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  1. 5 points
    How a person lives their life after getting a really bad diagnosis is likely to be much of how they are remembered when they are gone. I got Dementia with Lewy Bodies, so I got dementia and all the parkinson stuff. I haven't killed myself because I don't care to die and I do want to enjoy whatever my situation is the best I can, and I want my family and friends who stick around to see that there is life after getting getting hit with a hardship. Sounds corny, but that is why I haven't killed myself yet. The parkinson stuff is a real kick in the butt, but the progressive dementia stuff is quite ruinous, but between the two things there is still some light to see the day. Cheers.
  2. 4 points
    Good Morning, “Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.” -S
  3. 3 points
    I feel so much love and support from you, dear friends. As I leave for another day at the hospital with my family I will take y'all with me. Love, Dianne
  4. 3 points
    I honestly feel like the words of my dad, "Oh get up, i've had worse than that in my eyeball" coupled up with the "Soldier Up" mental conditioning of US Military service. Along with my grandpa always saying "Doctors bury their mistakes", (no offense intended). Helped me to go another five years after knowing something was not just right. My military training in the heavy equipment mechanic field taught me that little quirky issues will either work themselves out or get worse. Then the first doctor appointment came along with a couple of medicines taken with blind faith, which I will never do again. Then four months of every doctor saying ALS, to walking out of the Dallas VAMC with C/L on the day I was supposed to be confirmed with ALS and referred to the ALS CLINIC. My philosophy of the huge algorithms of life with PD management is. No matter how good or bad today is it could be worse, and most likely a day will come when you will be glad today was not as bad as your best day will be. Life is what you make of it, you are in charge and regardless of what works for someone else, the thing that matters the most is what works for you. The choice is yours to make.
  5. 3 points
    It was so nice to read posts with opposing views that were well thought out and respectful. My big thing with hunting is that it be done humanely. There are different qualities of hunters out there and not all are of your high quality Stump. I would like to recommend a book that some of you may like. It's Some We Love, Some We Hate, Some We Eat by Hal Herzog. It's about why its so hard to think straight about animals. It's been a few years since I've read it but I found it an interesting read. With that said, I would vote for a separate thread labeled Hunting also as even though I eat meat, I do find it disconcerting to read or hear about a kill. Thank you Stump for your well thought out response. I can't kill an animal but because I do consume some meat I'm glad someone can. Temple Grandin has a book out called Animals Make Us Human. She understands animals and works for their welfare and has made huge advancements in the slaughter industry. She's a prime example of one who loves animals and advocates for their humane treatment by educating and implementing improved conditions in slaughter houses by reducing the fear and stress factors for the animals. It's also a truly good read even for those strongly opposed to the killing of animals. It really is possible to love them and eat them as odd as that sounds.
  6. 3 points
    Stump started this thread discussing fishing, kayaking, and hunting. Here's a thought! How about at the first inkling that you see something you don't like, stop reading and move on to the next post. What is wrong with people in today's society that thinks that everyone else should change to suit them? People post stuff online every day that I don't agree with. If I don't like it, I don't read it. Stump, keep on posting. I don't hunt much anymore, but I love eating game that my sister and niece bring home. They both got 8 point whitetails this weekend.
  7. 3 points
    I visited my son for his 21st birthday!!! so blessed with my boys!! LAD
  8. 2 points
    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.
  9. 2 points
    Dear Amy2beth, Dear kat2017, I too am a young onset. Was diagnosed at age 34, some 30 years ago. I took Ldopa (Modopar) right away, as I wanted to enjoy my "young years" to the fullest. An enjoy I did, I even had a baby at 40. I am still taking Ldopa so don't believe those who say it only lasts 5 years. I also had DBS surgery in 2000 and 2002. Being diagnosed with Parkinson's is not a death sentence. You can lead an almost normal life (with reasonable expectations of course). I worked until I was 55, but enjoyed a very favorable job environment in Brussels (Belgium). I have the chance also to have a very dedicated husband who cares for me. I am sure others have provided good advice ( i haven't read all contributions). Welcome to the club. Come and join us in our fight for the cure ! Mireille
  10. 2 points
    Not thankful for the disease...no way... But it has made me thankful for the good stuff in my life. It has changed how I view things. I have a seize the day mindset and have gone on some great adventures. My husband & I discovered dancing and that would NEVER have happened. So I'm thankful that my life is good despite the fact that it's different. But I'll take a cure and be real thankful for that!!! LAD
  11. 2 points
    Hi amy2beth, I was diagnosed 16 years ago at the age of 33. I am now 49 and doing really well. I am fully independent and still working full-time. I have been on C/L the entire time (currently on Duopa, a pump infusion of C/L...it works great at managing both the symptoms of the disease and the side effects of the medication). My main issues are bradykinesia, rigidity, gait/balance issues, and dyskinesias (the result of long-term C/L use). Don't let the PD diagnosis get you down. It is true that we all progress differently; however, young onset PD is usually a slow progression overall. I have two children (9 and 13) and a wonderful wife. PD just becomes part of who you are, but it is never the sum total of who you are. You will learn how to adapt and live with it. We are here for you. It's not always easy...good days and bad days... Sometimes I am strong and can offer advice. Sometimes I am weak and need a shoulder to cry on. So much is happening in the PD world...new medications and treatments due to vast research. Hang in there. Lean on us as you need to! Peace and blessings, Mihai (Michael)
  12. 2 points
    Amy2beth and anybody else I have not welcomed yet, Welcome to the Club none of us wanted to join. PD can be scary and I know when I was first diagnosed at ager 35 I thought my world had ended. For the most part my world as I knew it had ended. After some time and many tears and multiple doctors I now know that my future I once thought I had is still there, just a bit different than planned. Yes you will feel better once you decided what the best path of treatment will work for you. Work with your MDS, and discuss, ask question, if you feel that your MDS is not a good fit find another. I went through 2 till I found mine. Exercise is always good and so far is the only thing that shows promise of slowing this disease down. Positive attitude is the next biggest thing. If you believe it, you just might manifest it. What I mean by this is if you think and believe that you are going to get worse and all is misery then all will be misery and you will get worse. If you believe that you will be fine and you can handle what is given, you will be fine and have everything you need to succeed. I can honestly tell you that I am more happy now than I was 4 years ago before I was diagnosed. Stay positive, allow your self to cry when you need to, but convince your self that it will all work out for the better. I promise you it will. Blessings to everyone Any question for someone a bit further down the path just ask. Adam
  13. 2 points
    Like most urban myths and other tales from the dark side, there's usually some small nugget of truthiness inside most of these sayings. But generally, none of these statements will stand up to the light of day...interestingly these fears are not unique to PD, either. I bet you could name a dozen medical problems that could have similar statements. I think, to the extent possible, I will just make the best of my situation. Even if all this was true, who wants to live wrapped in a bundle of fear...way too much work maintaining that posture. -S
  14. 2 points
    Nope...not my mindset......your attitude is part of the battle that you control....I have PD nut it does not have me. LAD
  15. 2 points
    Hi everyone. Seems like I fell asleep here for a couple of weeks. All is well. I have had a session in Toronto to see if I am a good candidate for dbs. So far I'm good . I am having more tests in january. So far all is well. Hope all is well with everyone. Be safe. Be happy as you can be. Jb
  16. 2 points
    Texas Tom, this is for you:
  17. 2 points
    I had debated for a while if my oldest was really ready to go elk hunting. Those of you that have seen my reports from years past know what a high level of suckage can be involved in hunting elk by kayak/canoe. But, we made a few changes this year and that combined with my daughters maturity and desire convinced me to go ahead and put her in for a youth cow tag. Deal I made was she could join in only if she drew tag. She had 3 points in the draw since I'd been putting her in for ghost points the previous couple of years. Average to draw the tag was around 1.7 points, so I figured odds were good she'd get the tag. And she did. The changes we made this year included my buddy getting a motor for his canoe. He got a British Seagull (aka the Dirty Birdie) that enabled us to get into areas to really quickly and with less physical effort, and then from there we'd just paddle as before. Last year after we got Miss Swampy out we also found out that elk float (before being skinned), so the plan became to tow the elk out under power from the motor to hopefully get home sooner and with less suckage. Another change was we got a block and tackle. Idea was to be able to hoist an elk out of a mud hole if that happened again, plus we could use it to hoist it up for gutting/skinning once back at the truck. All of which was designed to make our lives a bit easier as well as result in a cleaner carcass that we could get into a chiller faster. We got 150ft of static line so we could drag the elk too as long as we had a tree or some other anchor to pull from. Friday we headed out to the area. Since I had my daughter with me I drove separately rather than car pooling as before. We just didn't really have space to be comfy if we all went together. Plus, I knew my daughter would probably need to be run home before the other guys to get back for school stuff. Got down to Mark Collett's place in the early afternoon as his wife was willing to loan my daughter some dry pants and dry top for immersion protection. Then we headed to the campground and got everything ready for the morning. Opening day we hit one of the rivers we had seen a crap load of elk on the previous year. Unfortunately the weather was really too nice for good hunting. Clear, calm, kind of warm, full moon. Pretty much everything you want for a nice weekend at the coast, but the opposite of what makes for good elk hunting opportunities. Saw a 2x2 blacktail buck, but nothing else that day. Next day we hit the same river again, with similar results. Day 3 we went to a different river. Still no elk came out to play, but we did see a family of river otters. They were rather perturbed that were wanting to go by their home. Probably also suffering whisker envy after seeing my mustache. After that third day and really working it pretty hard all 3 days and seeing nothing I was starting to get pretty worried. I had talked to the campground host and he had mentioned that he had some private land he hunted during archery season. Figuring I had little to lose I asked if he could see if that land owner might be willing to let my daughter hunt his land. Some are willing to do that for a kid. But not all. He was in the "not all" category. Which is fine. So, Tuesday we went back to that first river after getting reports of some cow herds being spotted out there the previous day. We went to the lunch tree (so called because we usually eat lunch there) and we all sat down and relaxed and glassed for a while. Eventually I decided to go to my kayak and pull it up a ways so it wouldn't start to float away with the tide still coming in. Plus Steve had his binos in a dry bag in my kayak so I was going to grab them for him. As I started to get up I looked out a ways and there were some brownish dots I didn't remember seeing before at the tree line somewhere around 800-1000 yards out. Got my binos on the spot and sure enough, a small herd of 7 or 8 elk was out there! We got back in the boats and started heading towards them. I always knew it would be a tough approach as the tide had flooded the marsh so there was absolutely nothing to conceal our approach. There was a mix of state lands, timber company land, and individual (i.e. not corporate) owned land and thankfully these elk were in a section of state land so we knew we were OK to go after them. We started to paddle towards them and once we were within about 500 yards went pretty slowly. By the time we were within maybe 400-450 yards I could see they were all cows except for 1 spike. With it being a 3-point minimum that meant this was all about getting my daughter a cow for her antlerless special permit tag. We kept going about as slow as we reasonably could, but before we had closed the distance to anything better than 350 yards they started to head back into the forest. I'm not sure if they saw us and decided to play it safe, or if the ducks that were flying off as we got close spooked them, or if they had just decided they'd eaten enough and were going to bed down for a bit while their rumens settled. Whatever the case, we couldn't get it done on that round. So, we backed out and paddled up the river to another area close to where I shot my cow last year. After checking around that area for half an hour or so we cautiously started to head back down stream again. I kept checking with my glass the area around where we'd seen that herd. Eventually I spotted a small group of 3 elk maybe 50 yards from where that first group had been. There was an obvious lead cow, a yearling, and another smaller probably 2 year old cow. We turned and started to head their way. I had my daughter get her rifle out of the dry bag and get a round chambered (safety still on and good muzzle discipline of course). As we started getting closer I saw that lead cow watching us. Rather intently. Fearing another blown approach, and still being much to far out for me to feel comfortable letting my daughter shoot (both accuracy and round horsepower) I signaled to the other guys to stop so we just drifted over some flooded grass and got stopped. We watched those cows for probably 10 minutes until the lead cow appeared to relax and go back to feeding. Then we started working closer again. Eventually that cow keyed in on us again, but didn't seem overly worried. So we kept very slowly working in closer and closer. Eventually we got to within 120 yards so I had my buddy help my daughter get set up for the shot. I positioned myself a little ways away so I could better observe where they might go after a shot. It took a while for my daughter to get into a position where she was comfortable with taking the shot. She tried prone with the forearm of the rifle on the gunwale but that had her too low to have a good line of sight. She could not get steady enough from a sitting or kneeling position. So my buddy had her take a paddle and stick the blade into the mud/grass that the canoe was grounded on and then use the thumb of the hand that was gripping the handle of the paddle as a rest for the forearm of the rifle (top of the handle was too high to be useful). That got her steady and with a good line for the shot. This whole time the cow just kept standing there looking right at me (but not my daughter who was 20 yards away to my left). However the other 2 cows were out of sight, so that lead cow was the only option. Finally the shot rings out. The cow spins and starts to head towards safety, but slips in the water where there was a drop off. That was it for her other than a little kicking. Within 20 seconds even that kicking was over. She fell maybe 2-3 steps from where she'd been standing at the shot. Once we got to her I used my paddle to touch the eye to confirm death. Then it was high 5's, a couple pictures, and getting a rope around her neck to tow her back to the truck. Took a little bit of pushing and shoving but without too much effort she was fully in the water. And floating. That was a happy sight! The other 2 guys in the canoe were having a little bit of a hard time finding a path deep enough to get back to the main river channel as we were basically in an area that was only flooded because it was a +11ft high tide. So I got in my kayak and found a path with deep enough water for the canoe and the elk. They paddled through that path and once on the river they fired up the motor to start heading to the truck. I paddled back to the lunch tree to gather a dry bag and a couple coats that had been left there when we left the tree to go after that first group of elk. I eventually caught them back up just as we both made it to the truck. Then came the work of pulling the elk from the water and getting her gutted and skinned. Once done with the gutting I took the entrails well out into the water and cut them in a bunch of places to get them to sink and then we got to work on skinning. We had a jerry rigged hoist that didn't give us enough lift, but we were at least able to get her butt off the ground and got a tarp under her. Next year we'll have a better system for lifting an elk up higher. After we got the elk stuck, and part way through the gutting I let my girl sit in the warm truck and relax and rest a bit. We finally got the elk skinned out, got the gear and boats all loaded up, and headed back to camp. Shot was fired about 3:30PM. We were back at camp getting beer out of a cooler before 9PM. We called up a game meat cooler that was about 10 miles away and fortunately they were still up so we boogied over there with the elk so it could hang in a proper temperature and away from rain. Got back to camp and had some food, some beer, enjoyed the campfire, took showers, and eventually hit the sack. When we got it to the butcher, who is a fairly grouchy guy that doesn't shy away from telling you what he really thinks, he was really pleased with how clean it was and how it looked. I took the heart and liver and head home. I got the cheeks off the head for a treat that I'll probably cook tomorrow. The liver I trimmed up and that will be used to make some boudin sausage. I trimmed and dissected the heart too. That's when I found a few pieces of the bullet. Kiddo got the heart with the shot!
  18. 2 points
    Thank You! Various people show up on the forum with "things to sell use for the utimate cure that worked for their cousins fatherinlaws nephew... sheesh" We tend to be a bit guarded at times. I rarely have photo's of my girl working. I can pick taking a photo, walking, or shopping. Doing all three are too much work. This was a good one with her "checking in with me"
  19. 2 points
    PatriotM, There are some of us who believe that everyone should have healthcare and are willing to pay taxes that may help in that goal. There are others who believe that if you can afford healthcare, you get healthcare and if you can't afford it, you don't. There are proponents of either side. Any attempt to change the minds of those who think differently is almost always futile.
  20. 2 points
  21. 2 points
    Thank you all for your inspiring words and advise from your experiences. I got my confirmed diagnoses a little over a month ago and at first I thought I'm too young at 54 for this, I was suppose to be healthy and able into my 80's like my parents. I've always been a very active person and totally "on top" of everything. I started noticing a difference about 2 years ago and have been struggling to keep up with everything the same I way I always have. I kept asking myself, why do I feel so old and sluggish and why can I not do what I use to? I was beating myself up. But now that I have my diagnoses, like many others have said, it's been a relief to have answers to the "why" and after reading everyone's encourage words, I actually realized it's all OK. I think the biggest thing for me, I've finally given myself permission to slow down a little and accept I might not be able to do everything I once did and by doing this my stress level has dropped tremendously! I've decided I'm not going to work all the extra long hours, I'm going to take all my vacation time and so what if the house isn't spotless. I truly feel like I'm a happier person. Thank you Parkinson's for giving me a reason to slow down and smell the roses (if only my sense of smell was better )
  22. 1 point
    If you read my post on frustration finding PD supports that are actually accessible for young, working people, then you probably understand I’ve had to find alternatives to programs that work balance, core, strength, and stamina that fit into my schedule and that are comfortable to do. Tried yoga but for me that wasn’t enough movement. I run multiple times a week (though I’m far away from my marathon person of four years ago, sadly). Anyway, I stumbled on a program available online since there are no studios by me and it’s pretty inexpensive. The best part is that they encourage shakes!! So I could probably attend an inperson class and not feel self conscious:). It’s called Barre3 and it incorporates Pilates like movements but also light weights, lots of repetition and a ton of balance work! Been doing it for almost a year and my MDS said my exercise regime is really a good one. Every time I do a workout I think of you guys that are on my boat so figured I’d share. Hopefully this doesn’t come off as a promotional thing, as it definitely isn’t, just want to share something helping me fill a gap. Take it or lose it :).
  23. 1 point
    Dianne, I know from your having shared with us previously that your family dynamics are very difficult. I'll be praying for you and your family and your dad.
  24. 1 point
    We have found medical marijuana to be a godsend for pain. My husband takes Ethos Innovates Relief 250 (250mg CBD/5mgTHC). No you do NOT get stoned and you don't smoke it. He has had terrible pain since diagnosis and this is the only thing that allows him to function and be almost pain free most of the time. Promotes bone growth too.
  25. 1 point
    Just visited my neuro team and asked about battery replacement. They said the norm is local rather than general. If every thing is performing properly, the IPG is left in and the battery simply replaced. Quick and simple, with fast recovery.
  26. 1 point
    Good Morning! I am making some progress on decluttering my home. I've got a couple boxes full. Still ALOT to do. LAD, the only one in my home to help with this project would be DH and he's more tight fisted with stuff than I am! LOL. So in fact, he is actually a hinderance to the process. Em-have you gone to your writing course class yet? Is it for short stories or something else? Hey Dianne, How's it going? Are you doing alright? Good luck at your neuro appointment Marcia. jb, bard, pathfinder, Linda how are all of you doing? And hello there Superdecooper. Is everyone getting things done before the snow hits? I got the chicken house cleaned, heated water bucket ready to be plugged in and fresh straw put down. My darn hens have stopped laying in the house. 3 have begun laying in a pile of concrete blankets that are stored in the horse trailer and the other three have either stopped laying or they have a really good hiding place. Any one know how to get them laying back in the hen house? I have pumpkin bread baking. It smells marvelous. The recipe suggested adding raisins, so I did. I'm not sure I'm going to like raisins in my pumpkin bread but how will I know if I don't try? My son is dating a girl with a 3 year old daughter. I'm having fun thinking about and researching things to get the little girl for Christmas. We haven't had a young child around for Christmas in many years. I'm really looking forward to it. Kids just make Christmas day so much fun. It exciting to see things through their eyes. Well I've rambled on enough. Take Care Everyone.
  27. 1 point
    Today, I fill my lungs with the sweet life of morning and hope. -S
  28. 1 point
    So, no, on being thankful about this illness. But yes on being thankful for the positive changes it has inspired in your lives. I guess you are saying the level of positive activities and awareness of the joy of life has increased. you recognize how precious life is. And PD has inspired you to take chances and live the fullest life possible. Maybe those choices would not have been made without you getting sick with a progressive brain disease. I'm not there yet. I'm still in the process of getting a diagnosis but I need to keep my head up during this difficult period of life. it gives me hope knowing that other people can survive this, and even thrive. -S
  29. 1 point
    Peace, I always enjoy reading your contributions. They are so well written, and always kind. You've uplifted me at a crucial time or two when I really needed it.
  30. 1 point
    Let's see here. There's a trip to Oregon for Thanksgiving. We're staying home for Christmas. Maybe that trip to India in March-ish time frame if I don't jump jobs (slight possibility right now, but not holding my breath). Not planning any fishing trips for a while. Not a lot open that I'm interested in fishing for until spring, and what is open I'm not sure I really want to be out in the cold weather to chase them. Most likely I won't get out fishing again until March or April. I will be continuing to ride the exercise bike over the fall and winter so that in the spring/summer I can try to ride a century (100 mile bicycle ride). Memorial Day weekend is the time for the Ski to Sea race in Bellingham. I'd like to compete in either the road bike leg or kayak leg for that one. But, if another adventure comes up I'll post up about it.
  31. 1 point
    Swva - Sometimes a picture is the first and only thing you see and one does not have a "chance" to "stop" the viewing. If this was about "changing" to suit others, I could preach a sermon about killing animals for human pleasure. I simply asked that a separate thread be made, not that Stump "changes."
  32. 1 point
  33. 1 point
    Just got back from elk hunting. Will post up the full story in a day or so, but bottom line was my daughter got her first elk! Diane - butcher said hanging weight (so all muscles and bones, but no innards, skin/fur, or head) was 260lbs. That equates to around 425lbs while still walking around. Edit to add: Last year, after we were all done, we were told that dead elk float. Their hair is hollow (which I knew from my days of tying my own trout flies) and that gives them enough buoyancy to float. I can now, by personal experience, verify that they do indeed float. I'll be darned. We used that, along with a small motor, to our advantage this year in getting the elk back to the truck.
  34. 1 point
    The advice is good to write down the new symptoms and your concerns, then discuss them with his doctor. If he has been diagnosed with Parkinson's for ten years, it is not likely Lewy body dementia. It could be Parkinson's dementia. He may need a medication adjustment, his recent illness may have caused some temporary symptoms, or it might be the progression of the disease. When the doctor has all the information he will be able to sort it out for you.
  35. 1 point
    Sherrie, I learned that the symptoms I was experiencing might be due to pharmaceuticals (in my case, Zyprexa) during a class I had to take to renew my Social Work License in May of 2010. It was my understanding that drug-induced Parkinsonism is not progressive and that the symptoms might ease after I was off that medication. I was not looking for a Parkinson's diagnosis and knew nothing of PD. I didn't even see a neurologist until October 2010. I had been to a family reunion in September where several people noticed a difference in me. My daughter suggested I discuss my symptoms with my doctor. The first doctor I saw when I got home was my psychiatrist. She immediately discontinued the Zyprexa and told me to see a neurologist. He watched me for two months and when my symptoms worsened, gave me the diagnosis of idiopathic PD. Sinemet might help the residual symptoms of your Parkinsonism. Sometimes the symptoms get better over time. At least there is comfort in knowing you will not face progression. One thing I regret is following the neurologist's instructions to learn all I could about PD. I scared myself by assuming every bad thing I read would happen to me, and soon. Now nearly seven years after diagnosis, I have learned that obsessing about what might happen steals whatever joy there is in my life today. You can always post your questions and concerns in the Ask the Doctor section of the forum. Dr. Okun has helped me many times when I left an MDS appointment more confused than I was when I arrived. Dianne
  36. 1 point
  37. 1 point
    What is your connection with the organization? Bill, glad to see you posting. I haven't posted in a while. My faithful friend is great at helping me with retrieving things, but alas she doesn't remember passwords either.
  38. 1 point
    I've been a nurse for over 45 years. The "gold standard" when I began nursing was sinemet. The gold standard today is...........A cure is out there but it seems as if every time we read about a study with promise, that's the last time we hear of it. I just believe we need to take matters into our own hands, each of us responds differently and our disease course is very individualized. Exercise and attitude are my additional treatments (Azilect and Metoprolol PRN are my meds). It works for now and the future will be what it is, although I'll keep trying to make it the best for as long as possible.
  39. 1 point
    Atypical was on my plate for almost a year, so I know how you feel! It was ultimately ruled out with two things. It took a long time for me to find "my" carbidopa/levodopa dose. What "your" dose is 100% up to you- it's whatever it takes to reduce or eliminate the symptoms (to a level that you are comfortable with. There is no magic dose calculation for anyone. I got 100% of the intended effect of the C/L, and 100% of the side effects but the meds didn't last very long. Eventually, it settled into my dose being pretty big with a short duration (3 hours) so finding it took almost 6 months- 1600 mg a day of C/L, in 8 doses. . Once I had the consistent duration, they looked at how effective it was. I was still at 100% of the responsiveness to the meds and 80% of the side effects. Big doses are more common in Young Onset, and any monthly hormonal fluctuation seem to impact meds in women. Not that there is any large volume of research specific to women... If you can't establish a dose that works for you over a couple of months, you could be tested for autonomic dysfunction. That would help rule out some of the Atypicals. The testing can be less reliable in early stages of the disease, so you'd want to go to a center with lots of experience. Autonomic dysfunction evaluation is not for rookies! I was ruled out of autonomic dysfunction using the tilt table test, and the sudomotor testing.
  40. 1 point
    Big Mac, At 74 my dad was diagnosed with PD. A year later, after Mom died, I stepped into the caregiving role. Looking back I can see that he had started to show signs of dementia. Now he's been diagnosed with Lewy Body dementia. His neurologist explained that dosing the Carb-Levo is a balancing act - more of it will help with movement but will also possibly increase the hallucinations. Backing off of it can help keep hallucinations at bay but you sacrifice movement. So to answer your question, yes it could be your new normal. I don't think you can treat both problems completely; it's either or. Fortunately dad doesn't have much trouble with movement so the focus is on his mental & behavioral issues. Tammy
  41. 1 point
    Hello Dianne, I am just popping round the internet and here I am reading your post. When did you first get the wrong tubing? Maybe we have had that conversation already, but it seems like you have had that wrong sized tubing problem for a long, too too long, of a time now. You must be looking forward to November 28th date. Bless you Dianne, I hope that a good doctor gets you up and about soon. And despite the fact that even you must be having a hard time making Lemonade these days, your list of health concerns still don't emit a whine from you. Sleep well my friend,
  42. 1 point
    Good morning jb and all of you. The date for changing the tubing for my pump is November 28th. In the meantime, I'm on a very short leash because the current tubing is very short. What's been keeping me inactive recently is orthostatic hypotension. It's due to the Neupro, which was prescribed for the dystonia in my stomach. The dystonia is caused by the wrong tubing. My MDS has me on two new meds to help with the low blood pressure. If I sit up from a reclining position, I get dizzy. Sitting with my feet on the floor makes it worse. Standing up causes dangerously low blood pressure. The last two days, I've had to have someone walk me to the bathroom with a gait belt around my waist while I push my walker. It is quite inconvenient. As soon as the tube gets changed, I will go off the Neupro. I hope to be able to leave my apartment at some point. Dianne
  43. 1 point
    Good morning everyone, Hi Peace, thinking of you. Funny this, my horse when I purchased it was named Maximum Dream Maker. Of course he responds to Max and that is all I call him. Hope everyone is well. jb
  44. 1 point
    I too awake refreshed and "on" in the morning before taking any medication. It lasts an hour or two. In other words, I think that we're 'on when we should be on'.
  45. 1 point
    I spent the last six months extensively "testing" a wide range of cannabis strains. I found the best use for me is a sativa dominant for sleeping. Did not derive a noticeable benefit for any other symptoms. I now use less than half a gram (3-4 puffs) per night at bedtime. I went from an average of 6 hours to 8 hours of sleep with 4-6 hours uninterrupted, and wake refreshed without any noticeable after-effects. Extremely pleased with the results.
  46. 1 point
    Hi everyone, I was just emailed by AbbVie Pharmaceuticals concerning a Parkinson's Research Study they are conducting. AbbVie Clinical Pharmacology Research Unit (ACPRU) is currently enrolling people ages 45 to 85 for research studies for people who have been diagnosed with Parkinson's Disease. There is no cost to participate and qualified participants may be eligible to receive compensation of up to $1,500 for study participation. Study staff will determine eligibility based on study criteria. To learn more about the study and to see if you qualify, call 1-800-827-2778 or visit abbviephase1.com. For more information, call: AbbVie Pharmaceuticals 1-800-827-2778 To find more specific information on this study, visit AbbViePhase1.com ***I, Mark Comes, have no ties to AbbVie Pharmaceutical Company with respect to financial relationships, stock entitlements, support for this information, money for this post. This information was sent to me because I am a pharmacist and have signed up to be notified of new medications, research studies, and FDA and DEA information about medications.
  47. 1 point
    Thanks Linda, My hand is operating is at the intersection of annoying and interfering. Im so willing to give up coffee if it means I don’t have to be reminded about ET first thing in the morning because I almost drop my cup. I will try herbal tea for a few days and see if the near accidents go away. I also read another auggestin from someone about adjusting Microsoft Word so it doesn’t pick up extra keystrokes. I heard you can do that with a mouse too. That would be pretty helpful. I also have to check out Dragon Naturally Speaking Dictation program. It’s a speech to text program. Has anyone had any good experiences with that? Trying to put ye pieces in place to keep working while decreasing my frustration level. Right now when I shake to much I just put my phone in my pocket and do something else. Also, i saw the Emma watch and it looks cool. My neurologist suggested I try 2lbs wrist weights also. -s
  48. 1 point
    I have found you can Google just about any word and Parkinsons and there is some website linking the two.
  49. 1 point
    Thanks! Funny thing... I gave up FB for Lent and decided to try to reach out to others who may be where I was 2 years ago by posting in the forum. It has ended up helping me. Don't get me wrong. I'm not all sunshine and roses. There are times when I get downright pissed. But quitting just isn't an option for any of us! LAD
  50. 1 point
    sorry-had to do it! Made me laugh out loud!
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