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  1. 10 likes
    I finally have some good news to share. I met the Interventional Radiologist today who will be inserting a G-j tube on Friday, April 21. I will begin using Duopa the next day. Today is World Parkinson's Day 2017. I wore my special t-shirt to raise awareness. Dianne
  2. 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.
  3. 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!
  4. 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.
  5. 6 likes
    I went shopping. In my mind I'm repeating eggs, whipping cream, baking powder. Just three things, I should have written them down, but just three things so I got it. Park the car at the far end of the parking lot, place was packed. Three things, that is all I have to remember. Truck backed out suddenly, startle reaction, fell over (remembered to tuck my head in). Got back into the store and came back with Ice Cream, coffee, and baking soda. My wife now writes out the shopping list.
  6. 6 likes
    Yesterday I got a chance to meet Beau's Mom. I was heading to my wife's aunt and uncle's to stay the night so I was closer to Evergreen for a neuropsychological exam this morning. Got to visit with Dianne for about an hour. It was certainly nice to meet someone in real life from here. Edit to add: I'm on my phone, so I'll write more when I have a real keyboard to type with.
  7. 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.")
  8. 6 likes
    Hi, everyone. Am back from my unplanned and long hiatus. There was no ban (neither on me nor the thread), FYI. Just a series of mainly health issues I was dealing with, like life sometimes sends us all. I was without a laptop for most of that time, and it's good to now have a new one up and running.
  9. 5 likes
  10. 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! ,
  11. 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
  12. 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.
  13. 5 likes
    Had a PD -0 ...ME - 1 moment today hiked a trail to incredible lookout today!
  14. 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
  15. 5 likes
    Hope everyone had a good day...I follow another online PD site ... this is the pledge....works for me!
  16. 5 likes
    Thnking about our new member, The Count, I will change my format this morning. 1. Good morning to every one. 2. It takes two Levadopa to get me awake in the morning. One for each eye 3. A third hand may be helpful some days. Ah, who needs three shaky hands. 4. Four--ward I trudge, hauling myself along this mysterious trail called Life 5. favourite 5 sandwiches-BLT, roast beef, egg salad, ham and cheese and Peanut Butter with Honey 6. the big 6 -0 is Looming within a year and I plan to...... 7. I baked cookies yesterday and today I will eat seven of them. I did get a jump on this topic, only 3 more to go . 8. I went to the local Chinese buffet last nite with a buddy. I 8 a lot. 9. At age 9, I went to a one room country school, grades 1-3 with no running water. 10. Despite some challenges, maybe about 10 of them, and in my tenth year of Parkinsons, It is a good life I have even if I have to take 10 Levadopa pills a day.
  17. 5 likes
    Hi Gulfvet I agree that PD dx does not mean a drastic change in life. I have been dx'd for 4 years and DH (dear husband) has been dx'd one year. I recently drove our Harley trike with DH sitting behind for two hours. The next week, DH and I went kayaking ...in separate boats..for two hours We are now planning a 7,000 mile road trip with boats and trike in a trailer...AND fulfilling our bucket list. On our list is a hot air balloon ride, a wood carving seminar, a pontoon plane ride, deep sea fishing charter, 10 days on waterfront of Vancouver Island, BC, a kayak trip up Cowlitz river to dam...only a partial list. I will be 70 soon, DH will be 72. Of course, we are spending our children's inheritance...but intend to make memories for a lifetime. 😉 Each day we accept...adapt...and laugh..... try to serve others...and thank our creator for the many blessings we have. NN
  18. 5 likes
    Patients who eventually get diagnosed with MSA typically have abnormal Datscans early in the disease course. Similarly to PD. Datscans CANNOT differentiate between PD and MSA cause they are abnormal in both occasions. A normal Datscan -or, even more so, a series of normal Datscans within several years from diagnosis- strongly argue not only against PD but also against MSA. Thus, the diagnosis MSA is not typically considered for patients with parkinsonism and normal Datscan (s). The differential diagnosis of patients with parkinsonism and normal Datscan may include dystonia, essential tremor and several types of secondary parkinsonism: vascular parkinsonism, hydrocephalus, drug-induced parkinsonism (such as antipsychotics), or toxin-induced parkinsonism (such as manganese poisoning -may be observed during occupational exposure, as in welders, after chronic use of ephedrine-based psychostimulants or even after chronic use of bath salts made from ephedrine!!).
  19. 5 likes
    Glad you are doing better, Linda! Luke, I like your tone. When I first saw this thread on the forum, I had no idea it would turn into one of the most entertaining of all! In state-run organizations (such as the high schools in which I once taught) I was unyielding in observing a strict separation of religions and general education. But this forum is not state-run and its threads not mandatory reading for pwp. Although I do not label myself "Christian," those who find Christianity helpful in their self-treatment are welcome to their own thread as far as I am concerned. They are not proselytizing if I am not reading. Like Luke, I say . . . carry on!
  20. 5 likes
    Saw my MDS today. She said your mindset & attitude can have a huge ettect on your PD. I've been exercising, and building an excercise program in my area. I'm feeling good and helping others as best as I can. She looked at me and said "you're doing great - I can tell by your posture. Keep doing what you are doing". So stay positive and stay hopeful!
  21. 5 likes
    Check these exercises for hands
  22. 5 likes
    From my observations and experience with DH who is in end stage, there is a time when his brain is no longer capable of the focus to want to do the things you would like him to do or be. Make sure that the problem is not depression. Medication can help depression. If it is the progression of the disease and the brain function is impaired, what is is. Loving him, taking care of his needs and making him feel secure is about all you can do. We all want things to be better and feel guilty we can't make things better. If all the medical cause boxes have been checked--what is is. If his brain were not impaired by Parkinson's, he would be eager to be an interactive grandfather, resume his painting, listen to his music. We can accept that someone doesn't play the piano anymore when arthritis has gnarled the hands in dysfunction and pain. We wouldn't force it. We can't see the plaques and shrinkage in the brain that make function difficult or impossible, but it is real.
  23. 5 likes
    Hi folks. From motorcycles to kayaking! This thread is intended to be frank about evolving stages of PD...but not necessarily negative. So ....we are planning a road trip that contains our "bucket list"....in the past we've trailered our motorcycles and kayaks from our camper van. We've been uncertain if we were able to do that again. Well, i proved "doubting Thomas" wrong by driving Big Blue (our Harley trike that replaced our singles) for two hours last week. It was great and I had full capacity to ride with the wind in my hair, and my trusting DH sitting behind...with a few hugs during the long roadway stretches just making sure I was awake...(smile) Last week we went kayaking first time in years. We were VERY doubtful...so, we hired a retired nurse who also is a professional kayak guide...how great is that?! We not only did great....we did MORE than great!! Unbelievable 2 hours among wispy weeds, palm trees, and dozens of varieties of fowl. We intentionally loaded...unloaded all our gear and boats with no help...did just fine...we both have resting tremor...so lifting and carrying boats worked...wasn't easy, but it worked! We learned a new way to get in and out of the boats...which puts the frosting on the cake! Now, I KNOW this is in stark contrast with the many posts I've shared about symptoms...tests...etc. THAT's precisely why I want people to know it's important to stretch beyond status quo. I still hv symptoms...however, modifying ...adapting...and going a bit slower...we DID it! I really am still not sure just HOW we did it...but it has energized us and brought "hope"... for lack of a better word...back for us. I dont understand it ...I just lived it...when we got home...both of us were exhausted...stayed at home for a week. Soooo, DH ....who literally has been by my side resting nearly all day for weeks...is now drawing plans to modify our trailer to make easier mounting our boats... we have done NOTHING for mos....now.....we are planning....planning for fun....! Take away? Try. Keep trying. With hopes and prayers for all impacted with PD... NN
  24. 5 likes
    I find the new forum quite confusing too! It's much more difficult to find new content/follow topics now. Not parkie-friendly...and, for some reason, I also find it kind of "uninviting", especially for new members. could be just me of course. Stephen is a very dear friend of mine, a sensitive, intelligent, amazing man, an excellent diagnostician/pathologist and a very talented artist (painter and writer). It would be a real gift to patients if he started practicing medicine again.
  25. 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!
  26. 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
  27. 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.
  28. 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?
  29. 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.
  30. 4 likes
  31. 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.
  32. 4 likes
    Linda, I'm glad to have you as a friend. As to a few others, well Mom said it best "If you don't have anything polite to say, don't say anything at all". I miss Mom, very wise women. I finally rearranged my home office. Still working, grateful for the gifts I have, but at times realize there is a whole world out there and I need to step away from my computer. Oh, today is the anniversary of my parents 70th wedding. I still count my lucky stars to have had such wonder parents. Of the six of us kids, five are doing well. One is bitter about life in general and feels he had the worst childhood ever. My only thought is what we focus on brings out the best, or the worst, in all of us. Always amazed that some people can be in a lush garden, and yet just focus on the weeds. Meanwhile I'm up early, all three dogs camped out in the office with me. I've had my morning espresso and looking forward to a nice sunrise. Life is good.
  33. 4 likes
    Yeah!!! This is who we need on our side, fighting for a solution. https://www.ibm.com/news/ca/en/2016/10/12/w711820i37027w27.html
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    That statement would only make sense if someone asked for your opinion right? Looks like BIg Brother is watching very closely now.
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    Good Morning Everyone, I hope that everyone had a good weekend. I am happy to say that I finished with the maple syrup boiling on Saturday. Now the cleanup!!! So Ella, I have become the MC, you made me chuckle. I just write stuff and try to engage people to come forward and say hi. A long time ago, I realised that a lot of the topics on the forum were complex and I felt that I never had enough knowledge to offer a comment on it. But me being me, I couldn`t just read and not say anything. That is how Good Morning`` got started. No topic really. Just a place to say hi! Or whatever you want. Like a never closed coffee shop where we can all sit down and chat and come and go. Make a comment, or just a nod, I know some of you just walk up and peek in the window, perhaps you are shy to come in and pull up a chair and that is fine too. Just know that everyone is welcome to join in with a comment if you wish. There is lots of room for everyone to join in. And Ella, If I get to be the MC, and a strand of this thread, and I can be so bold to say; it is only through the dedicated postings and readings of all of you that have taken all of these strands and created a good and strong strong thread that with passing time has become a strong rope. With a strength of history, a purpose of the present, and hopes of the future the rope grows stronger. Well, I didn`t sit down intending to spout off about all this. Maybe LAD it was triggered by your comment a couple days back when you said we all ``seem to know each other so well``. Good days to all, jb
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    Tom, Glad you posted.. I relate so much. Results of diminishing cognitive/psych exams tell the story. However, it doesn't reflect the impact I'm experiencing. Yeah, I dont match colored cards...ok...that does not equate to the slaps I feel ...not just the embarrassment...but losing confidence. Lately, when asked a question, my response is followed with, "Are you sure?" Beau's Mom, Diane, often speaks of the "grief process" with each change in symptoms...denial, anger, acceptance. She is correct. I posted before that cognitive skills are the hardest...cuz one feels alone...hiding deficits...while disappearing....no one hands you a crutch when ya fall. Tom, I think I'm in acceptance phase now. I no longer help DH in finding locations in the car..(smile)...not only do I dont know where I am .....DH doesn't listen to me...lol... I worked for a lot of letters after my name...and now it means nothing.....can't do simple math, can't follow directions from automated phone "people".... the list is long. I'm ok with it. I've posted before, but bares repeating: I'm no longer a professional, no longer a mom, I seldom leave the house...I am a shadow of myself....I've pondered...why am I here....knowing I face a long good bye.... I prayed...prayed for weeks... to know my purpose. Finally, I received an answer.....just to me...I am to be the best daughter of God I can be. Period.: Life is not about comparison, competition, or living up to expectations of others...especially those from me. It was like a catharsis..a cleansing of a life time pressure I created and carried....I no longer need to convince anyone of my worth....I am worthy. I wish this for everyone...I am at peace with PD...and I've peace in my heart. Each day I give thanks for knowing my purpose....and it is not limited to our time here.....I believe there is good ahead for each of us. I've again made a long post....Tom, I understand. Let's both hope there are some lurkers out there who can relate. love the ones you love, NN
  37. 4 likes
    It's super rainy in Seattle today but we have magical nesting hummingbirds sitting on eggs in our backyard!
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    Discussing religions for the purpose of comfort is one thing. Pushing a religion for the purpose of conversion is another. Ninety percent of the content here was generated by Linda in her effort to convert the so called lost souls to the glory of her god. The recent post that bothered me most was the one she posted regarding the scientific documentation that supports her position that LGBT community persons actions are a choice rather than a natural condition of their birth. What has this to do with PWP? IMHO again this forum is no place for this anti LGBT propaganda.
  39. 4 likes
    Both make valid points. Religion and politics often bring on heated discussions. Everyone thinks they are right and no one ever backs down gently. Let's all focus on what this forum is about. We are here to support, offer suggestions, and learn about PD. Life is hard enough without adding more unnecessary stress.
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    By the way, this new site is very confusing to use. Anybody else feel the same?
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    After 3.5 years diagnosis changed to stiff person syndrome. Back on walker now after several bad falls. Finding current medical system care seemingly apathetic. My one wish is to get better, and go back to practicing medicine putting the patient first, always. I would say to any practicing physician to get out and find another profession if you don't put the patient first. It seems to me that the best, brightest and most caring people are shying away from medical training. Regulations by government beurocrats have removed the science and art from what used to be a wonderful profession. Sorry to preach, but this has been my personal observation from both sides....doctor and patient. Thanks for letting me vent. I wish you all the very best. Try not to give up hope...it's too easy to do.
  42. 4 likes
    Bill, this is why my avatar (photo next to my name) has my Golden Retriever. I tell everyone he is my dedicated smiler. My wife for years would ask "are you mad at me?" "Are you upset?" As I concentrate on anything, I forget to smile! It is just the muscle memory isn't there any more, it is still in our hearts, but not "automatic smile" on my face. Worst part is I'll be tired, and sit down for a while. Not only not smiling, but mouth drops open and suddenly I realize I've been drooling. Oh my! There is a wonderful cartoon by Peter Shohls-Dunlap that sums up "the parkie face" -- works great when buying a new car. Drives salesmen crazy as they can not "read" your expression.
  43. 4 likes
    Last night was a full moon. The wash of it came through my window and its light told me all was right with the world. The coyote pack serenaded me and I slept between choruses of that like a fat baby with a bellyfull of milk. A zephyr of breeze fluttered my curtains until I was cooled like a cucumber from the humid daytime heat and I was a perfect temperature all night long. Yess, no cramps, no chills, I never sweated or even got up to pee. If you look up "perfect night sleep in Wickepedia," you would find they profile me. I never even snored, I slept until the sun had been up a couple hours and then sprung from bed, fully refreshed and ready to go. Unfortunately I was still a compulsive liar.
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    Senses Young nurse asked “cedar or or lime?' Nope. “Two outta three, one more time.” Was no smell, I had not lied “you'll take to the grave” It was urgency's time. Along went humor, irony and pride. I think I hear hope packing in the back bedroom. I haven't peeked in, for two remain -other is gloom.
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    Happy Mother's Day to my "good morning" moms.... These are the reasons I won't stop fighting.... LAD
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    I wouldn't call it consise or informative but this is what I posted on my blog April 1st: Happy Parkinson’s Disease Awareness Month April is national Parkinson’s disease awareness month, and since I have Parkinsonism I was planning on doing a big post. A post talking about things like the early warning signs (like changes in handwriting), as well as some of its lesser known symptoms (such as trouble swallowing, losing your sense of smell, and constipation; Parkinsonism is the gift that keeps on giving), then end the post with the fact that yes you can develop Parkinsonism at 32 (your drs are just going to diagnosis you with migraines, myasthenia gravis, an aneurysm, strokes, and seizures before they get around to giving you a pill that makes you vomit twice a day; but hey, at least it takes away your tremors). So I was planning on doing a fairly long post, but then my body went and decided to develop a large ovarian cyst (what can I say, my body does weird stuff; but at least I get great parking). In place of the post I had planned, I will leave you with what I would call my Parkinson’s disease charity, were I to start one: Cure Rotten Awful Parkinsonism Michael J Fox totally wishes he’d thought of that acronym first!
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    pdmanaz, You are not the administrator of this forum, just a user like the rest of us. The administrators have stated that this area is unmoderated. If you don't like the content, then don't read it. It really is as simple as that. If something really offends you, report your objections to the forum administrators. If you want a moderated forum for PD, shell out some money and start your own. This forum is provided to us free of charge. Dave
  48. 3 likes
    I am a talker and I definitely inherited that from my mother. I'll talk to anyone about anything . If I see someone looking at me funny because of something I've done or how slowly I'm moving i'll just say "I have Parkinson's". I've never gotten a negative response sometimes people ask me questions sometimes they don't. If they ask questions I'll always give them a truthful answer. One day One of my husbands coworkers caught her spouse asking me questions about PD. She chided him and told don't ask her questions about her medical condition again . And here I was thinking it was great that now he knew more about my condition because we frequently travel with them so it's been very helpful that he understands more about what I'm going through. Truthfully I think my coworkers spouse knows more about my PD than my own spouse. So really I just want people to ask anything that They don't know or understand. Delta
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    Just a caution about fobs. Carrying meds without appropriate proof of a prescription may be illegal. With us parkies sometimes appearing to be drunk, if a cop searches you and finds drugs in your fob, you could be in for a world of hurt that could costs thousands of dollars to resolve and result in a night in jail.
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    I would not avoid a topic for fear of conflicting views. Everyone should be able to voice an opinion and remain respectful to everyone elses" That is the problem with debate. We as Parky's should address and embrace this topic. Lethe, my fellow Canadian, even though we disagree about legalizing MJ, brought it up. We have only had universal health care for all in Canada since the 60's. It was born from nothing other than need as seen by a social democrat in the Canadian Praries (Google Tommy Douglas) which is actually in a pretty conservative part of the country. As for cost, The American Auto industry realises that our auto workers are better covered at a lesser price than the Americans are under the private system, As Lethe says it is a great leveler of society. The blue chip worker sits with the the labourers in the line. It is regulated by rules with input from the doctors, nurses and society. It has its abuses and abusers as Rn suggests. But if the price to cut out all the abusers is to eliminate care for the marginal segments of society that would choose between an operation or eating for a year, I'll help pay for the abuses., willingly. At the start of this forum stuff I was shocked. No almost embarrassed that I had everything paid for, no waiting for an MRI, or a dr visit cause of a cash shortage. I wished that my friends had the umbrella we enjoy. The underlying argument seems to be that you don't trust the government and I understand that, However I do point out that you trust your government with your military, police, schools, agricultural programs, immigration policy and this lists goes on. Why would you not trust them with this package. There will be some waste, granted. But there will be great things too. I worry about those who don't have coverage and debate medical decisions thinking of dollars. There is a way to accommodate all and I hope things work out. Stay respectful of all is a good start.