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Everything posted by stump

  1. I get that you intended humor, but I would caution against that specific kind of humor. It can turn serious if you aren't really careful. That said, I recently had a neuropsychological exam. It revealed some memory issues and fluency issues that were unexpected, at least for the doc doing the exam. My executive function, for the most part, was "Superior" for my education adjusted age group. A bit different from what was expected for someone with a PD diagnosis as executive function is typically where the deficits are found. The memory issues put me in the "low normal" category and verbal fluency was "mildly impaired" according to the report I got. I think that's because when asked to list every word beginning with a certain letter I stumbled pretty badly. In conversation, other than occasionally needing a little more time than normal for word finding I'm fine. And outside of the test I could think of way more words. Anyway, while I may have sounded a bit harsh in my first reply, please do stick around and contribute and learn from this group. I wish this group wasn't necessary, but am glad for it at the same time since it is necessary.
  2. Brisket turned out fantastic. Next time I'll let it brine longer - it was obvious when I cut into it that the brine hadn't fully penetrated to the middle yet. Typical brine time for the size of brisket I had would have been 10-15 days and I only gave it 6-6.5 days. Otherwise no changes. Definitely going to try this with some game meat when I have more available. Next up though, I think, will be a pork belly and making my own bacon.
  3. 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.
  4. If your wife is "very understanding, patient, and always there to help with with anything I need" then you're a damn fool if you do anything but hold on to her. Rest of it might be worth responding too when I'm not so tired, but seriously, just because your wife wants to be more social than you are presently comfortable with is no reason to contemplate divorce. You might need some help with adjusting to your new limitations, but your wife is a willing partner in all of your struggles. Honor that.
  5. There will be quite a few friends coming over on Sunday afternoon. To start getting ready for that I have a brisket soaking in a brine solution in my fridge. I had hoped to give it closer to 9 or 10 days in the brine, but the 6 I was able to make happen will have to do. Rather than boiling it like true corned beef I'll be smoking it. That's closer to pastrami, but I won't be doing the traditional pastrami coating of peppercorns and coriander seeds on the outside. So it will be somewhere between those 2 types of meat. Hoping it turns out well. If not, at least it won't have cost a fortune. I got the brisket for $2.32/lb, so even with all the salt and spices that went into the brine I'm only out maybe $35 if it doesn't work out. Hate to lose even that much, but at least it's not some hideously expensive cut of beef, or worse yet a precious elk roast. I'd cry if I ruined something like an elk roast. BUT, if this does turn out well I'll give another couple tries before hunting season. Then if we get another elk (I'm really hoping Thing 1 draws an antlerless tag) I'll see how it works with corning an elk roast. If I get a bear I'm going to try making bear bacon if at all possible (e.g. if it's fatty enough, and if I cut it correctly in the field). If not, corned bear roast is high on the list to try.
  6. BTDT, bled on the T-shirt.
  7. I'm starting to get a little rigidity when my meds have worn off. It's one of the ways I know I'm overdue. Mostly it's a stiff leg or a stiff forearm. But it's still not very bad even if I'm way late on meds.
  8. By the way, I'll be watching the F1 race in Barcelona on Sunday morning. I'll have to get up before 5AM my time in order to watch it on my laptop. Too bad Fernando Alonso is having such a torrid time with McLaren. I'll likely tune into the Indy 500 just because he'll in that race this year.
  9. I got my Dx at 38. 19 months later and work still doesn't know. Far as I'm concerned it can stay that way until I'm close to needing to request accommodations. Mean time I'd rather not risk losing out on a cool assignment or promotion because someone decided to get stupid. Most of the time, if I keep up on my med schedule, my symptoms are not readily apparent. Eventually that will change. For now this works, for me.
  10. I'll echo that a 4 year old won't even begin to understand what PD is. I have 4 kids, youngest is 4, oldest is 13. We haven't told any of them. We'll likely tell the oldest 2 kids in another year or two. By then they'll be able to understand what we're telling them, and have the emotional maturity to handle it. For what it's worth, I'm almost 40 and was diagnosed at 38, so not significantly different from you. For you, with a 4 year old, I'd not make any big secret about it. If you aren't worried about your employer, friends/family, or whoever else finding out about your diagnosis then I'd just deal with the disease openly, but without making any production about it. Then your child will grow up and it will just be a normal part of their existence and not something to worry or fret or get stressed over. Oh, yeah, don't stop working unless you really have to, or just want to in order to be a full time mom. PD, especially at early stages, is more of an annoyance than anything else, and shouldn't be disabling this quickly. For that matter, have more kids if that where you feel led. The odds of your kids getting PD is not all that much different than any random person getting it. It also most likely won't interfere with your ability to be a great mom until both your current 4 year old and the hoped for new baby are grown and on their own. Keep exercising, and if you decide to take meds now (I did when I was first diagnosed, and I don't regret that, but it's a very personal decision), or if you decide to hold off on meds until later, know that they can make a big difference in your quality of life when the time for starting to take them is right for you. Like Adam me estudio Español en collegio, pero soy malo en hablar español. Also, like Adam, I grew up in Rochester, New York, though I haven't lived there in almost 30 years. I'm about 110km north of Seattle now. I did get to live in New Zealand for a year as an exchange student. My first choice was a Spanish speaking country, but the idiots at my high school in the USA said no. I still don't get that. Would have been awesome to live in Spain, or Chile, or Argentina (before their economy went to crap), or any of several other Spanish speaking countries. Had an unforgettable time in New Zealand though. Still have friends there. But on some level I wish I'd gone somewhere non-English speaking to get that experience of thoroughly learning the language.
  11. Fair enough. I don't recall reading that, but I also only read a fairly small fraction of posts on this forum.
  12. Yes, it is a requirement. You may just have very mild bradykinesia such that you don't notice it. Though your doc probably does even if they say it's not a problem. Not that it's not there, just that it's not a problem. DaTscan is not an inclusive criteria when positive, but is an exclusion criteria when negative. All that said, we do have New Normal with multiple docs saying clearly PD, but multiple negative DaTscans.
  13. Well, to let my pedantic side show a bit (more), a clean MRI in your case doesn't mean it must be PD. It just means it isn't MS, ALS, tumors, or strokes/bleeds detectable by MRI. PD still requires you demonstrate the required clinical symptoms of bradykinesia plus one or more of resting tremor, rigidity, and postural instability. Many MDS's still won't Dx without some additional item like a positive DATscan, or positive response to Sinemet, especially in younger patients. I think my MDS still says "probable PD" because it's only been less than 2 years that I've been seeing her. A couple/three more years and if nothing is causing her to doubt the Dx she'll drop the "probable".
  14. The injection was for a contrast dye. When I had my diagnostic MRI they did it without contrast dyes. There are only a few specialized places that do DATScans. It requires a PET scanner, which is a totally different technology than an MRI. The MRI is looking at your brain structure. It will show any lesions that would signify things like MS or ALS. It will also show any tumors or evidence of bleeds/strokes. By contrast (pun intended ) the DATScan uses a radioactive tracer to look at how much of the brain is still taking up dopamine. The PET scanner reads the concentration of that radioactive tracer to map where it goes in the brain. Edit to add: If you have PD (with no co-morbidity, or if you are perfectly healthy) your MRI will come back totally normal. So, unless there is some reason to expect an indication of MS, or a tumor, or bleeds, you will most likely get a clean bill of brain from the MRI folks. PD is not detectable on an MRI, or even a standard CT scan.
  15. I've had a few trips to Detroit, which for me is a 3 hour time change. Trips were just a few days in duration, so I kept taking my meds at the same West Coast time. So instead of 8AM/2PM/8PM I took them at 11AM, 5PM and 11PM Detroit time. That worked OK, but I'm also early enough in this disease that it's less of a deal. If you can, just maintain your home time schedule I'd recommend that if the trip is only a few days. More than a week and you might need to adjust to local times. No good tips on dealing with nerves while flying. I love flying (small airplanes, not so much with commercial but that has more to do with the way the airlines and the TSA treat you than anything else) so I never have any nervousness or fear.
  16. Men's retreat went well. Main topic was perceverance, and Hebrews 12:1-2. Got out for halibut Saturday morning. Didn't catch anything, but it was very good to get out and give it a go. Thinking about a thunder run out to the coast for (likely) final halibut day on Thursday. I was very worn out Sunday night, but at least that meant I was able to sleep well. jb49 - It's the solitude that I'm after in many cases. If not it's the chance for a shared experience with my closest friends. Camera crews would ruin that. So, you all will have to settle for reading my reports and seeing the occasional photo. 😀
  17. Mostly self taught. Mom taught me some, but mostly it my own experiments.
  18. I haven't read the research papers, but before the FDA will approve anything it has to go through a lengthy and expen$ive process. Part of that is doing proper controlled experiments. If they did those, and the experimental group did no better than the control group, even if it's a safe procedure, it won't get approval. If they haven't done those tests, then until they do it won't get approval.
  19. Far as I'm concerned it's a different shade of lipstick on the same pig.
  20. Not really tip top shape, but I try to do as much as I can anyway. And getting in better shape is part of the point of that. Cooking halibut is pretty dependant on personal tastes, but basically any recipe you could use any other white fish you can use halibut for the same dish. If I get a decent amount of fillets I'll probably smoke some this year. Other than that, I like some simpler baked or grilled dishes with a little butter or oil, a decent dusting with salt and pepper, some herbs (I like tarragon with fish though I do use others as the mood strikes), maybe a lemon slice and cook until just getting flaky. Don't over cook it! Another dish my wife and MIL like with halibut is to dust the fillet with a salted/spiced/herbed flour, dunk in scrambled (raw) eggs then coat in bread or cracker crumbs and press into some shredded paramsean cheese. Then pan fry until cooked through and serve with a nice salad of your liking. The best part of the halibut, bar none, is the cheeks (ling cod too, though it needs to be at least an 8lb ling before the cheeks are big enough to bother cutting out). For that I get really simple. Melt some butter (or use bacon fat), sprinkle the cheeks with salt, sautee some garlic in the butter (if I want to be fancy add some fresh herbs to the butter too and sautee until fragrant), then cook the cheeks until barely cooked through, turning after a couple minutes. The flavor is a really good halibut fillet flavor, but with a texture more like scallops. Ling cod and rockfish often get cooked the same as the halibut above. I'll also use them for fried fish (though cabezon is my preferred species of frying as it holds up best to frying, and isn't as good as just a baked/grilled fillet) and will serve the pieces as either fish-n-chips or for tacos. Salmon usually gets smoked. If not there are a few baked fillets I've done, but none were remarkable enough to note. I did make rilletts once with some salmon I got from a hatchery. Because they were spawned out fish they weren't worth grilling or baking. So I smoked half the fillets, and poached the other half. Then shredded them and mixed them with sour creme, lemon juice and zest, salt, butter, green onion, and parsley. Then packed the mix tightly into jars and topped with melted butter. Keeps for several days (maybe up to a week) in the fridge and freezes very well. Trout, if I keep them, which I only will if they are wild or are a holdover from a previous year's stocking, typically get baked or grilled whole as they're too small most of the time to be worth filleting. Best is if you have a campfire to wrap the fish in aluminum foil with butter, onion slices, a lemon slice and any herbs/spices you want and toss that on some coals. Predominant crabs out here are Dungeness Crabs. They taste very similar to Atlantic blue crabs, but are about 4 times the size. We also get red rock crabs sometimes. They definitely aren't as good, but still very much worth keeping. In the Puget Sound the limits on crab for sport fishing is 5 per person per day, minimum 6.25" carapace, male (never seen a female that was a legal keeper at that size anyway) and hardshell only. Red rock are 5" minimum, either sex, limit of 6 per day. You're allowed 2 traps per person and up to 4 traps per boat. 2 traps is all I can manage on the kayak anyway. Only bear meat I've had was made into sausage. Bear meat is something (when served as a steak or roast at least) that most people either love or hate. I think a lot of it has to do with how the meat is cared for from the moment the shot is fired until it gets frozen. Just like with deer and elk you can ruin otherwise fantastic meat if you don't keep it clean and get it cold quickly. The other big factor is the bear's diet. Because they're omnivores the time of year and the food available makes a huge difference as it can vary considerably during the year. In the spring they're often feeding on forbes, grass, and whatever else they can find. By fall depending on where they live they might be eating berries all day long, or spawned out salmon. If there are people nearby they might be eating garbage. A spring bear that's been eating flowers, forbes and grass will probably taste sort of close to grass fed beef. A berry stuffed bear will have a sweeter taste and probably have a very dark meat. A bear eating spawned out salmon will probably taste like a tidal mud flat, and a garbage eating bear will probably taste like, well, garbage. If someone gets bad bear meat, whether due to poor care or poor diet, they usually fall into the "hate it" camp and never try it again. One thing about bear meat (and also cougar/mountain lion meat - which I've been told is like the best pork you ever had) is they should always be assumed to contain trichinella parasites. So, cook it accordingly. Minimum temperature to kill the parasites is 137F, but that must be held for about an hour. 160F will kill them basically instantly. In between is, well, in between for time at temperature. Had squirrel stew once which was quite good. Rabbit can be really tasty too. Haven't duck hunted yet, but would love to if I could find the time. I live in the best county in all of WA for duck hunting. But too many other hobbies right now.
  21. So, back at the beginning of the month I went in for a baseline neuropsychological exam. Partly it was for baselining, partly because DW was getting worried about some memory issues she was starting to notice. Anyway, for those that haven't been through the exam I thought I'd detail my experience so you'll have some idea of what to expect. To begin with, the neuropsychologist I met with (Dr Jeff Shaw at the Booth Gardner Parkinson Center at Evergreen Health in Kirkland, WA) was a very nice guy that I found to be very easy to get along with. In contrast to a lot of psychology types (my sister is one) he came across as a pretty normal person and not some esoteric academic that thought his poop smelled sweeter than everyone else's. As an aside, with a master's degree I'm the least educated of my immediate family. Both parents and my sister have PhD's, so I've grown up around academics, and most have a horrible superiority complex. Anyway, Dr Shaw and I chatted for a bit, partly about my PD, partly about just me, partly about anything that might be an issue in the future if I were to apply for disability, or for DBS. Included in that was whether I'd talked to anyone professional about the likely mild PTSD I'd had after a car accident when I was a teenager. Once we got to the main part of the test he ran through a huge range of tests. Most of them were either timed or time limited. One was part of the military entrance evaluation where he timed me connecting the dots on a sheet that were numbered 1-26. Then I had to do the same except it was 1-A-2-B, etc. Then I got a complex drawing that I had to copy. Then I had to reproduce that drawing from memory. After a few other tests were run I had to try to reproduce that drawing from memory again. Among the other tests were things like repeating back strings of numbers (starting with 3 and increasing as I did well). Then repeating back the string of numbers backwards (again starting with 3 and increasing as I did well). Then repeating back the string of numbers except in order from smallest to largest. I was read a list of words and had to repeat back as many as I could remember. Then a different list. Then he'd rattle off words and I'd have to identify whether they were on only the first list or not. Then do things like name every word I could think of that began with a particular letter. Another test was there was a page with a bunch of colored dots. I had to state the colors in the order they appeared. Then a page where the names of the colors were spelled out, but the name of the color did not match the color of the ink used and you had to name the color of the ink, not what was spelled out. Then a page like the second page, but some of the colors had a box around them and those you gave the color that was spelled out, not the ink color. A friend of mine was telling me his 10 year old daughter had been going through some cognitive therapy and did that exact same test. There was a test where I had to look at 2 shapes and then a line of other shapes and mark the one that matched one of the 2 original shapes or mark that none matched. There was matching a code to various letters or numbers. Being told a fictitious person's name, address and phone number and having to repeat it back at various points throughout the exam. A story (about 4-5 sentences) you had to repeat back as exactly as possible, and got ambushed with that again later. There were some mental math exercises, and some tests similar to what they did for my Occupational Therapy baseline exam a year or so ago. Grip strength, manual dexterity tests, etc. He skipped most of the psychological profiling since I'm not applying for disability yet. He said with disability claims the insurance companies like to try to pin your problems on mental health issues if they can since those benefits are much more severely limited. There was more, but that gives a good idea of what all you go through. Even reading through all of this, I don't think it's something that you can really prepare for. You'd have be extremely familiar with not just what the test includes, but why each test is done to be able to effectively throw the results of the exam. Especially since some parts are designed to catch malingerers, and on a publicly searchable forum I'm not about to say which. I went back last week for my follow up to discuss the results. Bottom line was the doc didn't see anything that really alarmed him or made him think I was at risk of anything in particular. I scored in the 80th percentile or higher on most categories, except memory and word finding where I scored in the 40-60th percentile (so basically average). All of those were corrected for a male with 18 years of education (masters degree). FWIW, a 50th percentile woman would have a higher score than a 50th percentile man for memory at least. As far as what that noticeably lower score on memory indicates, he said it's really hard to say as I don't have a pre-PD exam to compare against. As he said, the memory could have always been like that, but I'm smart enough to be able to compensate in other areas. It's also possible that PD is starting to affect memory. But, like most with PD, it's more a matter of immediate recall. Once something is there it might take longer to retrieve it, but it is still there.
  22. Here's my lemon poppy seed bread recipe. I usually double this, and for my loaf pans that makes 3 loaves. It's pretty scaleable, so feel free to go up or down as you need. 8 Tablespoons of Butter 1 cup sugar 2 eggs at room temperature the zest of 2 -3 large lemons 1.5 cups of GF flour (I prefer King Arthur gluten free baking flour, if you can't find it Pamela's Artisan Flour is good too) 1/4 teaspoon xanthum gum 1/4 teaspoon baking soda 1/4 teaspoon baking powder 1/2 teaspoon salt scant 1/2 cup buttermilk 1/2 to 3/4 teaspoon vanilla extract scant 1/4 cup orange juice or lemon juice (I sometime do half orange half lemon) 1/4 cup poppy seeds Glaze: Juice of a lemon (or more depending on how much glaze you want) powdered sugar Preheat oven to 350 degrees. Lightly grease and flour a loaf pan. Combine buttermilk, orange/lemon juice and vanilla in a small bowl and set aside. In another bowl, combine flour, salt, xanthum gum, baking powder, and baking soda. In your mixer cream sugar and butter (beat until fluffy). Beat in eggs - one at a time - and chase it with the lemon zest and then the poppy seeds. Alternate adding the wet and dry ingredient mixtures to the batter, starting and ending with the flour. Once you start adding the flour you need to be ready to go quickly. Gluten free is really sensitive to being over-mixed. Don't go so fast you splatter the mix everywhere, but the less time the mixer is running once you start adding the flour the better. I usually stop the mixer about half way through and scrape the bottom as with my mixer as I find there is a layer of butter/sugar that doesn't mix in well if I don't do that. And I do that again at the end too. Also you don't want to leave it sitting after mixing for very long so have the loaf pans greased and ready and the oven hot. Pour the batter into the pan and smooth the top. Bake for 45 - 60 minutes, or until a tooth pick comes out clean. Baking time will depend on how thick you make the loaf. First time I made this I doubled the recipe but only used 2 loaf pans instead of 3, and as a result of the extra thickness it took over 90 minutes to finish cooking. If you make them into muffins instead of loaves the baking time will probably be less. Remove from oven and let cool for five minutes, then turn the pan upside down (over a plate!!) and tap on the bottom until the cake slides out. Continue to let cool. Combine the lemon juice and powdered sugar, stirring it into a glaze, and top the cake as desired. I found it takes an astounding amount of powdered sugar relative to the lemon juice to get the glaze thick enough. I've never measured it, but I'd guess that if you had half a cup of lemon juice you'd need at least a full cup of powdered sugar. I just keep adding sugar until the glaze gets good and thick. It should still drizzle off your spoon, but slowly. I usually coat the bread with enough glaze that you only sort of see the bread through it, and I let it drip down the sides. You may find you like it with more, or less glaze. Let the glaze dry for a while before you wrap up the bread. How long? I dunno. I just go by when the glaze cracks if you flex it. The bread does freeze well, so I like to make at least a double batch and freeze whatever won't get eaten within 2-3 days.
  23. Will do. Just give a bit until I can use my laptop instead of my phone.
  24. Yeesh, that's tough. DW has Celiac, so I get the gluten issue. If he won't voluntarily avoid gluten you're going be at the mercy of the staff to monitor him and redirect anytime he heads for the snack bar.
  25. It should. The same basic exam is used for DBS screening, disability applications, and general monitoring of disease progression. Depending on the purpose they may skip some parts I did, or include some I skipped.