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Everything posted by stump

  1. Much of your story sounds familiar. I was also diagnosed at 38 with 4 kids and wife that's a SAHM. Also noticed a fair bit of progression early on. The similarities though stop about there. As you will hear often around here everybody experiences PD somewhat differently. Had you come here before informing your employer most would have advised against that move. What's done is past, but depending on who you work for that could turn out to be a neutral move, or a poor choice. Rarely is it a positive outcome when first diagnosed. Eventually you are forced into disclosing, but putting that off can have advantages. After 2 years I have still not told my workplace, and don't intend to change that for many more years if I can help it. Anyway, regarding meds, I started on Sinemet right away. I felt like I had 5 years previously. Tremors went away, anxiety (which was really only a few discrete events) went mostly away, and that feeling like I just wasn't quite all right (which had been there for several years before tremors started) went away. Only side effects I've had were some easily mitigated nausea when I'd take the meds (eating a cookie was plenty) and after a year or so an increase in daytime sleepiness. Both of those issues went away when I switched to Rytary which is an extended release version of Sinemet. So, I have zero regrets with starting the meds right away. But that is an intensely personal decision that nobody else can make for you. There are others on this board that do regret starting meds right away, or who delayed meds for years and are thrilled with that decision, and there are others that regret delaying meds.
  2. Need your opinion...on Retirement disability

    One thing to keep in mind is that as we age we lose muscle mass. You've obviously got a stout frame, and it's certainly possible that you'd be emaciated at under 200lbs now. But a "lean 290" at HS graduation is probably a healthy/lean 240-250 at 43. Glad to hear you are getting meds figured out. The agonists have a lot of downsides, and fatigue/sleepiness is a big one. Before I ever started on meds at all I had issues with daytime sleepiness. 2-3PM and I'd be seriously fighting to stay awake. If I could power through usually by 4-5PM I'd be OK again. Didn't matter if I ate a lot of carbs, or virtually no carbs. So as a result I have refused the agonists as I didn't want to risk even more sleepiness problems. I started on C/L and haven't looked back. Once I started on meds it got better for a while, then it came back in a big way. Once I switched to Rytary (an extended release version of C/L) it got better again. I'm just hoping it doesn't come back yet again.
  3. One of the side effects listed was weight loss. For some of us (ahem - down about 10 lbs of the 35 targeted) that might not be such a bad thing. But for a lot of PWP, especially in more advanced stages and/or when elderly that weight loss can be a big problem. There are probably other side effects but that was one of the bigger ones.
  4. Anti-emetics

    On my kayak fishing trip last weekend I used a Scopolamine patch to combat sea-sickness. From my mid/late teens to now I've struggled a lot with motion sickness on boats. Interestingly not on small airplanes. Anyway, pre-PD the Scop patches worked wonders. Far better than Bonine or Dramamine at keeping me off the rails of the boat. I'd often still wind up vomiting, but at least with the patch I could recover afterwards whereas with other medications I'd be down for good once the heaving started. When I put the patch on as I was heading out for the coast (it takes a couple hours to get up to full effectiveness) it wasn't very long and I was starting to feel a little queasy. Once I got to the beach that feeling persisted. The ocean was actually fairly calm, maybe 2-3ft swells on average at probably 8-9 seconds. A few 4-5ft rollers, but not many. I got through the time I wanted to fish, decided to head back in, and after I had everything stowed and was paddling towards the beach it hit fairly hard. 2 or 3 good waves nausea and vomiting. After that I managed to dig deep and paddle the last mile or so back and landed through the (thankfully benign) surf. The net day I was just not feeling great all morning. Granted, other than a salad I didn't eat anything the night before. I did eat some oatmeal for breakfast. But that upset tummy feeling persisted. I eventually launched through the surf anyway, and fished for a few hours (to no real success), and then called it a day and headed back in. Didn't get to the point of puking at least. Loaded up all my gear in the car and drove for home. Still feeling like my tummy wasn't very happy for most of the drive, once I was far enough on the drive to be past the ferry portion I took the patch off finally. Within about an hour of doing that my tummy felt just fine and all queasyness went away. Brought that up with my MDS this morning. She suggested that the anti-cholinergic effects of the Scopolamine were probably doing something with my brain to cause that reaction and suggested I not use the patches anymore. Which, of course, begged the question of what to use. Her suggestion was Ativan (aka lorazepam). I"m really leery of using a benzo for anything. But I'm trying to keep an open mind. Have any of you ever used Ativan/lorazepam for combating motion sickness or nausea from other causes? She suggested taking 1 pill at home to test how I react and if favorable then use it when on the kayak. I'm certainly not going to even do that until my wife is back from her trip to her mom's. I'd want a responsible adult around just in case I had a bad reaction. Even if I do decide to use this for sea-sickness relief this will be a very occasional use drug. Like the 30 pill scrip she wrote will probably last me for 3-5 years. So I'm not worried about developing any addictions. Still, any advice is appreciated.
  5. Need your opinion...on Retirement disability

    Not to pile on, but I agree with the other posters that 350lbs is likely hurting your overall health, no matter how athletic you seem to be. Get down to the low 200's and you probably won't have the issues with diabetes, and high blood pressure. Might even help the thyroid issues. Fatigue will most likely also be improved as it takes a lot less energy to sustain a 200-220lb body than a 350lb one. Also, as others mentioned, getting meds stabilized should help you a lot. Switching from regular Sinemet to Rytary really helped smooth out the levels of meds in my system and that did a ton to help with issues like daytime sleepiness. You may need to change dose, frequency, or even type of medication. It can sometimes take a couple/three months to get everything to settle out for some people, so if things don't improve immediately with a change don't give up right away. As far as disability retirement goes, while I can definitely understand wanting to punch out, think about it long and hard. A lot of people, men especially, find a lot of the meaning in their lives from the work they do. Quitting, even if you have enough money coming in from disability insurance, is not without consequences. If that is the right move for you, then certainly go for it. But realize that not everyone is psychologically able to retire in their early/mid-40's.
  6. Bible Verses....

    I haven't yet, but have been meaning to read the writings of Dietrich Bonhoeffer. Everything I do know about him is very inspirational. For those unfamiliar he was a Lutheran pastor that chose to return to his native Germany as WWII was breaking out because he knew that if nobody was there to resist Hitler that his evil would only spread farther and faster. As a consequence of his actions he was imprisoned in a concentration camp and executed by the Nazi's I think a month or two before the war ended.
  7. Anti-emetics

    Right on! I sure hope you DH has a great time, and also hope he gets a good opportunity to shoot that moose. Been forever since I've had a moose steak, but they are seriously delicious. My elk hunting buddy wants to go to Alaska for a moose hunt for his 50th birthday. IIRC that will be in 2020 so I've got some time save up. It is not a cheap endeavor. As far as my pursuit of fishing goes, my DW thinks I'm nuts to keep going out there knowing I'm going to get sea sick. She's probably right. But that determination of still getting out there and doing it is just part of who I am. And I think it is ultimately what will keep me going long after most would have given in on something like PD. Note, however, that with my disability insurance situation being so good that I will punch out of my career sooner rather than later. But that will be so I can do the really important things, like playing with my kids, and having these cool experiences outdoors (and especially when I can share those with my kids).
  8. Anti-emetics

    I might just give that a shot. I'll talk my doc about Tigan too. Smoke out here is pretty bad. Not so bad it affects my breathing, but I can't see much in the way of surrounding hills that I normally can see quite clearly. I'm just hoping the winds shift and blow the smoke out to sea. Hope your DH is able to get into some good fishing. I'm debating on another fishing trip as I don't have time for everything and we do need to finish the chicken coop, get a goat shelter ready, and I need to get going on preparing for hunting season.
  9. Anti-emetics

    Can't take personal credit for that picture, just grabbed from the web. Though, if I'd had my camera I could have taken one just like it many times. The sea lions like to hang out around that buoy and I see them there more often than not when I fish out at Depoe Bay.
  10. Official diagnosis today

    Yes, very much this. DW and I recently embarked on an exercise/weight loss routine. Right now I'm working on fitness more than weight loss (working up on duration on a stationary bike - currently at 40mins 4x per week, stepping up to 50 minutes next week), though some weight loss is coming along for the ride. I have an interview on Wednesday for a supervisor position at my current place of work, and after that I will probably try going low carb to enhance weight loss. If you go really low carb and go into ketosis you can get some bad breath and body odor issues, and I really don't want that during an interview. Interesting aside - DW said that people on levodopa therapy can't use the urine ketosis test strips as the meds cause a false reading (not sure if false positive or negative). Anyway, I do notice on the days that I ride that even if I'm late with my meds my symptoms are less apparent than on days I don't ride. So that is a real, and clear benefit. If I can manage to stick with the exercise I will probably experiment with reducing my meds to see if that is viable. Fewer pills is always a good thing if you can tolerate it.
  11. I do wish my experience with Azilect had been more positive. Though, given the cost (even with insurance), maybe that's not such a bad thing for me. I forget what it would have cost, as I was still using samples from my MDS when she pulled me off it. IIRC she gave me a 4 week supply of samples, and pulled me off it after 3-3.5 weeks. Very glad for those that tolerate it that there might actually be something to the protective effects.
  12. Official diagnosis today

    That is basically where I was about 2 years ago. So I know what you are going through. It's a gut punch to be sure. But, my best advice to you is to try to live you life as normally as possible. And anything you've always wanted to do (e.g. Bucket List) kinds of things, don't delay doing them. Don't go broke in the process, but really, don't let PD stop you. You've got a while where the disease is really going to be more of an annoyance than anything else.
  13. DBS Benefits & Un-Benefits

    That is in line what I've come across. Which is why I was pushing waruna01 to provide data. I get that a lot of studies are pay-walled, but are abstracts and such are often still available that give some of that data. Thank you for your post. I'm likely still 2-10 years away from DBS. I'm hopeful that by then they'll have figured out a way to reduce the already low rate of complications and nearly eliminate the most severe ones. Whatever the case, when my MDS recommends it I will likely pursue DBS.
  14. DBS Benefits & Un-Benefits

    OK. So what is the actual rate (including citation to a non-paywalled source, please)? Sorry, but this is shifting of the goal posts. Now you're saying it's hard to tell the difference between DBS effects and normal progression, but then still blaming DBS. Which is it? Again, this is shifting of goal posts. Mind you, I am NOT saying the DBS is innocent. Speech problems are a known side effect. Not once have I disputed that. My issue with your claims rests on the extent of that effect. Death can also occur. I'd rank that as worse than losing speech capability. But death can also occur from any surgery (including root canals). I'd prefer to have actual data on the rate of adverse outcomes and actual data on positive outcomes (and the extent to which those co-occur in patients) and then use that to asses my tolerance for the risks of the procedure vs the benefits. Again, what are the actual rates? I get it that it doesn't matter if it's 1:1mil if you are the unlucky 1. But, not knowing ahead of time, I'd take the 1:1mil chance. If it was even, say, 25% chance I'd never be able to verbally communicate again I'd be reticent. So what are the odds? I don't have the data, but you certainly sound like you do. Please post it and show me that you are actually right and my skepticism is mis-placed.
  15. Anti-emetics

    Well, the MMJ product I got to see about reducing motion sickness was a huge failure. I got one of the liquid extracts, the highest proportion CBD the store had. Put it on a bagel I ate for breakfast. The MMJ liquid tasted nasty. Tried this on Friday when I went kayak fishing off the Oregon coast, hoping that I could avoid the technicolor yawn. The other guys out there were wondering where the Steller Sea Lion was, and were quickly pulling their stringers of fish out of the water (keeps them cool). Then they realized it wasn't a sea lion, but the sound of me retching. I managed somehow to power through the first 4 sessions of vomiting as I was determined to get a keeper fish to show for it. Told myself I'd head in as soon as I got one. Landed a 25" ling cod (legal minimum is 22"). Figured I'd drop my lure again and see if I could get another (limit is 2 ling cod per day, plus other species with separate limits), and promptly puked for the 5th time. Figuring God was reminding me of the difference between perseverance and folly I called it a day and paddled back to the harbor. About 300 yards out from the channel into the harbor I couldn't hold it off anymore, and that made 6 rounds of chumming the waters. By the way, I can confirm that partially digested creme cheese is especially difficult to clean off of a drysuit. If you eat a bagel for breakfast before going fishing, some other accompaniment would be a better choice. For those not familiar, this photo is a group of steller sea lions hanging out on the bell buoy that's about half a mile out from the harbor at Depoe Bay.
  16. 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.
  17. Summer adventure season starting

    Spent the last 3 days crabbing in the Puget Sound from my kayak. Started Saturday morning and wound up spending the night at our friend's home since we didn't finish cooking that days catch until pretty late. Turned the pots again after church on Sunday, then headed home to atke care of the chickens. Monday morning (today) went back and pulled all the pots and called it a weekend. Didn't do nearly as well as I'd hoped, and I think that more than once someone else took crab from my pots, but we still wound up with around 15-16 keeper size Dungeness crabs. For those not familiar, 1 dungie is a pretty large meal for my wife and older kids, and 1-1.5 makes a meal for us guys depending on what else is being served. Compared to the blue crabs on the east coast, it would take a good 3-4 blues to equal the meat on one dungie. If I can get a picture or two from DW I'll post them. Shared a bunch with our friends. Rest we still need to shuck and freeze, which we'll do tomorrow. Got the kayak fishing tournament on the Oregon coast coming up in just under 2 weeks. Before that we're heading to Idaho for a few days. Going to take the kids to a waterpark one day and hit a lake the other couple of days.
  18. Starting Phase 1 Clinical Trial Next Week

    Hey now! I'm only 40. Let's not get premature.
  19. Starting Phase 1 Clinical Trial Next Week

    Yes, thank you for volunteering for this study! I have participated in a couple studies, though nothing like as invasive as you are talking about. That is something that, at my current phase of life, would not be possible to participate in. The risks to my kids if something bad happened are too high, plus with my career still very active the time required to be away from work would be a big problem. Though, as of a couple minutes ago, I'm officially old enough for that trial ...
  20. Just had MRI

    It is true that they can't diagnose with 100% absolute certainty other than through brain biopsy after death. That said, I think the "probable" Dx has more to do with wanting to follow a patient for long enough to be sure before putting the formal(ish) stamp on the Dx, as once they reach that point the odds of being wrong are tiny. I think that once you are >95% confident in the Dx there's little point in saying it is still only "probable PD". Besides, if I went to a disability insurance company looking for a new policy I don't think they'd give me a pass because my doc said "probable PD" rather than "PD."
  21. DBS Benefits & Un-Benefits

    This much I will gladly grant you. It is indeed an unmoderated forum, and you did express a personal opinion, not a scientific fact, though you made it sound like you had data behind your assertion. I countered your assertion with skepticism. This is not without precedent. Had you said "DBS has plenty of benefits, but some (% uncertain but could be closer to 50% than 0%) have issues with severe speech and balance problems after surgery that cannot be reversed by programming, turning off the stimulation or removing the hardware" then you would have made a similar point and I would have just nodded, maybe said something about the rates if I had data at hand, but probably just passed it by without comment, like most of what I read on here. At the end of the day, however, I have read, by far, more commentary from those happy with their DBS experiences than not. And while some on here have reported speech and/or balance problems it is not usually the near total loss of ability to communicate or severity of balance problems you asserted were more common than not as an outcome. I have no doubt that Sierra Farris and some others you've spoken with about this have horror stories of such effects. It wouldn't even surprise me if they reported high rates of such problems in their patients. But those folks only see people that are already in the "adverse outcome" category for DBS so they tend to give a somewhat skewed perspective. My question is, what are the actual rates of those adverse outcomes? STN DBS has been around long enough to have a sufficient population to draw some conclusions about the rates of various side effects and complications. If the rate for extreme speech impairment really is 50% or more I'll happily grant you the point, and will probably take DBS off the table for personal consideration. However, if the rate is more like 0.50% then I'll probably take my chances. Please understand, I'm not meaning to pick on you. This is very much not personal. I just have a real difficulty seeing assertions that appear to have sound data behind them when they really don't. That can mislead people in ways that are potentially significant. If someone reads your claim and sees no counter claim they might choose to avoid DBS and thereby miss out on a (positively) life-change procedure. Of course, the flip side is also true.
  22. DBS Benefits & Un-Benefits

    First off, where on that site did you find those stats? A quick perusal didn't show them, but I admit I only spent a couple minutes looking. That said, that website is written by someone that specializes in people that are unhappy with their DBS outcomes. So, not only could there be bias in sampling to come up with those numbers, she also has a vested interest in people finding dissatisfaction with DBS. That is not to say she is at all unethical, or doing anything against overall best interests in the PWP population, but one must always consider the source. Color me still skeptical of your claims of >50% of DBS patients having near total loss of ability to communicate and developing severe balance problems as a direct side effect of DBS.
  23. DBS Benefits & Un-Benefits

    I haven't seen stats, so do you have a citation for "(m)ost people lose their speech after DBS and lose their ability to communicate with other people." I've certainly read that speech problems are a recognized potential side-effect. But "most" (i.e. >50%) is not the impression I've had of the occurrence of not just speech difficulties but near total loss of verbal communication. Same with balance. I wonder what the %'s are of the admittedly small number of PWP that have had DBS on this forum?
  24. Scammer alert

    I got a PM from a user calling themselves Cynthiakonate. Message was a variant of the classical Nigerian scam of inheriting a bunch of money/property/etc but wanting help selling it, moving the money, and similar. Tried to dress it up in Christian sounding terms too. If you get a message from this user, or anything even vaguely similar please ignore it. It is a scam, and no good will come from responding to it, or anything else. I reported the PM to the moderators. Hopefully they ban not just the user name but their IP address.
  25. Scammer alert

    Thanks ForumAdmin!