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  1. 4 points
    As a person with DBS, I would definitely say yes! I have no regrets about my decision, and personally benefit greatly from it, but am aware of cases where it may not have been appropriate for others. In fact, I was recently asked by my DBS team to speak with another candidate about his concerns with the procedure. After some discussion I recommended he put off the surgery for now. But think about it ... a specialized team of doctors and therapists are assembled to evaluate and treat DBS candidates. Some of these centers are without a doubt better than others, yet in any case it is quite an expense. They know of the great possibilities and are anxious to spread their good deeds. But now, 16 years after being approved by the US FDA, more centers are competing for potential candidates. Pioneers in the field are being joined by others and they all need to show a return on investment. All while the pool of potential traditional candidates is shrinking. There is bound to be some "aggressive" players in the field looking to expand their horizons. Check out this article: The article also touches on the ethics of DBS , especially due to its psychosocial effects. I hear of many failures in this procedure and considered them myself. But I was to the point where I felt there was nothing to lose. My dyskinesia was debilitating and dystonia so bad I could only writhe in bed for hours every evening. Never mind the many other common symptoms. For some of us it is a "no brainer". Others, ?
  2. 3 points
    My son & his girlfriend did a duet..enjoy!! LAD
  3. 2 points
    AS a young person, I was never very good at holding my urine back. Small bladder I think. Fast forward to present, 11 year veteran of PD and the owner of an enlarged prostrate gland that makes it difficult to drain my little bladder and make it gladder I still have issues but I do understand it better. 1. I did have appointments and time spent in the pee clinic with an urologist who concluded that my pd twitchiness, and a bladder that doesn't draikn easily has put me in a position of urinary urgency. 2. I do ok with it. It isn't my biggest problem. 3. A lot of my urgency is in my mind, not in my pants. 4. Usually I only go to the Bathroom once a night when I sleep better. Some nights when I am more restless, or sleeping lightly I go more often. 5. Google "key in the lock syndrome" You will be surprrised by the number of people returning to thier home, who find the urge to pee grow as they unlock the door, put the groceries down, pet the dog, pull off the snowboots and run to the bathroom. 6. I find that I need to be very casual about finding a bathroom that is available for use before I make the concious decision that "OK, I have to go to the restroom." The countdown has started from that point. If I find the intended restroom is not available, whoa! The urgency status just got dialled up. 7. If my body temperasture is warm, I have better holding power, If I am cold, I can not hold back as good. A cool night is not a good night to drink cold beer around a campfire if toilet facilities are not easy to access. 8. If I am travelling, I avoid the morning coffee and I limit juice and water even though I know that dehydrating myself is not a good thing to do. But it does help the urgency thing. 9. I have some belts and zippers that are easier to use than others which can be hard to loosen off. If my fumbly fingers are victims of a low med off time compounded by a higher than usual urgency and I am doing the "gotta pee real bad right now shuffle" things can get tense. When this happens and I finally get it done, I know that I am not done. I need to relax; think about drinking cold beer while watching Niagra Falls and going through the car wash. Try to relax, relax, don't let the Restroom out of sight. Guaranteed, I will pass more water.. A tense full bladder doesn't give up easily. Its like a little encore. !0. I get by with this problem ok. I have closecalls, I usually use the bathroom when it is available when travelling even if I don't feel like I really need to. And I have worn Adult pullups when on long drives or airplane just in case. Never had to test them yet! Remember this: You are not alone, lots of people suffer this problem..
  4. 2 points
    Good Morning Everyone, It is Saturday morning. 1, Saturday used to be such a special day. Cartoons. It was the only day of the week you could get them on a country tv with a very basic attenae. It was something to look forward to. Now satelite channels flood the screens 24/7 with poorly written cartoons and I don't think kids are interested in them because they have become too common. 2. Movie theatres bring such great box office hits to the big screen. Price of admission is not too bad but the big money maker is the food. If you take three kids to the theatre and get them in for say 5 bucks a head, it will cost you 10 bucks a stomach for popcorn, a drink and skittles. Or you can be a grumpy grandpa and tell them that they should of eaten their lunch up. 3. Walt Disney was a heaven sent TV program on a Sunday evening that you loved to watch with your family. Households now with 4 tvs and 5 cell phones, 3 tablets and a huge x box setup, whatever that is, is often a household of bored people in different rooms throughout the 2800 sq. ft. house, surfing around looking for something to watch and it isn't "Poor Benji" 4. I am watching FIFA football on tv, Live from Russia. Pretty cool. They are great athletes almost as skilled as Canadian hockey players but here is one thing I hate. Falling down, acting wounded and stopping the play. I saw one player here today scream in pain and fall down demanding a penalty before he even was bumped by another football player. But I have developed a liking for the game and they certainly are very athletic and skilled players. just damn poor Actors. 5. We have 5 birdfeeders. We watched a red headed woodpecker stick its tongue into the hummingbird feeder and suck up the sugar water. Never saw that before. We have lots of cats this year and before there is an international trade tarriff placed on them, I could ship one to anyone needing a good barn cat. They like to sit under the bird feeders and make the birds nervous. Meanwhile the cats are afraid of our dog who keeps the cats excercised. And the dog is ever watchful of the cats who are as big as he is and outnumber the poor little fella. The birds fly away in fear of the cats , who haunt the dog .Why don't I keep the cats out of the yard, Cause they keep down the number of chipmunkeys that cleanout the birdfeeders every chance they get. And it has been proven that the chipmunkeys are smarter than me when it comes to trying to keep them out of the sunflower seeds. 6. Soon I will have waited 6 weeks patiently , like a young boy watching his grandpa slowly carry an ice cream cone to him, for the swelling to go down and the dbs to startup. Soon Grasshopper, Soon it will be time for you to go, Go to Toronto and get powered up. Is not it more noble to wait patiently Grasshopper for the cure to be held back and you learn how to be grateful for the heat of the sun and the pull of the moon and the grains of sand upon the beach, whose numbers pale in the light opf the number of stars in the heavens above. Now Grasshopper, quickly as you can, snatch the pebbles from my hand. Ah, I win again. It is good to be the master. Go wait a bit more Grasshopper and reflect upon all of this. (and who did not like to watch Kung Fu back in the day.?) 7. The yellow team just scored. They do a little victory dance, they jump up into the air together and collide, banging hips together and thier arms entwine the 4 men together, but one man is bumped a bit hard. As they fall to the ground he screams foul, you fowl. He rolls and buries his face to the ground and the officials wonder if that is a yellow card or a free kick in seeing as all persons involved are on the same team. 8. I am not being whiny and poor me but my shoulders are still sore with rotator cuff issues. I get them working good, free and easy through the daylight hours but most mornings I awaken with them frozen and I have to slowly get them rotating again. 9. Our Prime minister got the bills passed through the Senate to legalize pot, or rather decriminalize pot in Canada. Medicinal pot already was ok. But now anyone can have 4 plants at home in your herb patch, there is no roadside test for it if you are driving higher than a kite, and I think Mr.Treaudeau will rue the day this got done. 10. We watched "Awakenings" on tv one night this week. With Robin Williiams and Robert DeNero. Good movie. Doctor Sacks (true story) realizes that a new chemical known as L -Dopa could help his patients. That movie could be about us, well it was. I felt it inside my soul. Ok. Gotta go, Saturday morning cartoons, you know... Be strong everybody. PD is not for wimps. And keep that fist to the sky! jb.
  5. 1 point
    I just recently took a hiking trip and used trekking poles for the first time. They really helped with arm swing, balance, and gait. They also saved my butt in what could have been a very nasty fall down a mountain side. I used the Alpine Summit Explorer Edition trekking poles. They come with several accessory tips for walking on different surfaces, have cork handles that absorb sweat, have fliplock adjustments, etc. Excellent customer service, too. You can buy them on Amazon for $39.95 or direct from the company with free shipping. Check them out. https://www.alpinesummitoutdoors.com/collections/trekking-poles https://www.amazon.com/Premium-Aluminum-Trekking-Anti-Shock-Walking/dp/B073NRYBKN/ref=lp_15756750011_1_1?srs=15756750011&ie=UTF8&qid=1530111066&sr=8-1 Kevin
  6. 1 point
    TURNING POINT with Dr. David Jeremiah Tuesday, June 26 Lord, You Know Lean not on your own understanding. Proverbs 3:5 “There are things we know we know,” Donald Rumsfeld said. “We also know there are known unknowns; that is to say, we know there are some things we do not know. But there are also unknown unknowns—the ones we don’t know we don’t know… it is the latter category that tend to be the difficult ones.” Recommended Reading: Proverbs 3:1-6 When it comes to the ways of God, there is much we do not know. When God asked Ezekiel if the dry bones could live, Ezekiel simply said, “Lord God, You know” (Ezekiel 37:3). When the heavenly being asked John, “Who are these arrayed in white robes?” in Revelation 7:13, John replied, “Sir, you know.” Sometimes we need to say, “Lord, You know.” The Bible tells us not to lean on our own understanding, which means we shouldn’t be too confident in our ability to figure everything out. Knowing what we don’t know is the beginning of humility, and humility is a precursor to wisdom. If you’re struggling to understand a particular “why” or “what if” or “if only” in your life, give it to God and trust Him with all your heart. Learn to say, “Lord, You know.” The answers we need will be found, not in explaining our circumstances, but in understanding God’s character. Bryan Chapell, in The Hardest Sermons You’ll Ever Have to Preach
  7. 1 point
    Another Sunday ... I fill my lungs with the sweet life of morning and hope.
  8. 1 point
    Thought for today: Whether you give a man a fish or teach him how to fish, your job hasn’t changed. Your job is fish. It is not to make value judgments about whether the person is deserving of fish. It is not to criticize the person for not knowing how to fish already. And it is certainly not your job to stand around and debate the relative efficacy of fish charity vs. fish education while the person in front of you goes hungry. This person is your fellow human. Your job is fish. —author unknown.
  9. 1 point
    Good Morning everyone! It isa beautiful day in Southern Ontario today. Actually, I got to see all of the morning and the sunrise on this Summer Solstice. It is a little cooler this morning, following hard on the heels of some humid days. The grass is green and my lawn is nicely mowed thanks to Imy brother who came up to my house yesterday to do it. It is a busy time of the year for me, but I need to stay away from the work until the surgeon clears me. Im only allowed to lift about 5 pounds until then. Gee, that amounts to only a very good sandwich. I am needing to get out and excercise more because when I sit around, my muscles sort get stuck, but I need to sit around more and rest some sore muscles cause when I do too much, my muscles get sore. Life is busy. Have good days everyone jb .
  10. 1 point
    Hi adams234, thanks you for the kind invitation...I decline! first question: can I give my membership invitation back, no? DRats, what is this the Mafia? Hotel California? 😀 i am dealing with this, but I am going to have questions on how to stay strong and be positive, like LAD says I should do. For now, thanks everyone for the encouragement. -S
  11. 1 point
    Hope all goes well for your daughter dianne..thinking of you em
  12. 1 point
    Hi Johnny, There may be something to your concern. At my 5 year mark, I was asked if I would consider DBS. My doctor wanted to put in a referral for an evaluation. I responded that the meds seemed to work well for me and that I hoped I would never have to face DBS but also wouldn't rule it out down the road. I also wonder about DATscans - are they being over sold too? Seems like a simple levodopa challenge is an effective diagnostic tool. Better yet, time will reveal the answer for most people. Glad you had a nice Father's Day. Gardener
  13. 1 point
    Prayers to your family! Stay strong & stay hopeful!! Lori
  14. 1 point
    OH my, what kind of magic pill is this? Started taking Rytary this morning. The tremor in my right hand is mostly slowed down, almost to the point of gone!
  15. 1 point
    My dear husband was diagnose at age 72. We suspected something not right about two years earlier. When he went for a physical he had absolutely no problems, all vitals right on, we asked then why he had tremors, was noticing difficult in walking. Doctor basically at that time brushed it off. Two years later he was diagnosed. He passed away this January and it was two years before that his speech, had to have a wheelchair, and memory started to progress. Again all his vitals BP etc was right on. This year it rapidly started to progress, refused eating, completely shut down. New Years Day I went to see him which I went every day, he was smiling we had some drinks and 10 days later he completely shut down. He died the 28th. Cause Thrive refused to eat, and Parkinson's. Kidneys were the first to shut down. So he had a short time as he was in much pain was on morphine and died a peaceful death. Being a avid reader and learning everything I could on PD being his caretaker, it appears what I have read that PD can progress much faster than someone developing PD in Younger years. Miss him terribly but so grateful he did not suffer long.
  16. 1 point
    Good Morning Everyone. I was off for a few weeks of road trip/camping Goals for 2018/19. Buy Van Grab a kiddo for a week and do a road trip. So one kiddo down; three more to go Dinner over a stove, with my faithful friend watching. A van big enough to not only sleep in, but do some morning stretches
  17. 1 point
    I have the same reaction to sinemet at night. I was unable to sleep for a year until i realized that it wasnt parkinsons that kept me from sleeping but sinemet. Now i try to avoid taking sinemet after 3 pm and i sleep much better
  18. 1 point
    I may have posted this before... sorry. I was using it in my blog and felt the need to post it. LAD
  19. 1 point
    Through the rawness of this story there is a sweetness at the end that is very touching. Linda HE COMES, THE OLD MAN A short story lesson on respect for the aged John R. Erickson is not only the prolific author of 70 beloved Hank the Cowdog books but short stories as well. WORLD Digital offers the world premiere of one he wrote 25 years ago but never published. Warning: Get your kleenx out. Linda He comes, the old man. I hear the sound of his pickup breaking the silence of morning. He stops in front of the saddle shed and turns off the motor. The door opens. He steps out and starts this way. He stops, frowns, brushes a hand over the top of his head. He goes back to the pickup for his hat. He forgets things. He comes through the gate, closes it, hooks the chain back on the nail. He coughs and looks up at the elm tree whose limbs grow out across the corral. The leaves are beginning to turn. While he’s looking up, his right hand strays down to his knee and rubs it. It’s an unconscious gesture, an old hand talking to an old knee. It’s the dampness. My bones hurt too. Nothing terrible, just a lot of small complaints. There was a time when I didn’t know the meaning of pain, but we learn. He opens the saddle shed door and turns on the light, sets one boot on the floor, and pulls himself up, making a grunting sound. It’s a long step that gets longer every year. Inside, he squints at the east wall, pulls a pair of glasses out of his jacket pocket, and looks again. There is a line of sixteen penny nails across the east wall. From each nail hangs a bridle and above each bridle is a name. He picks the one marked “Rusty.” He slips the headstall into the crook of his arm, grunts down the long step, opens the gate that leads into the east pen, and comes toward me. My ears go up and I begin edging away. He stops and I stop, and for moment we glare at each other. In his pale blue eyes, there’s a little of the old fire. I look back at him, and maybe there’s a little of the old fire left in me. He comes to me and I move away. His voice cracks the silence. “Whoa, you knothead!” I trot around the pen. Oh, I know he’ll catch me. He always does. Why play the game if we know the outcome? I don’t know. That’s just the way we’ve always done it. You lose track of why after a while. That’s just the way we’ve always done it. You lose track of why after a while. He shouts. I run, but not as far or as hard as I once did. He gets me in a corner and levels a finger at me. “Now whoa!” I stop, my head frozen in the air, and he comes, limping a bit on that right leg. I remember the day he got that limp. When was it, Charlie? Could it have been … sixteen years ago? Eighteen? The years slip by. I was a three‑year old colt, just broke, knew everything about everything, tough as a tree and about as smart. You had been training me to rope, remember? We’d worked on it for a couple of weeks. I thought I knew it all, Charlie, and so did you. We took chances. We had started roping small calves and had worked up to yearling stuff. I was a little frightened the first time the slack went out of the rope and I felt that jerk on the cinches. But I saw what I could do to a big steer and … I liked it! Together, Charlie, we could do just about anything and get away with it. We were kings! I could outrun anything on four legs and you could stick a loop on it. I could hold it down and you could tie three legs with a pigging string. Weren’t we a pair? She was a big straight‑barreled cow that probably hadn’t raised a calf in two years. She was as fat as mud and outweighed me by two hundred pounds, but we didn’t care. When she wouldn’t drive to the house, you unlatched your rope. You gave me the reins and spurs and whispered, “Get ’er!” That’s all it took. You stood up in the stirrups and pitched a loop on her horns. But she was too much for me, Charlie. You were tied solid to the horn with a nylon rope. I was young and stupid, but you should have known better. She jerked me down. My right hip struck a rock and I rolled over your knee. That’s where these aches came from. So here we are again, you and I. You slip the headstall over my ears and fasten the throatlatch. You lead me through the gate and drop my reins in front of the saddle shed door. I suppose you think I’ll stand here, ground tied, so that you won’t have to carry the saddle so far. There was a time when you wouldn’t have tried that, because I would have walked off. There was nothing personal about it. Sometimes I just don’t want to be bothered. Today I’ll stand and be nice. Tomorrow? No promises. I might be feeling naughty. Charlie, you’ve been saddling horses for seventy years and you still jerk the front cinch down to the last hole. First thing in the morning, you try to cut a horse in half. “Whoa, stand still!” When you learn to give a little slack in the morning, I’ll learn to stand still. Now you’re coming out of the shed with hoof nippers. Are you kidding? You are seventy‑five years old! It’ll take you half an hour to trim one hoof, and in the meantime I’m supposed to stand on three legs? “Come on, horse, give me a hoof.” Okay, take it. Make a fool of yourself, what do I care? You whittle and trim. You drop the hoof. You’re slow to straighten up, and when you do, your face is gray. You slump against my neck. Charlie? You catch your breath and lick your lips and pitch the nippers back into the saddle shed. “Trim your own danged feet.” You lead me out the gate. The sun is up now, sparkling on the heavy dew that covers everything. Walking through the grass, you get your boots wet up to the cuff of your jeans. Did you know that you bend forward at the waist when you walk? You lead me over to a little rise in the ground, and pause a moment, looking me over. “You ain’t holding your flesh.” Neither are you, Charlie. You step up on the little rise, guide your boot into the stirrup, grab the horn with both hands, take a deep breath, press your lips together, grunt and pull and fall into the saddle. You used to laugh at a man who mounted a horse that way, “like an old washer woman.” Charlie, you dropped one rein when you were climbing on. Ten years ago … You used to laugh at a man who mounted a horse that way, “like an old washer woman.” We go down the hill and wade across the creek. I try to stop for a drink but you jerk my head up and give me a poke with the spurs. You never know until you try. We cross the creek and climb the hill on the other side. The warm sun is meeting the damp ground, causing little clouds of steam to rise. The trees along the creek are taking on their fall colors. Autumn sunlight and autumn shadows. Autumn colors and autumn smells. I hear you whisper, “Lord, what a morning!” We hit a jog‑trot across the pasture. I’m feeling saucy. There’s something about that crisp morning air. I toss my head and hump up a few times. “Son, if you dump me … ” Don’t worry, Charlie. It just crossed my mind, that’s all. We find some cattle near the place where the creek bends around to the west. We ride around them, then through them several times. I can’t see your face but I know what it looks like. Your eyes are drawn down to a squint and you’ve pulled your lips tight over to one side. Checking those cattle. You never get tired of it, do you? Charlie, do you remember … what are you doing? The bald‑faced heifer? I’m not sure, Charlie. My hip … She’s a troublemaker. Look at the way she holds her head. She has that look in her eyes. We used to eat her kind for breakfast. If it took speed, we gave them speed. If it took quick feet, we gave them quick feet. If it took brute strength, we had plenty of it. But Charlie … See? I told you. She cut back on me. I can’t make those sharp turns. Charlie, no! Not the rope! Has you brain gone to mush? Look at yourself, look at what you’re riding. This is crazy, Charlie. Do you hear me? THIS IS CRAZY! Okay, Charlie. One more time. I’ll do it for you, but remember what I said. You’re an old fool. She runs. The wind is in my face. I hear the blood roaring through my ears and see the ground flying beneath my hooves and feel my muscles reaching deep inside. I can’t resist. We were something special, weren’t we, Charlie? You and I, knocking a hole in the breeze. No, I can’t give it up, any more than you can. Two old fools, Charlie, two old fools. I can’t catch her. I’m sorry. My lungs are on fire. I can’t feel my legs any more. My hip … Charlie, something … it’s all a blur, my legs and the sky and flashes of yellow and orange leaves, all spinning. I lie on the ground and blink my eyes against the sun. The spinning has stopped. I hear my lungs fighting for air. I lift my head and fold my front legs under me and push up. Everything hurts. I stand up and shake myself and hear the jingle of fence staples in the saddle bags. I take a couple of steps and oh! Same old hip. Charlie? I see him there, lying face‑down in the grass. There are still a few green sprigs close to the ground, but mostly it’s dead and brown and ready for winter. His hat lies off to the right and a soft north wind plays with the long wisps of hair that he combs over his bald spot. I go to him, holding my head up to keep from stepping on the reins. I look down at him, a set of clothes lying in the grass. It wasn’t my fault, Charlie. I gave you my best. I always gave you my best, even when we fought and had our bad times. But you asked for too much. You should have known better. Now look what you’ve done. I bend my head down and nuzzle his shirt, and for a moment his smells send me spiraling back. There were times when I hated you, Charlie, I hated your smell of bacon and tobacco and sweat. You were always pushing, making me give more than I wanted to give. Did his hand move? He pushes himself up on his elbows. He groans and climbs up to a sitting position. He rubs his knee with both hands and his eyes rise to meet mine. He touches me on the nose. “I lost my hat.” He looks around, crawls to his hat, and sets it on his head. It looks silly, all cockeyed and bent. He pushes himself up and tests his leg. He reaches for the saddle horn to hold himself up. There was a time, Charlie, when I wouldn’t have stood around waiting for you. I would have gone back to the barn. Today, I’ll wait. Tomorrow? No promises. Well, climb on. I’ll take us home. We take it slow and easy. Down along the creek, the gold and yellow leaves clatter in a sharp north wind. It’s getting cold. Winter is coming. He comes, the old man. He comes for both of us, Charlie, but not today. John R. Erickson John is the author of the Hank the Cowdog book series. He and his wife, Kris, live on their cattle ranch near Perryton, Texas. Read More from this Writer
  20. 1 point
    This is such a fun, fun video to watch. Hey Ginger/LAD/Muffet--You and your DH, Fred, are in it. (Did you two time travel?)
  21. 1 point
    Hi, I had dbs August, 2015. Definitely helped with tremors and dyskinesias. I have struggled ever since, however, to get meds right. It's a constant problem. Also, I sleep far more than before. Just wondering what others have experienced. Thanks in advance!
  22. 1 point
    Shakes, I edited my comment due to the misunderstanding. Our wives have a lot to deal with and I'm sure your wife has some extra stress with young children. One thing I have noted in my life is that most people you interact with are oblivious to your problems because they are focused on their own. I lose and get stuck on words a lot. It can be embarrassing when your having a technical discussion with a peer and can't find the proper word. Some people fill in the blank for me and I don't even think they realized they are helping me. I have not publicly disclosed that I have PD. Dave
  23. 1 point
    Actually, a pretty good post, IMO. I could have written it myself. I was extremely angered when my wife kept mentioning how her social life has been ruined by my lack of interest in what we used to enjoy together. I didn't ask for the change in out social priorities, and I certainly don't like it; but I considered it a guilt trip on her part. Was I being selfish? Maybe, but marriage is a two-way street. I need to understand her concerns; but she needs to understand that my mind is now different than before. I'm actually appalled by some of the responses here. I don't think you're a moron, and I don't think that you have to be "nicer to her" so she doesn't bail on you. You are reacting to negative cues like any other normal person would. Talk it out; do research together; and find common ground, if possible. If she doesn't attend all of your Dr appointments; bring her along and talk to the Doc! I think my wife and I finally worked through it, but it took a while. Hopefully, you can as well Thanks for posting!
  24. 1 point
    Your wife is under tremendous stress but is still relatively young and not the one with the disease. I would be nicer to her if I were you. She has every reason to bail on you and could do it. I understand you are confused and scared about the future but keep in mind that you are not the only one this is affecting. Please check your meds with your doctor. Sometimes too much can make your mind go blank. It is so tough to have this happen to anyone. Nothing will be the same ever again and what you planned on will change now. Hang in there.
  25. 1 point
    NicoleZ- thanks for the advice. I forgot to say I'm already on sinemet ER. Sorry about that . I am planning to add amantadine and will post of that helps.
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