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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. 7 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
    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.
  4. 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.
  5. 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.")
  6. 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.
  7. 5 likes
    Hope everyone had a good day...I follow another online PD site ... this is the pledge....works for me!
  8. 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.
  9. 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
  10. 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!!).
  11. 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!
  12. 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!
  13. 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.
  14. 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
  15. 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.
  16. 4 likes
  17. 4 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.
  18. 4 likes
  19. 4 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
  20. 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.
  21. 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
  22. 4 likes
    That statement would only make sense if someone asked for your opinion right? Looks like BIg Brother is watching very closely now.
  23. 4 likes
    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
  24. 4 likes
    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
  25. 4 likes
    It's super rainy in Seattle today but we have magical nesting hummingbirds sitting on eggs in our backyard!
  26. 4 likes
    Check these exercises for hands
  27. 4 likes
    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.
  28. 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.
  29. 4 likes
    By the way, this new site is very confusing to use. Anybody else feel the same?
  30. 4 likes
    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.
  31. 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.
  32. 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.
  33. 4 likes
    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.
  34. 3 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.
  35. 3 likes
    Oh boy. I have nothing but sympathy and warmth to send. I have cared for 2 parents at this stage of life, and it was wrenching. I have watched and helped my friend with PSP go through this. Hang on. Take walks. Ask people to come in and sit for 20 minutes so you can run and get a cup of coffee somewhere OUT of the house. Talk to the hospice people. If he is in pain, can they up his pain medication to make him more comfortable? There are risks to that (depressed breathing, addiction) but it may be worth exploring. Meditation for you may help. Classical music playing softly in the background can also keep your spirit calmer as you go through this. Reaching out to friends, I hope you know you can pm me at any time, and I will respond with warmth, sympathy and respect. Deep breaths, this must be the hardest loss of all. Certainly my experience is a very pallid reflection of what you are going through. We're all here to help in whatever way we can.
  36. 3 likes
    Hi Linda, Thank you for finding this. I really want to respond respectfully. Here it is : EEK! EEK! EEK! Okay, on a serious level, The PC discussion is good, but this Donald Frost is a shill for other interesting ideas. Specifically, did you know that Barney Frank and Barack Obama were responsible for the financial crash of 2007? Or that the Bundys are non violent patriots? So let's step back and just look at some of what the article suggests. "Political correctness is very appealing to many people, in large part, because it demands--not requests--kindness from others." Well, yes, except for the 'demands'. In my way of life, PC requests that if we have a discussion on an issue, belittling the other person is not helpful, and therefore should be avoided. If someone says something I think is non "PC" I have a right to respectfully ask that person to clarify their statement, as it makes me uncomfortable for X, Y reasons. If they respnd, great! We can have a discussion, and both will learn about the others viewpoint. If the discussion is refused, well, that is the refuser's loss. We cannot learn, unless we all consider other people's point of views that make us uncomfortable. Frost here is using a nifty logic trick, take "requests"t and turn it into unreasonable "demands", and then label the whole concept as a tool of "the ultra-liberal hierarchy for the purpose of achieving power." I do indulge in PC speak. I ask that people do not make personal attacks in my presence, consider other people's viewspoints as valid and not belittle those viewpoints, and treat everyone as fellow human beings. Pretty radical, huh? And no, I do not believe I am "an elevated human." I just try (and hopefully occasionally succeed) at being a decent member of the human race. I am not sure that I can say the same of Donald Frost, who writes a lot of letters to the editor which point out grievous faults in others, but never solutions or compassion.
  37. 3 likes
    Substituted in a classroom today. I had the kids doing my coordination exercises. They cracked up! They asked me why I needed them and I said I have Parkinson's. They were like "ok so....what's next? " it was fabulous....no poor you puppy dog eyes ...just get on with the brain teasers Mrs. D! Gotta love kids!
  38. 3 likes
    And it's dark out. And getting darker. But no matter how dark it gets it is worth it to stand in line for the famous JB maple syrup. Someone else in line is singing a beautiful song while I cook pan cakes on the griddle. The griddle is on a table with wheels. So I cook as I roll. And I yell out, "Who has number 300,000." Someone in line throws up his hand and I flip that stack directly into his palm. Just in time to also get his maple syrup also. Some people had waited in line since yesterday and slept in line in a sleeping bag. Some people are here so long that I give them little chores to do. Hey, you want the maple syrup so badly that chores does not phase you. You'd much rather he had the extra time to make that syrup. Except the season is over but JB saw ahead and made much and selling it now cause these people know their syrup. A number of Parkies are in line too. When we get to the next in line we say, "Oh I forgot something." and run back to the end of the line tugging the griddle behind me. It was so much fun that I decided to stay in line. That has to be a record. Then I float and something stopped the train of thought and open my eyes and realize it was a dream. And if you believe that one I have a swamp I could sell you. Or is it the London Bridge. I think they both are not available.
  39. 3 likes
    Well that says volumes about you, that you took my post in a negative manner. I could have said LOL because I agreed with you and thought your post was funny. On the other hand, I could have said LOL because I thought it was total hypocrisy on your part for polluting a thread about health insurance with your personal ideology. Either way, you polluted a thread. Not far in the past, you started a thread on Christian Faith that was polluted by a few non-believers. You didn't take it well, and I didn't think it was necessary either. What does impeaching Trump have to do with Healthcare questions? CNN, MSNBC, Fox and many others have political threads. Let your frustrations out there. Here's a hint: Nobodies minds will ever be changed. And yes, our political situation is in dire straits, but I didn't think this board was where I would have to encounter the endless blabber I see everywhere else! If you want to start a personal, political dialog, feel free to message me so it stays off this board. If you want to start a Christian dialog about judging others or casting the first stone, I'd also be happy to entertain you.....Keep it fair and civil regarding the intent of the thread. Is that so hard to ask?
  40. 3 likes
    Thanks. The one thing that went well was the programming. I got programmed the day before I went to the hospital and it worked great! So, at least I got a taste of how well it can work for me before I decide to risk it again
  41. 3 likes
    Good morning everyone, It is the last week of March, the month of deep thoughts as I watch maple sap change into maple syrup as it bubbles on the boiler. The month of change and preparation for the year 2017 that has only smouldered thus far, ready to burst into a fresh flame of springtime glory. The calendar page will be flipped at the the end of the week to release April with its hopes of a budding Springtime. It will bring with it new Challenges for us all, but also with its hopes and expectations of an easier time of the year. April will let us know she is here with warm sunshine on our backs and gentle breezes brimming with scents of warm soil and promises of new growth to our eager senses. Even the birds gathered around the feeders sing in excited chirps as they discuss new nests, fat earthworms and how their winters in Florida went; like a group of people standing around the watercooler discussing their weekends. Ella, I think that I have more time to consider my past now. I am not going to work anymore and my thinking has become more clear. Even if my short term memory isn`t as good. Good morning LenaMegan. Wow, you were lucky to get a picture of the humming bird babies. Thank you. And LAD, welcome. back I have seen that you have been busy posting on the Forum and that is good. Positive thoughts and reinforcement are very important as we deal with this Parky thing. I hope that you had a good weekend Dianne. Everybody have a good week.¸¸ jb
  42. 3 likes
    Your Dad may be fully content in his present state. I've become sedentary and it annoys me when well intentioned relatives and friends bug me to be more engaged and do stuff with them. As Genden noted above, rule out depression which is treatable. Having done that, let him decide what he'd like to do and don't feel guilty - sounds as if you are doing a great job.
  43. 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
  44. 3 likes
    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.
  45. 3 likes
    Isn't it interesting how our perspectives differ? Unfortunately our health care is directly influenced by politics. Wouldn't it be wonderful if all of those in positions of power would sit down together, pull together the best information from those who deliver healthcare, those who receive healthcare, those who research healthcare, costs, outcomes, etc.. with the ultimate goal in mind of delivering good healthcare to everyone and come up with a solution, taking politics and self interest from all sectors out of it. If this happened, most of us would accept, agree, and be happy.
  46. 3 likes
    I'm sure glad we can all agree on this, as I for one don't come here to read a bunch of political claptrap.
  47. 3 likes
    At the end of a long and tiring day, I look forward to going to bed and getting some sleep. But rather than being a place of solace, my bed becomes the site of much torment and torture. It always starts the same - lying on my left side for the first ten minutes or so, then lifting my body in some strange way in order to turn to my right side for another ten minutes, followed by rolling to my back. As the minutes tick by, my mind wanders in rapid succession from conversations that I had throughout the day, to what I would like to accomplish tomorrow, to what maintenance needs to be done on my truck and each of the steps necessary to accomplish it. "STOP! Clear your mind," I tell myself. "Count backwards from 99 to 0. Okay. 99....98....97...I wonder if I adjusted those brakes properly. Maybe I should jack the truck back up.....UGGGHH! STOP! 96....95...94...If I get up early, maybe I can get the grass cut before it rains. I really should buy some fertilizer...93, 92, 91..." And on and on it goes. By this time I've returned to my left side and the whole cycle starts again. Sadly, however, things begin to get even worse. The three toes on the outside of my right foot start to curl downward, followed by both of my feet drawing down as if they're trying to get into position to do some kind of extreme ballet move where the dancers walk on just the tips of their toes. My calf muscles strain to pull my feet into full submission before I actively pull them back the other direction to stop them from their relentless progression. Unfortunately, the relief is only temporary as my calf muscles go back to their dirty tricks as soon as I start to relax once again. Finally, after an hour or more of this torment and just wishing I could go to sleep, my Klonopin, Lunesta, and Celexa finally kick in and somehow I manage to drift off to sleep. Victory at last!!! Well - not quite. The cramps continue to wake me up periodically throughout the night, and it seems that I can no longer escape having to get up to use the restroom at least once. But, given ten to eleven hours of "sleep," I can wake up feeling reasonably rested and refreshed - and therein lies the strange relationship. As I wake up to begin a new day, the sheets feel soooo good! The bed is warm and soft, and other than the soreness in my calves from a night of "ballet dancing," my body is not hurting, the tremor is temporarily gone, and if only for a moment I can remember what it felt like before I had PD. Oh, I do NOT want to get up! What started out as the site of my torture just hours before has truly become a place of peace and comfort. It's really strange how something can be so utterly uncomfortable one moment, and then feel so good just a short while later. However, all good things must come to an end, and so the moment quickly fades as it gives way to hunger. Sliding to the edge of the bed my feet hit the floor after nearly twelve hours since I took my last dose of medication, and I begin my usual morning shuffle to the bathroom. That's when Mr Parkinson shouts out, "HELLO! I'm still here!" Once again my body is slow and stiff, but at least I've been blessed to see another day - even if it means another battle. And so my strange relationship with my bed continues on. I look forward to lying in it every night, but almost regret it when I do. Yet, with reflection I have come to realize that my bed is certainly not at fault, as it is only a witness to the nightly battles between Mr Parkinson and myself. Perhaps that is why it is so comforting each morning when the nightly battle is over - it's the only one, other than myself, that knows what I go through each night. Perhaps it is saying, "You made it through another one, but I'll see ya' again tonight." Yes sir...my bed and I sure do have a strange relationship.
  48. 3 likes
    Okay, here's a great example of how my anxiety goes up, and I tend to think the worst, especially at nighttime - when I saw the name of this topic, I thought, "Oh my, somebody's really upset about the Work/PD post..." I think I'll just go to sleep, and try again tomorrow. Sheesh. Janet
  49. 3 likes
    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.
  50. 3 likes
    In Canada, we all enjoy a complete health care package, regardless of employment or position in society paid through taxes. Delivered throughout the country to everyone. I could not imagine living without such a program. Perfect, no. But a very comforting way to live. I hope yours grows to be acceptable to all.