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  1. 8 likes
    Welcome! Here are a couple of things that help me come to grips with Parkinson's. You may not find them comforting or helpful so please disregard if that is so. The day after I received my diagnosis I reminded myself that I don't have anything that I didn't have the day before and the day before that, I just didn't know what it was. If I could handle yesterday then it is most likely I can handle today and tomorrow. Don't cross that bridge before you come to it. It is so easy to dwell on all the possible and often frightening things about this disease. But, remember no one knows what tomorrow will bring. Yes, I might develop a new symptom but I might also get in a car accident, get killed and consequently never develop any other symptoms. There might also be new treatments. Life is a crap shoot. We just don't know what will happen. We might want to plan for some of the possible negative things, but there is no point in dwelling on something that may not even happen. Sometimes those around us are very concerned and mourn some of the losses they see in our health and wellbeing. It is also tempting to feel sorry for ourselves and start thinking that no one else has problems. No one gets through this life alive! We all must face mortality. Hubby, don't worry so much about me as I might not be the first one to go. Let's make the most of today - no premature mourning, there is enough time to mourn tomorrow. Start making a bucket list and fill it with both the bold and daring as well as the simple. Go on that once in a lifetime trip but there is also a lot of satisfaction in some of the more simple things, such as attending a grandson's ballgame or attending a granddaughter's graduation. It is good to reflect upon the number of things that have been checked off the list and contemplate new things to add. In other words don't forget to keep living. It is hard if not impossible to always feel positive - so don't try. It's ok to take a break and vent, scream, cuss, have a good old tantrum and cry. Just be sure not to hurt the innocent while indulging yourself. Remember you are dealing with the loss of dopamine which not only affects our movement but emotions as well. Feeling down is not a sign of weakness but a symptom of the disease itself. See your doctor often and don't be afraid to be your own advocate or ask a loved one to assist in this regard. Life goes on. All we can really do is make the best with what we've got.
  2. 6 likes
    We had our annual Golden Retriever Rescue group swim this weekend. Storms held off, but 110 Golden Retrievers and 117 people it was a great turn out. We took the harness off my Golden, who is my Service Dog, and told her to go play! She was swimming almost non-stop. Few hundred tennis balls, but she would get a sandy one and come up to the ball bucket and drop it in and get a new one!
  3. 6 likes
    You would certainly THINK that each one of us fighting Parkinson's has enough on their own plate to concern themselves with, that they wouldn't feel the need to interfere with how someone else is coping with, and/or fighting PD in their own way. But alas, there's always that obnoxious 10% of ANY population....whether it's the diseased, sports stars, celebrities, police officers, politicians, etc., that feel a sick compulsion to tear down someone else's castle. History shows, however, that these type people usually self-destruct on their own. So, let them wallow in their own bitterness and nastiness....they CERTAINLY aren't helping themselves do any better with their own PD. (Personally, I hope it ramps up their symptoms). Linda, just start a new thread. If it also ends up shut down, start another.
  4. 6 likes
    Hello, Gulfvet -- Here is my contribution. It was when I was playing the piano that I first suspected I had a neurological problem. By the time I got my diagnosis, I could barely play at all because of my lack of manual coordination. Having studied classical piano for more than ten years, I was sad to lose that beautiful and rewarding pastime. With medication started and some improvement observable, I tried practicing again. It was pretty discouraging at first. But as the medications grew more and more effective in fighting symptoms, I practiced more often. Today I could never play on a concert stage, to be sure, but I can enjoy playing pieces of music that I never expected to play again! (A few examples are Chopin's "Fantaisie Impromptu in C# minor," two Rachmaninov preludes, Mendelssohn's "Rondo Capriccioso," and Chopin's "Berceuse.")
  5. 5 likes
  6. 5 likes
    1) Explain parkinsonism vs Parkinson's. What symptoms do I have (or don't have) that make it different? 2) Could it be MS, since lesions show on the MRI? 3) What is typical for progression? What symptoms come first, and what can I expect going forward? 4) What are the obvious symptoms, and what are the non-motor symptoms? (i.e. depression, apathy, confusion...) 5) There is evidence that some people may exaggerate symptoms subconsciously. Make a list of symptoms you can't fake, in case they decide to dismiss your initial diagnosis, and discuss them in detail. They call it "giveaway" on some motor and strength tests. I had a neurologist (non-MDS) say early on that I had giveaway. I had to look it up after I saw the post-appointment notes. You obviously don't want PD, but the mind is a crazy thing if you're convinced you have PD... In hindsight, I wish I could have asked him whether my confirmed sleep apnea and REM Behavior Disorder were fake. Or if I intentionally wet the bed with my incontinence. MDS's are smart and they should be trained to see the differences. No need to exaggerate, just be yourself... Good luck to you! ,
  7. 5 likes
    Good Morning, I hope that everyone had a good weekend, a good nites sleep and has ideas for a good week . Yesterday, my Mom came out to the Farm from the retirement Manor for Mothers day. She is 88, needs to use her walker, but is ready to go anywheres. I have 3 brothers and 2 sisters with spouses and kids,and some grandkids that were coming for lunch. Some of my cousins that live nearby came as well. Everyone brought salads and butter tarts, cheese cake and the usual assortment of summertime food. I cooked some pork loin roasts for sandwiches the night before. I still had lots to do to get ready for the 25 plus people coming for lunch when I got up Sunday morning. Vacuuming, clean the bathrooms, get myself cleaned up, put the extra leaves in the dining table, slice the meat and all that stuff. I used to be able to fly through a list of those things. A 5 minute shower use to take me only 3 minutes. I could vacuum with one hand and dust the cabinets with the other. Unload the dishwasher, and fill pickles dishes at the same time. But not now. I realized that dragging that unwelcome, leeching companion named Parkinson that has been riding my back for the last 10 years is causing me trouble. He is getting heavier, my back gets sore, my arms sometimes feel like lead, My feet drag across the floor like I was wading through waist high molasses. I was up at 7:00 to finish preparing, People would be arriving at high noon. I said to myself, "Self, just relax. What gets done, gets done. It is just family, the food will get served, Everything will be fine" I was running the vacuuum with short pushes and pulls, one eye on the clock, and tottering around, wondering if I really took pills this morning when my Sister from next door came in. An angel to my rescue at about 10:30. She, I often call her St. Susie, soon had me on track to finish things needing to be done. Instead of skittering from job to job with no accomplishment. She took quick and efficient steps as she always could, and soon had the kitchen stuff organised, table set and we were ready when people started to arrive. I swear, she could organise violent rioters in the street into a Sunday School Picnic. I think everyone had a good day, Everyone got filled up with yummy food. There was still a dozen people stayed for supper of leftovers and a big feed of asparagus which quickly disappeared. I even had leftover cheescake for breakfast today. Yesterday reinforced two things that I already knew: One being that my parkinsons symptoms are more pronounced and stress makes them worse to the point of freezing up. The faster I go, the slower I am. And second, but first, I am lucky to have grown up and lived with my own family within a bigger family that has always been close and supportive of each other. I hope everyone has a good day today and can pull some contentment out of this trainride called Life: with its delays, detours, unmarked stations, speeding downhill runaways clinging onto tight bends, dark tunnels, high trestle bridges over vast gorges, and slowly chugging uphill tracks. But always with new views and outlooks, challenges and rewards: travelling this railroad, knowing where you have been, wondering whats around the next bend. jb
  8. 5 likes
    The rocket thundered on takeoff from ``other places``, or was it Outer Spaces, picked up shuttles that clicked onto our Rocket from other galaxies, skimmed through Milky Ways, Black Holes and Time Warps. The online show was a new sitcom produced by a Miss Feisty Folder and proved very interesting. The flight was ``Out of this`World``. Pun intended. Very modern it was, But with very little ceremony they prepared me for exit and my return Home and I was ejected out of the Air Canada Rocket by an older than me gentleman, a former WW 2 Air Force Crewman, a bomb aimer I believe he may of been, who calculated wind drift, our Mach 7 ground speed my weight and the heftiness of my carry on luggage that I clutched,(hoping he wouldn`t discover my Trail Mix raisins and peanuts from some other stratosphere), and pushed me out the Arriving Somewhere Rocket Exit Tube as we passed over Kilkenny on the next orbit of the earth. I fell, the chutes opened, I drifted, I saw land, I saw ocean, flooded rivers and cars and cows and people and landed in my backyard. The horse knickered for a bale of hay and the dog needed out to pee. It was nice to get home.
  9. 5 likes
    Had a PD -0 ...ME - 1 moment today hiked a trail to incredible lookout today!
  10. 5 likes
    The Caregiver’s Reminders There’s sixty hours of chores, To complete in twenty-four. There is never enough time, To rid the bathtub of its grime. There’s tons and tons of weight to lift. Does this need washing? It passed the sniff. And If I have to make one more call, I’ll smash my head against the wall! I’m pretty sure sometime today a shower was to be taken, But my problem is I’m not sure whose, I think it’s mine- am I mistaken? There’s a clock on the wall that says it’s five past eleven, It can’t possibly be? The last time that I glanced at it, it wasn’t even seven! There are questions that I have to ask my higher power. I’ll demand answers at the church. Perhaps God’s hiding in the tower? Where are you God? I want to know when it is 4 am, If this is something meant to be I can not see the plan. “Where am I?” God smiles back “I’m in every act of love,” “In laundry, in a visit, or when you help them find a glove”. I have entrusted you my child with TWO of my beloved kids, To care for you, yourself and another one. Yes I did! To be my hands, and to hold theirs until their time is ended, And then to let them go knowing where they are headed is simply splendid. I’ve given you an honor that’s so hard to recognize, But if you take a moment to look in your loved ones eyes… You’ll see the bitty baby that came to save us all, For when you serve the least of these, you serve me as well. Sooner than you think, this season will be in the past, And you’ll be separated from them, until I call you home at last. Still, child I know you’re weary, you’re stressed, I know it’s true, And at times it feels like I have completely forgotten you. So when you speak to me, you’re welcome to yell, to scream, toSHOUT! Just be sure to take a moment remembering what this lifetimes all about… …the love that I showed you when I hung upon a tree… …Kid you learned that lesson well, as I can surely see. March, 6th 2017
  11. 5 likes
    Check these exercises for hands
  12. 4 likes
    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!
  13. 4 likes
    Bluemoon, Welcome. I was diagnosed at age 35 almost 3 years ago. I understand how you feel and what you thoughts are. I took me a good year before I could honestly say that I had accepted what was happening to me. Now 2.5 years later I am happier now than I have ever been. The biggest thing is don't stop anything until you have had a chance to work with your new reality for awhile. Just because you finally have a label for the problems you have been noticing does not change the fact you have been coping with those problems for many months or even years before now. This disease is slow progressing. Trust me you have time to processes and change you mind set before you make any quick decisions. For now maintain a healthy diet, keep you fiber up so you can keep your bowl regular. Keep active and exercise when ever possible. It helps and make a big difference. Don't let the PD monster kill your entire future. It is still your future. It just might not be the way we thought it would be. Take time, reflect on where you have been and where you want to be. You will still get there. For me researching treatment and getting to know this disease intimately has really helped me decide when and what meds I want to take. There will be hurdles. Just like your past there were hurdles you had to overcome. Some tougher than others. Celebrate those accomplishments daily. Every morning I wake up and my legs are stiff, my feet are hurting and my head wants to pull down to my right shoulder. I slowly stretch, slip on my clothes, hobble down the stairs and let the dog out. As the dog is doing her business I take a moment and celibate the fact that I did all that without taking my first dose of meds. Every time I do something that takes a lot of fine motor skill and concentration I celebrate that I was able to do it. It sound cheesy but the more moments you can find to be happy the happier you will be. Feel free to contact me if you need anything Sorry you had to join our club but glad you found us. Blessings Adam
  14. 4 likes
    That always has seemed to be the problem: we live in a world where half the people think the only way to get what they want—they call this the common good-- is to use the force of Government to extort compliance from the other half who view their solutions and tactics as counterproductive and an attack on personal freedoms. It amazes me how your Democratic party can claim moral righteousness on so many issues and at the same time deny the humanity of half the American people. Yes, it’s shameful for a country not to take care of the truly needy but it’s immoral not to distinguish those who can’t take care of themselves from those who won’t. Adding insult, your “Party’s” continual belittling and demonization of anyone who opposes them. Your characterization of our leadership as being chaotic and lead by “whim” simply demonstrates your unwillingness or incapability to understand what they are doing. If your “party” truly wants things to change for the better, they need to entertain the idea that the old way of doing things is only going to result in more of the same old results and that introducing meaningful change, although uncomfortable is only part of the growing process. What world would you rather have your children inherit: one dominated by convoluted Government regulations designed to benefit big corporations, bureaucrats, and special interests or one of self-determination where citizens willfully look after the welfare of each other? I personally think that many Democrats are acting out of self-interest or have so little faith in the humanity of their fellow Americans that they prefer the iron fist over willful cooperation. Where does it end—you did say “healthcare is just one of our struggles”—if forced to comply with the whim of my neighbor at what point is he my Master? Vote no on intrusive Government control.
  15. 4 likes
    And Good morning tonite. Hope everyone is having a good week. Rather, had a good week. This is Friday morning isn't it. I just wanted to catch up on some replies and comments. The Count..I like your sign in name. Were you a big fan of the Muppets per chance? Azilect......I was on it. Very e$pen$ive and didn't seem to do much for me. But drugs work different for different people. Good Luck with it. And I am more emotional now than I was. Parkinsons, drugs, older, I don't know. Lad., you like slogans and such. A long time ago, we had a thread about what we would put on T shirts for Parkys . I wonder if I could find it again. You like to go hiking. When you stood on top of that mountain, did you sing the Rocky theme song to yourself? Twitchy M and Linda, sometimes when I run into someone in town and they say , oh you are looking pretty good (healthy they mean), I think to myself yeah, but you should of seen me before I felt good enough to drive in here. And like a CinderFella, there is a time constraint and I better be home before these damn pills wear off. Hi Serenity. Feel free to post on this thread whenever you want to. Feisty Folder, your evolving television production is very interesting. Tom, I'm glad that you are not getting washed away with the storms in Texas that we hear about and see on the news at night. And that is a lot of dogs. Do they all get along with each other? Hi #57 from Wisconsin. Dianne, I am glad to see you on the board. I hope you are feeling more comfy. FF, you have a sweet and Tender relationship with your Mom I am thinking. TM, you will love BC. Right Bard? And EM, I think I saw you talking to your neighbour and I did wave to you and tossed a litre of syrup to you. I think it landed in Ireland. Hmm. Wonder if Lucy picked it up... Ella, its the price of gas and the low Canadian dollar that restricts me from the USA food truck market. That and the protective trade barriers and pancake protectionists and syrup sanctions and subsidies. Its a real waffle war going on there. And Dianne again, hope you win your battles with pain, doctors, landlords and government. And then, the hour getting late, I selected a sleeping pod that was designed to look like an old stage coach of the west. I set the timer for 6 hours and climbed up into it and pulled the door shut. Photo strips of the Wild West played on the wall to create the illusion that I was actually moving. Or was I really? The mini bar was actually a mini Walgreens and there was a full selection of Parky medications. I decided on a couple Mellow Yellow Levadopas and washed them down with a drink from a bottle that said Rotgut Whiskey but I knew it was really just orange juice. I adjusted the sound track of a six horse team galloping down a rocky road with a teamster whistling out to them and geeing and hawing on the reins that made slapping sounds over the rhythm of 24 steel horse shoes striking the flinty road while another voice, that would of belonged to the guy who would be riding shotgun, sung "Get Along Little Doggies". I settled in for a nice sleep on the horse hair cushioned bench. It had a massage feature so I thought what the heck and pushed in a couple coins and set the movement for "Realistic Stage Coach Ride" but then reduced it back to the "Let the Horses Walk While I Sleep" setting after falling out of the bed to the floor a couple times and getting my Roy Rogers pyjamas all dusty. I ended up sleeping good, but I awoke in some place called Abilene when the timer went off and I don't even know where that is. Now what?
  16. 4 likes
    Everything in life involves trade offs. Meds for PD are no exception. Ive been taking carbidopa/levodopa since my Dx 19 months ago. Only side effect since then was daytime sleepiness. So I switched from the regular instant release (often called Sinemet) to an extended release version (Rytary). Same medication, just different rate of release. I feel like I did 5 years ago as a result. However I know that the trade off is a high probability of dyskenisia (bad movements) at some point in the future. However, the latest research shows that you probably aren't saving yourself much if anything by delaying those meds. It is the total dose of levodopa that causes that side effect more so than duration of taking it. There are other meds you can try too. Primarily the dopamine agonists like Requip and Mirapex. However those have their own risks, including impulse control disorders, and sleep attacks (suddenly falling asleep when that is inappropriate like while at work or driving). Some on here choose to not medicate at first. For them exercise is a key part of fighting the disease, as it really should be even if you are taking meds. It will boil down to whether the symptoms are more bothersome for you than the risks of the side effects. But the meds are not something to fear, just something to consider with deliberation.
  17. 4 likes
    Excellent question, great responses. I like it when people, especially ones I know, ask detailed questions, either about PD in general, or my PD specifically. I really don't mind answering questions as I'm happy to educate people. Sometimes, things are hard to explain, but it's still ok because I figure the challenge is good for maintaining my cognitive function. Not many people ask, though. Perhaps they think I don't want to talk about it. It amuses me when people comment about my relative youth. My best response is, "Disease knows no boundaries. I have a friend who was diagnosed with breast cancer at 33." What I wish others knew: Routine tasks are anything but. They require more effort than they could imagine, but they won't hear me complain because I don't want pity. Everybody has problems. Mine aren't necessarily worse than someone else's, just less common & less understood.
  18. 3 likes
    Thanks Manolo ... I owe it all to Mr. Roger's neighborhood ....haha...he was a wise man! It's the 50th anniversary!
  19. 3 likes
    Update, fainting😊👍
  20. 3 likes
    Shakes, That must be so difficult to have those cognitive issues at your age. I'm not much older than you, so I can imagine how frustrating it is for you. I only have mild brain fog, so although I can't understand or give you advice, I do empathize with you. While I have no dx, except that my issues are in my head, I understand what it's like to have your body feel like it's betraying you and getting annoyed, frustrated or sad because of the changes. I am sorry you came here to vent, and you were told you're a fool, moron and that you need to be nicer to your wife all because of a joke. Yet I can see how the first two may not have known it was a joke, and Dave could have posted his reply as you did. Plus, I know sometimes context can be misconstrued online. But I have read your post a few times and see NO reason to assume you don't appreciate your wife or don't already treat her nice. I don't normally respond to posts because I am in limbo, and I'm probably not wanted here. Yet I hope you realize this is a wonderful forum with lots of helpful people.
  21. 3 likes
    Hello Miss Marcia, Quiet day here today eh? I think your new green face icon is pretty cool. But I wonder... Can you hear me inside that bottle of green dishwashing soap?. Who shrunk you down and put you in there anyways? At least they gave you a peep hole to look out. Oh., I may be wrong about that. Maybe you are on a cruise ship, the waves are high, the ship is pitching and rolling about and you are sick sick sick to your stomach and totally green from nausea and you are looking out the port hole window wondering if it would be better to open it up, wiggle through, drop to the ocean below your window and swim to shore. I think that you better hang on there Marcia, try some gravol or at least Pepto Dismal. I'm sure the weather will change. Your shade of green does remind me of Hulk. But you are totally different than that guy. I don't think you ever fly into a rage with fury enough to turn green. And if you did have a rage attack, you would soon tear your way out of that cotainer with a peep hole that you are trapped within. While you are in there, do you have any idea where the simple story that I started can go and retain any sort of , well, "story line". It takes so long to type. If I could tell you what the story is and you typed it with your condensed and wise short phrases, it would save a lot of typing for me with all the run on sentences I write and can't seem to stop writing them and they go on so long and repeating themselves over and over and I should have a key on my keyboard that says "and" instead of hitting the three keys a n and d everytime. We could do a chapter about the Cook, if that would help entice you. You did say that you like Cooks in stories. We could title the chapter "The Cook and the Door to Door Vegetable Salesman With a Horse and Cart And He maybe Has Parkinsons". You maybe could shorten the chapter heading a bit. Perhaps it should start out with an explanation that He, the vegetable salesman has parkinsons, not that horse named Jake. And the Cook is preparing a hugenourmous banquet that night because the Banker who owns the big Manor House, surrounding Farms and hires all those people, has returned from a big holiday in Europe with his wife after touring Ireland, Great Britian, Isle of Wight, and Spain on the French Riviera. No, he wasn't to France Marcia, "French Riviera" ,is the name of the steamship he sailed home on. Yes, that is confusing. Okay then, Lets call the ship Lollipop then, The Good Ship Lollipop. And as the banquet is wrapping up, The Cook announces that she has been saving her wages, and has purchased the property by paying the unpaid taxes and the near penniless previous owner has returned home to nothing. Well, he can sleep in the goat shed tonite, And the workers are going to reopen the Manor as a Micro Brewery and Dance club with a Boxing gym at the back. Or do you have any other plot line we could use. Have a good day Marcia..
  22. 3 likes
    Linda, I'm really sorry to see that your thread has been shut down. Truth be known, I have not been one to post my beliefs on the thread nor have I really took time to read it. I find such injustice that because a couple of haters or do we call them "trolls" who can't tolerate difference they attack to the point of meltdown. I have written the Administration asking them to reconsider and unlock the topic. After reading a couple of pages I can see that many members find comfort in the thread and in each other. Let Linda love Christ. What harm does it do to anyone? If it offends you then don't read it.....quit easy! PWP find comfort wherever they find it....who are we to judge, therefore it belongs on the forum. Seriously, doesn't Parkinson's give us bigger issues to put our energy into other then picking on a woman who only offers comfort? D
  23. 3 likes
  24. 3 likes
    Happy Mother's Day to my "good morning" moms.... These are the reasons I won't stop fighting.... LAD
  25. 3 likes
    Here is a good article about Lyme Disease: In many cases, including mine, I did not have a rash or even know when I had been bitten by the tick that caused my Lyme Disease. Therefore, I was not treated for Lyme Disease while in an early stage. I did have bouts of flu-like symptoms, stiff neck, joint pain and swelling, tendon pain, numbness and tingling in my hands and legs, and a significant cardiac dysrhythmia. Unlike typical PD, the onset of Lyme Disease symptoms in late stage Lyme Disease is very fast. I would feel relatively normal one day and wake up the next day feeling like I had a serious injury to my knee or elbow. After MANY months of symptoms; MANY visits to various neurologists with conflicting opinions; various tests (mostly abnormal); and a lot of frustration; my family doctor finally decided that intervention was needed and put me on the Burrascano Protocol for Lyme DIsease. I had a PIC line inserted and then six weeks of IV antibiotics, followed by months of oral antibiotics. My symptoms finally began to improve. Over the next ten years, my symptoms would occasionally come and go, but weren't as bad as they initially were. Around the year 2000, my symptoms returned with a vengeance. I walked with a limp; had numbness and tingling in my extremities; a significant cardiac dysrhythmia; swollen joints; and a large lump on my left Achilles Tendon. By this time, Al Gore had invented the internet. I did some research and discovered that there was a Lyme Disease Specialist only 100 miles from where I live. I went to see her and she did a bunch of blood tests. I had more than 50 (fifty) tubes of blood drawn on my first visit, including the blood sample she sent to Igenex (the reference lab for Lyme Disease). It was positive for Lyme Disease and the other blood tests showed a few other co-infections. My Lyme Disease doctor was both a MD and a ND (naturopathic doctor). She offered more oral antibiotics or an herbal treatment. She said that she had excellent results with the herbal treatment and I decided to give it a try. The herbal treatment is called the Cowden Protocol and I followed it to the letter. She said that the treatment would improve my symptoms and I have to admit that I was skeptical. My symptoms gradually improved and I have basically been in remission for the past few years (although I'm currently having neck pain and stiffness which I can't decide is the result of PD or Lyme Disease). Late stage Lyme Disease is bad, but in my opinion it's better than PD. With late stage Lyme Disease, at least there is the possibility of effective treatment of the disease, not just the symptoms. With late stage Lyme Disease, a cure is even possible, albeit not that likely. Many of these neurological diseases have similar symptoms. I'm absolutely sure that many people are misdiagnosed. For many months, the neurologists suspected that I had MS, when in fact I had Lyme Disease. Please feel free to ask if you have any questions. I'll be happy to help as much as I can.
  26. 3 likes
    Good evening everyone, or the ones that read this thread. Nice to see you Marcia and I am not buying into that don't know anything stuff. You know how to shrink yourself and live in a green bottle of dish washing soap and peek out an air hole. How do you do that? And you know all about movies cause you explained K-Pax to me one day. And I thought I lost this post and then I remembered that red button up higher that you told us about. AND don't forget that you just explained job lists to us and how if you don't write it on the list , it doesn't have to be done. Hmmm! Don't tell me you know nuthin. Hi Linda. Hope you and everyone have a good weekend. Well. I am tired out. I may go to Echo Beach and sleep on the sand tonite. I think they don't allow the stage coach and horses onto the beach area. Be strong everybody. jb
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    The following is probably just an echo of opinion voiced many times by many people but I’ve resisted adding my two cents for long enough. Why can’t healthcare insurance be just like car insurance? Sure, I have a preexisting condition but my premium and deductible should be based on the likelihood of me making a claim, the size of that claim, and the frequency of claims. I am not the same risk as someone who say has Parkinson’s and does not take care of themselves or runs to the Doctors office for every little problem. Why am I being forced to resolve my personal problem (Parkinson’s) with such a cookie cutter, one solution fits all answer? I think it’s because we allow politicians, and drug companies and, hospitals, and our neighbors to manipulate us into believing that what is good for them is also good for us; we’ve allowed them to make us believe that making everyone have “Insurance” will somehow solve all our problems. Does anyone honestly believe that adding even more money to the “healthcare system” will actually solve any problem? Or is the more likely outcome of such a solution that the system will simply find a way to absorb the money and then propose that it needs more. We need to ignore all the self-serving background noise and accept any change that moves the needle toward Freedom of choice and self-determination as progress in the right direction. This convoluted “system” we find ourselves in today didn’t happen overnight and to think there is some magic bullet that will fix it overnight is simply delusional. Attitudes and expectations are slow to change but if we abandon even the attempt to change them, all is lost and it’s only a matter of time before our Republic will be overcome by mob rule. I see this whole healthcare “Debate” as little more than emotional extortion, exacerbated by the intentional complication and fear mongering of something that should be very simple: let me find the solution to my own problems, let the market work.
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    The purpose of insurance is to protect the purchaser of the insurance from risks. If a prior sexual assault raises the risk, then the premiums must be higher. This is no different than a person that was hit by a drunk driver and has a pre-existing injury. Or, a person that was shot in a home invasion and has a pre-existing injury. Or, a person that has developed Parkinson's Disease. In all these cases, the person was not at fault for their injury or illness, yet they still have a pre-existing condition that would necessitate higher premiums to cover the increased risk. Like many others on this forum, I do not support the bill the Republicans just passed. I don't support it because the government is still involved in insurance and healthcare. I think the Republicans should have kept their word and simply repealed Obamacare, followed by passing legislation to get the government completely out of the insurance industry and the healthcare industry.
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    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.
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    No I don't have the button but I loved what it said ! Have a good weekend everyone!
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    Well nearly a year later (well..not quite) I have a update. I have spent a lot of time with him over the months and things are going much better for us. He is happy to have me in his life again and I am glad to be there for him (as cheesy as that sounds). Being uncomfortable over symptoms of a disease was a child-like behavior I am glad to have left behind, I am learning to grow up a bit more emotionally and so on. I will continue to support him and try to learn more to help in regards to his health.
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    The biggest project I accomplished is remodeling our bathroom. It took a while, but it is done! The includes new flooring, wall tile, new counter, some plumbing, etc..
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    I started to get some dandruff flakes so I started using a dandruff shampoo. The flaking actually got worse and the shampoo darkened the hair around my scalp and made it feel coated and look bad. So, I put a couple drops of tea tree oil in my regular shampoo, put it on the crown of my head and left it there for about 10-15 minutes then washed my hair. The dandruff is gone (it's been a month and still no flakes) and it also completely took off the build up on my hair from the dandruff shampoo.
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    I am so sorry that Linda's thread has been shut down. Her thread was informative and encouraging to me. The fact that it had to be shut down is an example of intolerance toward different beliefs or the inability to be civil in expressing beliefs that are non-Christian. I believe Linda is as open as anyone could be to listening to others, including those who are vehemently opposed to her. She has been firm in her beliefs, but always fair in her response to those that are against Christianity. With Linda at the helm of the thread, anyone who opposes is not discouraged from posting unless they are purposely trying to insult or hurt those of us who are Christ followers. The thread was started for those who are interested in topics about Christianity. It was not intended to have the tone that it has had where attacks are the norm. Disagreement would be allowed, if expressed in a genuine way, with the intent of greater understanding. With good reason, she defended her beliefs, but I never saw her be rude or inappropriate in her responses. If there was ever a hint of rudeness it was only because she was unwilling to be trampled upon by opposition. There are certain threads that I choose not to read because I am not interested. I don't understand why all readers do not just stay away from a thread that they do not agree with or in which they have no interest. Linda, I join you in prayer for those who oppose you and I also pray for you, that God would restore you after being hurt and insulted by some forum members. Carry each other’s burdens, and in this way you will fulfill the law of Christ. Galatians 6:2 But I say to you, love your enemies, bless those who curse you, do good to those who hate you, and pray for those who spitefully use you and persecute you, Matthew 5:44.
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    Genden, I hope you are able to take a nap. Next time you contact a hospice nurse, ask for advice. Ask for help with this temperature, or an explanation of its possible origin. It may not be the catheter. Sometimes, if someone is very ill and weak, their temperature control can go off. Was he in pain at that time? Or just fidgety? His comfort (and your ability to rest!) is paramount. A respectful hospice nurse should be able to help with those questions if you ask them. Don't feel pushy if you ask for one nurse over another if you are more comfortable. Also don't feel embarrassed about talking to them that you felt left alone and let down by their lack of response. Ask them what is a reasonable call back time when you need help. Keep on keeping on, and deep breaths. We are holding you in our thoughts.
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    welcome , I was DX at 50 but had symptoms well before . Telling people of your DX is a personal choice , I generally don't talk about it unless someone asks why my hand is shaking or why do you run off to the bathroom so much etc . I guess it is because I don't want people to look at me and say things like poor guy he has parkinson's or for people to treat me any different than they had before . That being said ,for work purposes it depends on what line of work you do and is it affecting your ability to perform your tasks ? I was a union Steamfitter (pipefitter ) and was having issues with balance and had a couple falls at work . Using my left hand for delicate tasks was becoming increasingly more difficult . The balance issue was a huge concern as most of our work is off of ladders or in some type of man lift . These are some of the same reasons I went to have my symptoms checked by my Doctor and eventually the neurologist . When I was 100 % sure what I had and how much it was affecting my abilty to perform I told my boss . In my case I was rather lucky as my boss was also a good friend that I had gone through the apprenticeship program with 24 years earlier so he was very concerned and supportive . I guess it comes down to Do they need to know now and if they will be supportive of you and do you feel they have a need to know . Dan
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    Hi jb and everyone.. First of all i have to say thanks jb as often i have up and down days as i'm sure some of you may know what i'm talking about... However on my down days there's times i could be browsing through the forum and i come across a post from jb and all of a sudden i feel bit better yes jb you lift my spirits so a huge thank you and take care. em
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    Be afraid, very afraid . . . la-fi-hiltzik-trump-disabled-20170522-story.html Hope NPF and others come out with strong positions on this one. SS Disability is a benefit we pay for through our payroll taxes and a lifesaver for many with Parkinson's disease and other debilitating conditions. "Disability insurance is an inextricable part of Social Security. It’s a core part of the program, just like retirement benefits. It was created as an add-on to Social Security in 1956, under President Eisenhower. It’s financed by the payroll tax, and the reserve funds that cover both aspects of the program are more entwined than ever, thanks to a reform measure passed by Congress in 2015."
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    Ah... Thanks D. You get me!
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    I read thru the posts, evaluating different approaches to PD. Most of the time, I seriously read the posts, and sometimes I read with elevated concern. It is such a joy to stumble on a post that makes me smile and elevates my mood. LAD's posts have made me smile more than once. Thanks LAD..
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    Boy, talk about missing the point of the post. Thanks for bringing sunshine to everyone's lives! Telling us we are at a disadvantage and keeping our fingers crossed that our loved ones stick by us?? I have two "care-givers" in my immediate family, and two others in my extended family. I know the drill, but thanks for sharing your opinion. Thank goodness you will never be in my future! I will appreciate my wife, and as such, she should appreciate me for who I have become. We are a team, and hopefully we will stay that way; without having to rely on narcissistic care-givers like yourself. And when you quote my post, please use it in its entirety, so you don't "frame" your opinion. Move along please.... P.S. My apologies to the OP. IM me if you wanna talk further about this topic, as we are in the same boat. Another good subject matter polluted, unfortunately, that needs to be moved offline.
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    This past weekend the weather was perfect on Sunday (Mother's Day). My wife went to visit her Mom while I stayed at home to do some chores. First, I had to mow the lawn because that stuff that falls from the sky, rain, makes it grow. It also doesn't help that I put fertilizer down this spring. next up was to continue my task of painting the foundation. My wife's rules of engagement on projects is no ladders without a spotter. Being the typical guy, that surely does not count a step stool (ladder). I managed to do really well on the stool on the uneven grass as I slowly worked on my project. I finally decided to pack up shop for the day. I placed the stool on the patio (flat surface), stood on the top step so I could remove the tape around the gutter that I did not want to paint. I have no idea what happened next as my 198lb body fell to the ground, recording my first Parkinson's fall, as my back rammed into the 8x8 support post for my screened in porch which preceded the rasbury on my left leg and skinned knuckles on my right hand. I laid there on the ground trying to catch my breath which was unexplicably taken away for some reason, thankful that no one witnessed my Humpty Dumpty impersonation. The moral of the story is if your wife says no ladders unless you have help, you should listen. Of course I'm a guy and am invincible. For some reason I think I'm much younger than I actually am. Ahhh, to be twenty one again........ Cheers everyone. Dave
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    I have noticed my right hand shaking a lot after some exertion. I am mainly left side affected. I usually eat or rest and it can go away after a break. I think it is good for the body on general to keep moving, but I have to take breaks for a while before I go do something else. I think, if you don't move much, the body will stiffen up worse and your stamina begins to go down. However, I thin we need to pace ourselves and not overdo it. I have found when I am really tired, I do need to rest. If it is just apathy, I can feel better after forcing myself to do some light activity. However, if I push myself, I can ruin the next day because I will have a bad one. For me, I have to balance and listen to my body carefully.
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    The rocket thundered on takeoff from ``other places``, or was it Outer Spaces, picked up shuttles that clicked onto our Rocket from other galaxies, skimmed through Milky Ways, Black Holes and Time Warps. The online show was a new sitcom produced by a Miss Feisty Folder and proved very interesting. The flight was ``Out of this`World``. Pun intended. Very modern it was, But with very little ceremony they prepared me for exit and my return Home and I was ejected out of the Air Canada Rocket by an older than me gentleman, a former WW 2 Air Force Crewman, a bomb aimer I believe he may of been, who calculated wind drift, our Mach 7 ground speed my weight and the heftiness of my carry on luggage that I clutched,(hoping he wouldn`t discover my Trail Mix raisins and peanuts from some other stratosphere), and pushed me out the Arriving Somewhere Rocket Exit Tube as we passed over Kilkenny on the next orbit of the earth. I fell, the chutes opened, I drifted, I saw land, I saw ocean, flooded rivers and cars and cows and people and landed in my backyard. The horse knickered for a bale of hay and the dog needed out to pee. It was nice to get home. Oh gosh Linda, nobody is more ParkyBrained than I am. I'm sorry if that posting above caused any confusion. There is really nothing there to understand. The truth is that last week I did go on a short trip to Minneapolis, ( a beautiful city that is by the way. Lots of good food, lots of nice people) and I returned on Sunday. What I did post on Wednesday was just a flight of fantasy, a science fiction breakaway, a Tom Swift moment of imagination. I don't know where Marcia is. Usually she points out to me that I am having a Walter Mitty Moment. So Linda, if it made no sense to you, that is probably a good thing.
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    Pathfinder, (and genden) Lots of warm thoughts going to you both. No suggestions, as I have nothing new to add other than my thoughts and support.
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    Welcome Back Jb, we tried, but the forum just wasn't the same without you! I thought you came over to the States, possibly Canalside, our new area down near the Buffalo Marina, figured you would be driving your pancake food truck, serving nice warm pancakes and waffles with homemade syrup! Food trucks are the hip new thing going on over here. I kept driving around looking for you, even called out your name a few times......people looked at me a little strange, but I was determined to find you!
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    I definitely notice the twitchiness in your hand....
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    Good Morning everyone! I hope you all have (or are having) a great day....I haven't been on here in a little while, just trying to keep myself busy (I don't really need to try) between work, coaching little league, working on my "honey do" list it keeps me going....The hardest part of everything is not "crashing" when I get too tired and if I stop and rest I don't want to get back up, lol. Well Happy Moanday....I mean Monday
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    The point of the exercise isn't to address the current symptoms (and in fact for most of us the exercise is be difficult and can exacerbate current symptoms). The stiffness I felt after a work 3 years ago is no where near how stiff and achy hurt I feel after I work out today. My tremor goes crazy while I work out, and the fatigue hits like a brick shortly after too. BUT, the physical act of exercising actually has the therapeutic benefit of resisting neurodegenerative diseases. When you work out hard, to the point of actually tiring yourself out, there can actually be measurable increases in dopamine in the stiatum. Regularly working out, even moderately, has been prove as one of the more effective ways to enhance the plasticity of the central nervous system. That means it it makes your brain better able to adapt and resist the effects of PD. This isn't sales pitch type stuff from an infomercial on late night TV, its scientifically documented fact. So, yes it sucks. It can hurt, and I'd agree that it can even cause symptoms to flare up. But, if that means my current symptoms flare and I slow down the progression of new ones, I'm all for it.