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stump last won the day on February 25

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About stump

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  • Birthday 06/24/1977

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    Northern Puget Sound, WA

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  1. I've chosen generally to stay out of this thread due to the comments by Roger and pdmanaz and similar folks. Perhaps I shouldn't stay away, but I just have so many other things to do with my time. That said, Linda - Welcome back! Very sorry to hear about your cat. It's the somewhat downside to having pets that we usually long outlive them. But, I'd rather outlive my pet than the other way around as they are so dependent on us. I've had to put down a couple dogs and my cockatiel died of extreme old age. It never gets any easier.
  2. Hey Russell - You might get a response or two here, but probably not very many. A) we've had a few folks trolling for personal data claiming they were doing a school project. B.) folks that can't effectively use a spoon probably have major problems typing too, and that would severely limit their desire/ability to contribute/participate on this forum. I would recommend you try to find some Parkinsons support groups that are in your area and visit those (talk to the organizer first) and ask for feedback there. Also try some nursing/assisted living facilities and see if they'll allow you request your data from the residents. FWIW, my responses to your questions are 1) none (other than when the cook does a bad job ); 2) no; 3) no; 4) none (yet anyway); 5) see above.
  3. Don't worry about not being "young onset". If you feel like you have something to contribute, do so! It's all good.
  4. So, finally had a chance to trial the lorazepam tonight. Took half of a 1mg tablet about 3 hours ago. From what I've read that should put me at about maximum effect an hour or so ago. Good news is, I'm not at all sleepy (well, since it's 11:30PM that might be bad news too). I don't feel loopy, or anything adverse. A bit calmer than I was earlier tonight. I could tell that I would have had an anxiety attack if I'd missed my Rytary, so it's possible that the lorazepam is helping with that a bit too. So, I'm pretty confident that if I took a half tab before getting on a boat (whether a charter boat or my kayak) that I'm not going to be a danger to myself because of the lorazepam. Whether it will be at all effective at preventing sea-sickness remains to be seen. I think I will also try to get ahold of some CBD oil to see how it affects me. If that goes well then I guess I'll just have to experiment with each next couple times I go fishing. It sounds like there's potential for bad interactions between CBD and lorazepam, and with the long half life of each I'd want thorough separation between them, like a week or more just to be safe.
  5. Your neuro will refer you to a neuropsychologist for the exam. In my case (I have my npsy exam coming up in early April) they're in the same building and part of the same center. But in your case they might have to send you elsewhere. Even if, between medication optimization and exercise/PT, you are able to hold off from a disability retirement it would still be a good idea to get a npsy exam done. It gives a baseline that can then be compared against in later years to show how you have progressed. It's also one of the exams that can be crucial to a disability claim being successful.
  6. I can't help you too much with if/when to file for disability. There are so many variables about the only thing I can really recommend would be for you to perhaps make an appointment for a consultation with a lawyer that specializes in employment law and/or disability law. The other thing would be to request a neuropsychological exam. Since it sounds like physically you are close to qualifying for disability, if the results of the neuropsychological exam show substantial cognitive deficits that might help with justifying the disability application. The hard part about SSDI at least is that you can't apply until you quit working. If you are still working you must not be disabled, right? At least that's the thinking of the bureaucrats. But, it takes a while to get the money from SSDI flowing, and if you don't have a short term disability benefit from work it can be tough to get by between the time you quit and the time the SSDI checks start to hit your account. That said, if you get approved they will pay you the back-due benefits so it's not like you're forever out the money for that time period. I'm guessing not, but as it's a larger chain restaurant, maybe you do, but do you have any disability insurance from your employer? Or do you have the fortune of having a private policy? Although most policies won't let you double dip between the insurance and SSDI (and any back payments by SSDI will get scarfed by them most of the time) those policies do at least give you the bridge between leaving work and starting SSDI benefits, plus they usually give you more total income than SSDI alone. E.g. if your insurance DI works out to $2000/month, and SSDI benefits are $1400/month, while you still will only $2000 total ($1400 SSDI plus the $600 difference from the insurance) but you do at least get that from day 1.
  7. Best of luck CECE with getting your GI issues figured out.
  8. Called Impax this morning to check on the application for patient assistance. They said I was approved! I'll be all set to stick with Rytary until about this time next year at a minimum. I figure I came in just under the income threshold for a household of 6 people. Which is good because it seems like Rytary is working a lot better for me than the regular IR 25/100, but there's no possibility of affording $630/mo (at least, maybe more) to pay for it out of pocket. I will try to see if they can get my insurance to cover it by next year. I have no issue with paying the co-pay (IIRC $30 for a 3 month supply for name brand drugs). Heck, I'd be OK with $30/month for it.
  9. ^^^ Yeah, that. NN - we all love you here. I do wonder if, after 5 negative DaT's that maybe there's something else going on. I'm far from knowledgeable enough to say for sure of course, but I'd be wondering about LBD (especially with your reported cognitive issues) as well as some of the Parkinson+ syndromes. Also, I'd be wondering about tumors that just happen to be in the basil ganglia. Maybe even Lyme and heavy metal poisoning (that your DH is suffering similar issues brings these to mind). It might be time to have some of the screens for those done, or redone if they were ever done previously.
  10. As it's an agonist be watchful (and have friends/family be watchful) for some of the side effects like compulsive behaviors that are fairly common with the agonists. Beyond that I got nothin' to help with. Never used that med, and haven't studied it specifically.
  11. In the past I've used Scopalomine patches for sea-sickness prevention when going ocean fishing. Last time I used it I started to get nauseous shortly after putting it on (long before I hit the water) and wasn't feeling good again until a couple/three hours after I took the patch off (long after being back on dry land). I also got sea-sick (i.e. vomited) in conditions that probably didn't really warrant the patch in the first place, but as conditions can change quickly, and had been predicted to be worse than they were I didn't want to take chances. Plus, it takes a couple hours for the patch to reach full effectiveness, so it's not like I could leave it to the last minute to choose to use it or not. Anyway, my MDS recommended Ativan in place of the Scop patches. I'm leery of benzo's in general but am willing to try it. A few people have also suggested medical marijuana products, e.g. CBD oil, as a possible option as well. MMJ is legal in my state (as is recreational use, though I've seriously never tried it, even in college). I don't want the "high" if it's possible to avoid. What is your opinion on the use of Ativan or MMJ products for treating motion sickness in PD patients? Is there anything else you would recommend I try? I've tried all the OTC anti-emetics and ginger. None of them were particularly great. Before PD the Scop patch was by far the best solution, but now it seems I can't use it anymore.
  12. My co-pay was no different between the Mayne and Teva generics. If I mail-order through Express Scrips it's $20 for a 3 month supply for any generic drug. However, I've been on Rytary since mid-January, and got my last order or regular C/L I think in November. So if co-pays for generic C/L have changed at all I wouldn't know. I'm still waiting to hear back on the Impax patient assistance program to see if I'll stay with Rytary. If they deny my application I'll be either going back to regular C/L or a CR version (or a combination of the 2).
  13. Linda has had computer problems in the past. I wouldn't be surprised if that is what is keeping her off the forum at the moment. At least, I hope that is the case and not anything health related.
  14. Yeah, not my real name. I picked that because my PD became apparent after a couple long days of turning trees into stumps. Anyway, to respond to your answers: 1) 6x per day is about as stretched out as you can get. Don't know what you tried to combat nausea but some things that have worked for me is to eat a little bit of high carb/very low protein food when the nausea started to ramp up. For me it didn't take much. A cookie, a cracker or two was usually enough. The other thing is to titrate (ramp) up slowly. If you tried 2 tabs all of a sudden that can throw your system for a major loop. Making changes at half a tablet (or even a quarter tab) at a time can make all the difference. I never experienced it, but some folks also found that toughing it out for a month or so would result in side effects like nausea going away as their body acclimated to the meds. 2) If you're not puking from overdoing the exercise you can probably be doing more. I'm certainly guilty of saying more than doing on that front. But, exercise is the only proven method to slow progression. A lame excuse, but my cold this weekend prevented me from getting the exercycle back out. But, I will do that tomorrow (wife got the cold too and is sleeping right now and the bike is in the bedroom). I'm motivated though by more than just PD. I want to go halibut fishing in May when the season opens here in WA. Halibut are a physically demanding fish to land in the best of circumstances, but factor in that I'll be in a kayak, and needing to paddle around 2 miles off shore to get to the spot and being in better condition may be a huge factor in success. 3) I went from 1.5/1/1.5 25/100 C/L each day to 3/2/3 Rytary 23.75/95. That was based on my MDS's recommendation. The higher dose is due to the reduced bio-availability. I think that schedule needs some tweaking, but need to talk to my MDS about that. I might try 3/2/4 though just to see what the effect is of going to 4. The original prescription was 3/3/3 so if I do that I'm not exceeding the total daily dose. If I get side effects from 4 I might try 3/3/3 and see what happens. As long as day time sleepiness doesn't rear its ugly head again I might go with that. We'll see. It will likely take a bit of experimentation. 4) I didn't notice all that much of a difference in the various C/L generics. But, we are all different. I would certainly encourage you to stick with Roche if that works for you. BTW, Teva sold their C/L line to Mylan. I will need to get my 4 kids in bed here in about an hour. Luckily the 2 olders are low maintenance in that respect, but the 2 youngers are 5 and 4 so that take a little more effort.
  15. Rytary has mostly eliminated the mid-afternoon sleepiness I was having on IR C/L. But the tremor and slowness in my left hand are definitely worse than on the IR C/L. Not sure if the dose needs tweaking, or if I need to add a little bit of IR back in, or what. But even at the level of issues with tremors I'll take that over the sleepiness with just IR, or the tremors with no medication at all. I will say that I've had fewer issues with nausea since the switch. Didn't have big problems previously, but the first dose in the morning would sometimes give me a grumbly tummy until I ate something. Or if I was doing a lot of physical work and not eating much the afternoon dose would sometimes cause issues. Thus far I'd say that's even dropped by 75+% with the switch to Rytary. Though, if I'm under-medicated at the moment that could also be part of the side effect improvements.