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Everything posted by stump

  1. DBS Update

  2. Rasagiline and other drugs

    The other idea is to call Teva and/or whoever is making generic versions. Often they'll have patient assistance programs to provide the meds at low or no cost to the patient based on income. That's how I'm able to afford Rytary (made by Impax) which would otherwise be $700/month.
  3. Just got the news 😕

    Welcome to the club. Not that you wanted to join. I was diagnosed at 38. I have 4 kids, a career, and at the time I was also half way through an MBA program (I did finish it, on time even). So I can fully empathize with where you are. That said, anger and stress are not going to help you. I've never taken any anti-depressants so I can't help you much there. If you need to talk PM me your phone number. Happy to tell you my story, listen to yours, and hopefully help you process things.
  4. Rasagiline and other drugs

    I probably had the worst reaction to Azilect of anyone active here. Started taking it shortly after I was diagnosed a couple years ago. Within a few weeks I was experiencing short term memory problems, agitation, and then hallucinations. Quit taking it once the hallucinations started. That said, most people seem to tolerate it very well. So I wouldn't avoid it necessarily because one person reported that reaction. But I would keep a close eye on it for similar issues.
  5. Parkinson's patient abusing opioids?

    PD meds do require a fairly strict schedule. Opioids are an "as needed" drug and other than pain increasing there's no downside to minor delays in administration. I don't take benzos but I thought those were once, maybe twice a day at most. If so she shouldn't be soooo worried about that coming on a strict schedule. I would suggest you call something like a nurse helpline and find out what your legal options are to get a handle on the medications. Without a medical power of attorney you can't force anything to happen. As someone above mentioned if there's a "favorite" sibling that your parents (or at least your dad) will actually listen to you might be able to get him to do something productive. At least figure out if she really is abusing the opioids.
  6. protein and absorption

    I had a bad reaction, but most have better experiences with the MAO-B Inhibitors. Have you tried any of them (e.g. Azilect)? They are supposed to prolong the time the dopamine stays in your brain. If you can tolerate them well that might give you the extra time between C/L doses to get the chance to eat normally.
  7. protein and absorption

    Unfortunately I think any of the controlled/extended release will be worse for you as they need as much or more separation.
  8. protein and absorption

    Can you maybe protein load earlier in the day and then eat something very low protein between 5 and 7?
  9. 23 year old female worried about PD

    If it makes you feel better you can see a neurologist and get a more definitive answer than we can, but from what you described you most likely do NOT have PD. Your symptoms, as described, are not consistent with PD. Those twitches you described are not tremors. I highly recommend you put PD out of your mind and go live your life. Take a vacation, find a way to de-stress, or something. Maybe reduce the course load for a semester or two.
  10. 23 year old female worried about PD

    Not really. Twitching and tremors are different things, and twitching is not a PD symptom at all.
  11. 23 year old female worried about PD

    Onset in early 20's is much less common than in the 30's and older. But not unheard of either. That said, you sound more like you need a vacation than an appointment with a neurologist. My best advice would be to find some better coping mechanisms for your stress and anxiety and to stay away from Dr Google.
  12. 23 year old female worried about PD

    Don't take this the wrong way. I really am just hoping to help you out. I saw a presentation given by an MDS in the Seattle area (not my doc, but one I considered until finding out she was out of network for my insurance) where she said that anytime she sees a young woman presenting with PD-like tremors she screens for psychogenic causes. Not that she thinks all young women with PD-like symptoms have psychiatric issues causing their symptoms as there clearly are young women with PD. But the cold hard truth is that A) PD is 2:1 in affecting men vs women, B.) young onset is already only 5% or so of PD cases, and C) 80+% of psychogenic tremors occur in young women. What she is trying to do by screening those women for psychogenic causes is to try to limit the risk that they are mis-diagnosed, and for that demographic the most common mis-diagnosis is to assume PD when it's really a psychogenic cause. PD meds are nothing to trifle with, so if you don't need them you are massively better off not taking them. So right there the odds that what you have is something other than PD is quite high. Add in that you admit to having health anxiety and I'd put $5 on your issues being anxiety or other mental health issues rather than PD. When I was going through the diagnosis process I hoped like heck it would turn out to be stress related, or some previously un-diagnosed psychiatric issue (and I had zero history of anything like that). Because the alternative to that was PD, or something even worse than PD (all the things less bad than PD had been ruled out by testing). If I'm right about your issues that would be really good news for you. Why? The good news if that is true is that your issues are curable. PD is a progressive, degenerative neurological disorder. There is no cure, no treatment that does anything more than mask symptoms, no hope beyond the vague predictions of researchers begging for more grant money that something more beneficial can be found. Now, all that being said, I'd consider a new primary care doctor if your description of their reaction to you is accurate. If they openly laugh at you that shows a lack of professionalism and a lack of compassion. They might ultimately be right, but by not seriously considering what you are telling them they are not doing their proper due diligence in determining what you real problem might be.
  13. Update to meds

    Saw my MDS yesterday, along with the Speech Therapist. I wasn't supposed to see her again until mid-January, but I've been having problems with being dizzy when standing, been having a hard time sleeping sometimes, and meds have been wearing off and less effective overall. Plus, following my neuropsych eval back in April she had said at my July meeting that she wanted me to see the speech therapy folks due to the issues with word finding. Overall, not terribly eventful, but I did get my Rytary increased from 3x3 to 3x4 per day. I had been taking them at 8/2/8 so a six hour interval. I'll now be taking them, I think, at 7/11/4/9 which will give me a 4 hour interval during the work day, but I'll stretch it to 5 hours in the evening. We will see how that works out. For breakfast it might actually work out better. I seldom eat at home before going to work, so taking it at 7AM will mean that by the time I'm getting peckish at work I'll be at a good time to eat. Plus, the 8AM timing was tough on Wednesdays since I a standing teleconference with the India team from 7:30-8:30, and I'm usually in my boss's office for that call (boss and an India team rep in the office too), which means I either take meds 30 minutes early or late those days. This should avoid that issue. I think 11AM won't interfere too much with lunch since I can just wait until noon to eat, which I do anyway probably at least 3 days a week. Meds at 4PM likewise should be no problem with food since I rarely eat dinner before 6PM, and by 5PM I'd be good to go. The 9PM one might occasionally be a problem, as sometimes we don't eat until 7-8PM or so. But that will still be better than the 8PM med time from before since if we ate anytime before 7:30 I'll be OK. For dizziness she wants me to work more on hydration, including adding more electrolytes. We'll see if that cures it. Hope so. For difficulty sleeping she was recommending Sleepytime Tea, or chamomile tea/herbal supplements, and/or melatonin. She also thought the additional Rytary would help. Thankfully she was in agreement that anything stronger was uncalled for. The speech therapist had me do some additional tests for word finding. One of the things she had was a book with pictures and I had to name the object. Started off great, then got to some that I really struggled with. The harmonica, beaver, paint, and couple others I'm not recalling I really stumbled over. The picture of the paint board I could never come up with the name until she flipped it over. Then she had me do the "every word (not proper nouns or different forms of the same base word) starting with the letter S" in one minute. Struggled with that about like in the neuropsych eval. Got some exercises from the speech therapist to try to help out with that. As I mentioned in a DBS thread, I stated that I assumed at this point we were still several years away from even beginning to discuss DBS. She agreed with that, and said that even if I was getting close to that point, which I'm not since the meds are working well and I don't have any dyskinesias yet, that she would recommend waiting if possible for another 2-5 years. There are a ton of advancements coming down the pike for DBS that will make it less invasive and better overall. Currently battery packs and controllers are implanted in the chest or abdomen in operations that, at least in the USA, are typically done under general anesthesia. Average life for the battery packs is 5 years, so if you have DBS done at, say, 45, you're looking at an expectation of 9 total battery packs if you live to 90, so the initial pack plus 8 replacements. Some will need more, some less depending on a lot of variables. But even you only need 5, that's still a lot of surgeries to replace it. One advancement she said is in development is a battery that can be placed under the scalp, and it sounded like it was intended to last substantially longer, possibly long enough to never need replacement in your lifetime. Plus, with now I think 3 companies with FDA approval for DBS systems (IIRC they're Medtronic, Boston Scientific, and St Jude) they are all working on improving leads, lead placements, control systems, programming, and so on. We are likely in an inflection point for advances in DBS such that waiting, if tolerable, is likely the best plan. Eventually things will taper off in terms the rate of advancements. I'm hoping that we'll be in that phase of the development curve by the time I am ready to seriously consider DBS.
  14. Gluten?

    Nope. I will just point out that a gluten free diet is actually not a great choice unless you really need it (e.g. celiac disease). Unless you just cut the gluten rather than replace it anyway. Reason is that gluten free substitutes are higher carbs and higher glycemic index. Plus it's about 4x the cost. DW has Celiac's, so we've been in the middle of this for years.
  15. Biggest Unanswered Questions in PD

    This is the biggest one in my book, at least as far as PD research goes.
  16. The absolute best exercise program is one you like and will actually stick with. Great to hear you found one that meets that description for you, and one that is effective for your particular PD related issues! Always good to share things like that. Likely there are plenty of people who are going to find inspiration from that experience.
  17. Update to meds

    Away from home for Thanksgiving, so posting the speech therapists recommendations will have wait until Sunday or Monday. Adam - Main difference when I switched was that some side effects, like daytime sleepiness and some nausea when taking the meds were reduced or eliminated. The extended release formulation spreads out (and reduces the overall amplitude of) the spike in levodopa levels, and also smooths out the drop off at the end of the dose. In changing to 4x per day I'm doing better as it was previously wearing off and generally leaving me feeling under-medicated at 3x per day. I know some folks have had some difficulty dialing in dosage and timing when switching to Rytary. I'd say that, overall, that hasn't really been any issue for me. When I made the switch about 10 months ago now I did titrate up on the Rytary a bit. My MDS had me start out at 2 caps 3x per day after stopping the IR with no taper (works because they're the same medication, and it wasn't much of a drop in overall effective dose). Then she had me go to 3 in the morning and evening and 2 mid-day which was the equivalent to the schedule I was on with the IR. I held at just 2 capsules for longer than she recommended as I wanted to see if I really needed more than that. I did, so I went to the 3/2/3 schedule. That still left me with sub-optimal results mid-day, so I went up to 3/3/3. That worked well for quite a while, but I think some progression occurred as I felt the need to go up on med levels over the last couple of months.
  18. New guy here - a journey I'd like to avoid

    Before starting on meds DW said I would tremor in my sleep. Not much, and she'd only notice if I had an arm draped over her. In fact she didn't really connect those dots until later. But since the meds that's gone away.
  19. What caused your Doc to suggest DBS?

    Dave - that's great that you have a doc that will do the procedure under local most of the time. That, IME, is not the norm.
  20. Update to meds

    ShopGuy - when I get the papers out of the car I'll post up that info. FWIW, with the increase in the meds I will say that I already feel less agitated and anxious. Hopefully that continues and the tremors get better controlled too.
  21. What caused your Doc to suggest DBS?

    You're right, I missed that. However, she's in Europe where they'll do surgeries under local or regional that docs here won't do unless under general. I know in Europe they do a lot of open incision hernia operations under local, whereas here I asked about having mine done under local and the surgeon looked horrified at the idea. Said he'd only do it if I was under general. My understanding is that in the USA the standard is to do a battery replacement under general.
  22. What caused your Doc to suggest DBS?

    That is great that you're getting 7 years or so as an average life for the battery pack. And that it may extend longer. Still, given the choice between having 5-8 battery replacements under general anesthesia vs 0-2 under local anesthesia I know which I would pick. In your case, of course, it was a choice between DBS or no DBS. We are lucky that folks like you went through that back then so the technology would exist and be at a stage of rapid advancement by the time we start to consider needing it.
  23. What caused your Doc to suggest DBS?

    Adam - got some intel today that should be of interest to you. I had a meeting with my MDS. I said my DW would want to know, but that I assumed I was still several years away from discussing DBS. She said that, never mind the fact I'm not at a stage to seriously consider it anyway, even if I was she'd council to wait a few years if you could. They are working on developing a battery that doesn't get implanted in the chest or abdomen, but under the scalp. It would be recharged by wearing a special helmet. Sounded like it would be a lifetime battery (or WAY longer than 5 year replacement windows anyway). Biggest bonus to that is that you don't have go under general anesthesia every 5 years for battery replacement, plus dealing with recovery and scar tissue from perhaps as many as 10 replacement surgeries if you live for 50 years after initial DBS surgery. Something to think about. I liken the consideration for DBS to being kind of like Scott Adams (creator of Dilbert) explains the issues surrounding doing anything about global warming. It boils down to economics in his essay, but a big point he makes is about the cost of doing anything. If you act now it may cost a whole lot more than if you wait for better technology. By waiting you can see what technology develops that might work better/faster/cheaper than what is currently available. WRT DBS surgery I think we're in or very close to an inflection point in the development of the technology involved in DBS. If you can stand to wait another 3-10 years it might be massively beneficial to do so due to rapidly advancing technology solutions to battery issues, control systems development, electrode design and placement, and so on. After all, part of his essay was also that eventually you get to the point that continuing to wait causes costs to increase again, and if you wait long enough then it's impossible to accomplish anything as it's too far gone. In the case of DBS, being too far gone means you've risked out of eligibility entirely, perhaps due to dementia, age, or other factors.
  24. What caused your Doc to suggest DBS?

    No DBS here yet either. As I understand it current FDA guidelines for DBS requires 4 years since diagnosis or at least documented significant symptoms. There are some clinical trials looking at even earlier DBS for YOPD on the theory that DBS might actually slow progression or at least have benefits not available to older patients. For me, that means I don't expect the discussion to even begin for another 2 years. I'm a little of 2 minds about what to do if my MDS brings it up right around the 2 year mark. It'll depend a bit on how progression and medication side effects are impacting things. I like the idea of getting off, or much reduced on meds sooner than later. But, the risks and potential side effects of DBS are nothing to trifle with either. Also, I'm wondering what the cognitive effects of PD are going to be for me, and once dementia sets in you're no longer eligable for DBS, so I wouldn't want to push it out to my late 60's even if I otherwise don't "need" DBS until then.
  25. So, one of my bucket list items is catching and landing a 100+lbs halibut from my kayak. Last several years I've been frustrated by such things as new babies and grad school keeping me from having the time during Washington State's absurdly short halibut season to get out and fish for them. We typically get around 3-4 days a year to chase halibut. I was all set to head out to Neah Bay right up until yesterday when the forecast (which hasn't changed since then) was calling for 5-8ft surf and 7-8ft swells. Being in a kayak, for where I intended to fish, it's a beach launch through the surf zone to get out to the fishing grounds. Even if I was willing to brave 7-8ft swells (and that's beyond my comfort zone) that surf height would almost guarantee I'd get flipped on the way back in. I've never gotten hurt doing that (yet at least), but I have broken equipment. So that's a no-go. Grrr. Just have to hope those conditions keep enough power boats in port to leave enough catch quota remaining for them open it up again next week. Meantime, since I can't go to the coast I'm going to go to my church's annual men's retreat. It will be a great chance to spend quality time with my best friend and many other good men from the church. Bonus that it's on the south end of Whidbey Island, and there's a couple bays just 15 minutes from the retreat location that are supposed to be good for halibut fishing. So, I'm bringing the kayak and fishing gear, and early in the morning on Saturday (halibut is open Thursday and Saturday this week) I'll head out there for a couple/three hours and see if I can luck into one. If not I may try again Saturday evening if time permits. I'll also try fishing for ling cod on Friday after work on my way to the retreat, and possibly on Sunday after the retreat wraps up. Might as well have a go. Never know if I'll get to fish halibut next week until Tuesday or Wednesday anyway. Other trips planned for the summer include a bunch of crabbing from the kayaks with my family, and once the salmon are in I'll try to get out a few times a week before or after work for a couple hours each time. Plus there's the Oregon Rockfish Classic (kayak fishing tournament) I've gone to the last several years that will be July 15 this year. Later in the summer I'll head up to scout a new area for deer hunting, and since there's a decent chance for a bear I'll bring my rifle and bear tag along. That spot will involve 14 miles of paddling my kayak plus a 1.5 mile portage in the middle of the paddle, and a 3 mile hike with 4000ft of elevation gain (each way). Hopefully I'll get to take each of the 2 older kids camping and trout fishing at some point this summer too. Then there is deer hunting in mid-October, and elk hunting in early November. I'll try to update this thread throughout the summer with pictures and stories. Hope I can be of some inspiration to other PWP's out there, and if not, I hope you all at least enjoy the reports.