pretty lucky that I don't have some other really terrible health problem - it could be Lou Gehrig's disease, incurable cancer, something really disfiguring & disabling. You have a lot of good years in front of you - and you need to focus on what you can do, for you have lots of abilities - try not to focus on what gives you trouble. Remember, too, that what seems to be the best drug is exercise - so take time out of the day to do that faithfully. It's good that you've told folks @ work so that they'll understand if you're having a bad day - but you don't need to be defined by PD, nor do the people @ work need to define you that way - and, though it's not great, no, it's not the worst thing in the world. Get with those who can keep your outlook positive. You're still the same person; you just have a few more challenges on your plate - so, work to make the best of the hand you're dealt, and I hope that the Mirapex helps without difficulties for you. Research is making advances every day - and, hopefully, by the time our PD gets worse, better drugs or even a cure may be available.
  10. sandybette

    Helping Father & Mother

    Rebecca - If they can make the trip to FL, I highly recommend the area around Boca Raton - the PD support here is incredible. Once you pay $25 to join the local chapter of NPF, you're eligible for the free surf & turf (land & pool) exercises @ the Y (several times weekly), also the weekly yoga & tai chi classes. There's also a phenomenal once a week, hour and a half Boca Ballet for PD class that is amazing - not just ballet moves, but modern dance, tap, etc. moves designed for all levels of PD - w/ a live accompanist who plays great stuff - classical, show tunes, modern, etc. - and delightful people who participate - and really gifted, enthusiastic leaders & assistants who provide whatever help is needed during the class. (It's patterned after a program begun in NYC.) We also now have a weekly 1 hour PD radio program, monthly talks by professionals @ our chapter meetings. You couldn't ask for more help & support. We have a couple of movement specialists in town and some excellent neurologists - also the U of Miami offers a great deal, though is farther south. The local hospital is building a neurology center right now. The forums on this website have been a real gift to me (diagnosed a yr. ago) - so much info & support - keep reading! It's too bad that your parents can't tap into this - it'd help them so much - but you can relay a lot of it to them. Good luck to all of you.
  11. sandybette

    New Diagnosis...Pretty Worried.

    Will - don't get into a tizzy over the diagnosis - agreed, it's not wonderful, but, as I've seen where we live in a retirement community, things could be lots worse (Lou Gehrig's Disease, scleroderma, stroke, cancer, etc.). Here, we have quite a few PWP who have lived happy, productive lives w/ PD for several decades. Yes, moving around and tremors & other symptoms are frustrating, but there is help out there - and research is constantly searching for ways to assist us. I'm 66, diagnosed last yr. - taking Azilect only - can't decide whether to get on other meds @ this time. My neurologist recommended Azilect for its possible neuroprotective aspect, but said it'd probably not help the tremors/falling/other problems (& it hasn't). A friend, who is a neurologist where we used to live and has reviewed the studies, believes that Azilect is probably worthless. My neurologist felt that the DAT scan was unnecessary (as did my friend), so I haven't bothered w/ it - & it's probably an expensive item that really doesn't make any difference in the long run (though I'm sure doctors would like to order one to cover themselves by ordering one) - (and, apparently, you really need to be an expert to read one, so how would a patient know if an appropriate person read it?). So - who knows? Live your days as fully as possible, exercise lots (apparently the best "medicine" available) (both body & brain), enjoy the people in your life, don't obsess about the future, and, above all, keep a positive attitude. Also, keep communicating here - we all seem to rally around one another - and it really helps to realize you're not alone. Thanks to everyone for pitching in.
  12. sandybette

    when to start meds

    Thanks to all who answered - sounds as though maybe the best thing to do is to try meds & hope that the side effects aren't too bad & that some new treatments come along quickly before the current meds don't work well anymore. I see the neurologist again in Nov., & will ask for meds & see how they work. Thanks again to all of you - I wish you the best & a positive outlook - we all need to keep hope.
  13. sandybette

    when to start meds

    I'm 66 & have been diagnosed for over a year, mostly on the basis of tremors (hand, chin) & occasional falling, though I've also had morning problems w/ low blood pressure, night problems w/ temperature regulation & insomnia. My question is about when to start meds. There seems to be conflicting advice - some say start right away, others say to wait until the symptoms are truly bothersome (especially because the meds have side effects like dyskinesia). One doctor told me to start, another said to wait. So - what do you think?
  14. sandybette

    CoQ10 beneficial?

    Am I correct in thinking that there is little reason to take 1200mg of CoQ10 daily for PD? The cost is steep, and I believe that a 2011 study found it to be ineffective - true? Thanks
  15. When jogging on the treadmill (5.5 mph), I experience very variable pulse rates (measured by both the treadmill readout and by a chest strap monitor + wristwatch readout). In one session, the rate will change frequently, going anywhere from 80 (which seems low?) to 180 (which seems scarily high). I've asked several doctors (internist, cardiologist, neurologist) about this, and no one has seemed concerned, but now that I've been diagnosed w/ PD & have started on Azilect, I wonder whether this is OK, is it normal, is it safe, should I do anything about it? Thanks