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  1. 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! ,
  2. 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.
  3. 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!
  4. 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.
  5. 3 likes
    Thanks Manolo ... I owe it all to Mr. Roger's neighborhood ....haha...he was a wise man! It's the 50th anniversary!
  6. 3 likes
    Update,...no fainting😊👍
  7. 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.
  8. 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..
  9. 3 likes
    Here is a good article about Lyme Disease: https://medlineplus.gov/ency/article/001319.htm 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.
  10. 3 likes
    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..
  11. 3 likes
    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.
  12. 2 likes
    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
  13. 2 likes
    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."
  14. 2 likes
    Of course we get you!! I admire you for the care you give your Mother. Fighting her battles with medications and making her as safe and comfortable as you can. You rock!🤗
  15. 2 likes
    My husband has vascular dementia and Parkinsonism. We are fourteen months from diagnosis, our lives have been affected in so many ways. I am his full time caregiver and happy to do anything for him. I am a very social person who has a lot of friends and activities. Hubby can still be alone so l can do some socializing, but we had to adapt quickly when dealing with this new challenge to our lives. I adjust how often l socialize , my friends also know if l cancel at the last moment l am needed at home. I don't resent that l am not as social because he has cared for me with such devotion and would do it for me in a heartbeat if the roles were reversed. Have you tried socializing at home, or one of your favorite places to go? I know hubby has anxiety sometimes, here at home when people drop in he is more comfortable. Maybe talking with your wife and meeting in the middle can give you both a workable solution. l wish you well, this PD is an awful lot to deal with!
  16. 2 likes
    Ah... Thanks D. You get me!
  17. 2 likes
    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..
  18. 2 likes
    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.
  19. 2 likes
    I get that you intended humor, but I would caution against that specific kind of humor. It can turn serious if you aren't really careful. That said, I recently had a neuropsychological exam. It revealed some memory issues and fluency issues that were unexpected, at least for the doc doing the exam. My executive function, for the most part, was "Superior" for my education adjusted age group. A bit different from what was expected for someone with a PD diagnosis as executive function is typically where the deficits are found. The memory issues put me in the "low normal" category and verbal fluency was "mildly impaired" according to the report I got. I think that's because when asked to list every word beginning with a certain letter I stumbled pretty badly. In conversation, other than occasionally needing a little more time than normal for word finding I'm fine. And outside of the test I could think of way more words. Anyway, while I may have sounded a bit harsh in my first reply, please do stick around and contribute and learn from this group. I wish this group wasn't necessary, but am glad for it at the same time since it is necessary.
  20. 2 likes
    If your wife is "very understanding, patient, and always there to help with with anything I need" then you're a damn fool if you do anything but hold on to her. Rest of it might be worth responding too when I'm not so tired, but seriously, just because your wife wants to be more social than you are presently comfortable with is no reason to contemplate divorce. You might need some help with adjusting to your new limitations, but your wife is a willing partner in all of your struggles. Honor that.
  21. 2 likes
    Elphaba is awesome and has some of the best quotes!! I felt the need to post one😀
  22. 2 likes
    Dianne- I will keep you in my prayers. I hope you feel better soon. LAD
  23. 2 likes
    Get a third opinion. And if your meds are working for you and causing no side effects I can't imagine why you'd want to mess with that. You can correct me if I'm wrong, but it sounds like a doctor whose worked with you for less than an hour is suggesting messing with the work of YEARS to get your Medications right, out of curiosity. Some people become drs because they are curious, others because they care. Find one that cares.
  24. 2 likes
    I have to say that my symptoms are very reduced. I started doing interval running/walking and eating bananas and taking turmeric (sp?) My pain in my leg is almost none existent and my tremor is about 50% of what it was - All thanks to this forum! I meet the specialist next week but my plan is to keep going the way I am. I ordered a new bike seat too!
  25. 2 likes
    Good Morning everyone, It is a new day, grab onto it and squeeze as much good out of it as you can. Peace, that could be a start to a story. It also could be a jumble of ideas that end up going nowheres. I encourage posters to keep the Hellos and How are you and Whattzzupps coming on the Good Morning Thread. Ella, Me rite book? Ha. not me. I like to project out ideas but that is usually as far as they go. But thank you for the encouragement, That is nice. LAD, if there was anymore cheesecake in the fridge, I would carp diem it again. But it looks like Shreddies today. Oh well. ( sigh) Nashville Predators are doing pretty good against the Ducks of Anaheim. Music City is being renamed by some as Smashville. Ottawa and the Pittsburgh Penguins are having an excellent series as well. You Americans must be very happy to have had Wayne Gretzky and the NHL introduce the worlds best sport, our game of Hockey, to you many years ago now. I better get going, good days to everyone. jb
  26. 2 likes
    He knew better than to look backwards and walk, especially of late and he stumbled over his own two feet that he had always walked upon. If not for a tight grip on the horse's reins and its steadiness, he would have fallen, yet again. Thank you Jake he said and gave him an unsold carrot from his pocket and a pat on his neck. Its my old boots, they are worn out he said to the horse. He stroked the neck of the draft horse, smelt its sweat, or was that his? But who cares he thought. Do you care Jake? The sun was warm and he felt a weariness that he couldn't shake. He lead Jake off of the laneway and into some shade. With the wheels quiet now, standing still, he listened to the world and the buzz of flies. Tired out, he closed his eyes and leaned against the horse. Moments later, distant noises brought him out of his horselike standing nap and his eyes lifted back the few hundred yards to the rear side of the Manor and its servant doors and sheds. Maybe he was imagining it but that sounded like a door swinging shut. And there was the sleeping cat very much awake now and strutting like the Owner himself; out past the chicken coop and to the goat pens.. "Quite a cat there Jake old boy that can swing a door shut after itself" he told the horse and himself. When fresh smoke rising from the Cook's chimney met the gaze of his squinted eyes he knew there were people back there. Was that a face looking out from behind the heavy curtains of the library windows? Had he returned to the yard right away he would of seen the Cook scraping the porridge from the pot into the dogs dish. She announced to the milk maid who was wrestling a goat out of the henhouse, that there was enough cake and cheese left over from last night for the breakfast. Efficiently, not one to waste trips outside her kitchen and thinking of suppertime, the Cook seized a chicken that ventured too close to the dog's porridge for the last time.
  27. 2 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. 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.
  28. 2 likes
    Tough day today. My father lost his 3rd friend over the course of 6 weeks. Today's funeral was particularly hard since his friend had PD and his granddaughter read a poem she wrote about it. It's been a long time since I had a complete meltdown. I had to leave. Thank goodness for my trainer and friend who put me back together. My dad's friend didn't have the ability to fight but as young onset...we do. Thank God! keep fighting my friends! LAD
  29. 2 likes
    sorry-had to do it! Made me laugh out loud!
  30. 1 like
    Cyber hug coming at ya!!! Thanks P. We should move along though... CG's do not have PD so our opinions do not matter. shhhh... let's go.
  31. 1 like
    Miracle you are a huge contributor on this forum both as caregiver and as a friend to many of us with PD. Do exactly that...move along from this thread and stay positive! There's always going to be personality upsets. Thank you for being you. D
  32. 1 like
    First off, the bias in that article dripped off my screen and onto my keyboard. But, that aside, while the enrollment in SSD might be dropping slightly over the last couple years, bear in mind that SSD is probably the single most abused "entitlement" program right now. Vast numbers of people got moved, that really shouldn't have been, from unemployment programs to SSD because that was easier than actually dealing the problems related to long term unemployment of large numbers of people. It is far too easy to get SSDI. See https://www.forbes.com/sites/richardfinger/2013/01/14/fraud-and-disability-equal-a-multibillion-dollar-balck-hole-for-taxpayers/#5fde4db83369 There are massive cuts that can, and should be made to all federal spending categories, SSD included. If the cuts are done intelligently (and, of course, they won't be, and probably deliberately so) those cuts shouldn't impact those that have actual disabilities.
  33. 1 like
  34. 1 like
    Dave always treats his wife with a lot of respect and never takes her for granted. You are on the right page in my book.
  35. 1 like
    Yeah ok... everyone sticks around no matter what right? Good luck with that one Luke! The person with the disease is at a disadvantage as harsh as it may sound but it's reality. As you get worse over time you will need someone to take care of you. I'm a caregiver so I'm your future unless of course you can do it all and a cure will be around the corner. Many times people react and lash out at their loved ones without even thinking. Appreciate the person that you cannot do without because that day will come before you know it.
  36. 1 like
    Every advice or comment is a wake up call. If you are misunderstood then let it be a warning to not go to the dark place even though it seems to be the most logical thing to happen at this time in your life. Share your feelings with those you love and talk it out. There are no mind readers so the more you can express yourself the more comforting it will be for you. Only the admin police can decide if anyone is wanted here or not. Post often and people will respond. You need an outlet and this can be the place for you!
  37. 1 like
    Wow. What a trip. I am so glad it worked out; the angels were working over time! Boy, the other big lesson is take care of yourself better. I know, I know, I'm preaching to the choir, we get told that all the time. We know it, we live it, and it becomes another weight on our shoulders when people tell us that, yet life doesn't always give us the time to do so. I am guilty of that myself, I found myself in the ER last year, and they wanted to admit me, but I declined against med advice, because I had several things that had to get done that day. I got those emergency things done, and was back and admitted the next day for 24 hours. Wow, stress is a killer, and it never ends. Yet I know it's true. So no extra pressure, just thankfulness you are okay, your DH did well, and life goes on. No stress, right? I'm off to mop the flooding basement... every 2 hours... too much rain, the water is seeping up from the basement floor. Sigh. DH is stymied by it. No stress, right?
  38. 1 like
    Love it. And the beautiful picture, too.
  39. 1 like
    Found this online today (Parkinsonsdiva.org).... little past Mother's Day but...here's to the PD moms LAD Never have I met a more fearless group of women than those battling PD! They are mothers, sisters, wives, doctors, artists, leaders. They give without hesitation even when they can’t walk straight due to dyskenesias. They are role models for every girl who thought they could not make a difference in the world. They show us that a lot of heart and perseverance can turn a tough situation into a self enlightening path for others to follow.
  40. 1 like
    good morning everyone, I hope that everyone feels free to say good morning as you usually do. I started to write a little story to flesh out my thinking that sometimes I wonder where everyone is. My story such as it is can fill in around the daily stuff so keep it coming please, add your ideas to a chapter, do a chapter. I certainly wasn't trying to block anyone but rather trying to pull more people in. The nature of this thread is not much without all of you. Good morning Feisty Folder. Does that feel better. I must of gotten up in the night, thought I heard the teakettle starting to boil but it was you posting I think cause the steam was coming off of my computer. It sounds like a challenge you have with your Mom, (and Dad) but I can see your love and devotion for them shining through. I am glad that you took time to express yourself so well. I hope that today you have a good day. All the best to you FF, Good days to everyone.
  41. 1 like
    I sure agree with MJ Fox's quote. Acceptance is such an important trait that makes for a happier life both for ourselves and those with whom we interact.
  42. 1 like
    I have a low opinion of doctors in that area. I presented significant symptoms and nobody even mentioned parkinsons. I went around for 3 years there. Two years later, I was in Texas, it got worse and a neurologist walked up to me and knew I had PD. DatScan confirmed it also. I think they are just believe they know better.
  43. 1 like
    Noah, The sleep issue your are battling is very common with PD patients. I have read many studies about Vitamins and herbs to help aid with sleep and the jury is still out as to their effectiveness. As far as the 2 you are currently taking, melatonin and valerian, The main issue has been if these products even cross the Blood Brain Barrier in order to work. The molecules seem to be too big to pass through this, which means that they have very little efficacy if any at all. The product Nocturest (as per their website) is a combination of passion flower, melatonin, valerian, lemon balm, hops, chamomile, theanine, and magnesium. On e again the issue is the same. Are these able to cross the Blood Brain Barrier and, if so, will that concentration be enough to work. Most of the studies say, "No." I understand your reluctancy to take hypnotics (ie, Ambien, Lunesta, etc...) due to the side effects of theses medications. Have you tried Benadryl (Diphenydramine)? This product is primarily used for allergies, but the side effect of drowsiness makes it effective for sleep also. It has also been used, way back in the day, to treat PD symptoms. Maybe a 25mg tablet to start may help. It is effective in some people and does not usually cause the "drug hangover" feeling the next day. I would also recommend that you do not take this in combination with any other natural products. If this does not seem to work you may want to speak to your Dr. about possibly trying a prescription medication called Desyrel (Trazadone). It is indicated for treatment of depression, but as with many of these medications it is the side effect of drowsiness that can be effective. I know several people who have had great success with it to help with sleep. It comes in strengths of 50mg, 100mg, and 150mg. I have seen starting doses at 1/2 of a 50mg tablet (25mg) at bedtime for sleep. It can be titrated up to a dose that may work for you. I have also seen that it does not seem to cause the "foggy" feeling the next day. There are a few opinions and options for you. Please keep me posted and remember with any of these medications it is best to "start low and go slow" with the dosage of any of these medications. I hope this helps.
  44. 1 like
    Hunter Dan, I was a union Steamfitter too, If I had developed PD while I was active my co-workers would have smelt blood and nicknamed me "shakes" or something. Pipefitters would have made great pirates.
  45. 1 like
    This is exactly what happens to me, I was dx with neuropathy about 8 months before my PD dx and when I asked if they were related I was told "maybe". I have been on gabapentin for quite a while (1200 mg at bedtime) however all I feel it does is "slightly" take the edge off. When I am up and moving/exercising the pain lessens however just like you when I sit down to relax the pain comes at me like wildfire.
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    I agree with Stump and here's my add. I was able to push through my symptoms for the first 6 years no drugs. There came a time when i could not safely drive any more and I started mirapex. Over the last 6 years my drug intake has progressed as my symptoms have progressed. I have always exercised from being a 6 sport athlete through junior high to a 3 sport athlete in high school. When I was diagnosed I was playing tennis 4 days a week, yoga 1 a week and an hour cross training class twice a week. I can assure you exercise may slow progresion of PD but it does not stop it. I have remained stable for the last 2 years on the same dose of rytary and mirapex . I take 9 48/195 rytary a day and still have 2-3 hours of off time. I infrequently get dyskenisiias but consider myself lucky to be able to take so much rytary without too many problems. I tried 10 rytary a day for a 2 week period and had to quit because I became disoriented and kept passing out due to low blood pressure. so yes exercise all you can. I still go to Rock Steady boxing 3 days a. Week, play tennis once a week and ride my bike 6-8 miles 4 times a week. But as time goes by, you will probably have to take some medication. Don't fear it, but do prepare yourself for it. Medication is not any sort of failure on your part. It is simpler addressing your disease and improving your quality of life. Delta
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    Tamara, I try and keep a low processed foods diet. In the states we have an over abundant amount of highly processed foods. This often leaves the item with little to no nutrition. I have lots of salad, and chicken low meat fats, try to keep semi paleo in nature. I try to avoid wheat gluten as much as possible. I have found this helps with my energy and my joints hurt less. There have been studies that suggest a mediterranean diet is helpful for those with PD. Good luck
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    I've had the Duopa pump for 11 months. It gives me a steady dose of carb/levo for up to 16 hours/day. That means no on/off fluctuations. It totally eliminates the issue of having to schedule my medication around mealtimes. It gives me the freedom to schedule things and expect that I won't have a sudden off period and have to cancel at the last minute. I can take a nap without worrying about the alarm on my phone waking me up. I never miss a dose or wonder if I took a pill. I still have PD. It didn't l make my balance any better or make my eyes less dry or fix my faulty thermostat. I still have bladder and bowel issues. It didn't cure my slowed thought processes or restore any lost functions. Unlike DBS, it did not worsen my cognition. The dose can be fine tuned by my MDS to give me maximum benefit with the least amount of dyskinesia. If I am stressed or tired, I can give myself a little extra at the push of a button up to five times a day. I love my Duopa. Dianne
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    A warm welcome from me too! Great posts by everyone! My own advice is to avoid -as much as you can- dark thoughts and stress which both fuel our symptoms and progression. Whenever you have a "poor-me" moment, try to remind yourself of all the things you have -and they are many!- instead of those you have lost -or think that you have lost... PD can't stop you from living your life exactly as you had planned. It just takes a little more determination and perseverance.
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    This is the cycle many of us go through. We take a med that works, then we get a side effect from it. So then we go to the Dr and they prescribe a different med to take care of the side effect. It gets very frustrating. To me it is a balance of which is less annoying, the side effect medication 1 gave you or, having to take another tablet or two a day to take care of the side effect from medication 1. It is all a balancing act or a "which is the feller of two evils." It is hard to have to live like that, but sometimes we just have to. Hope this helps and thank you for the input.