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  1. 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
  2. 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.
  3. 4 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.
  4. 4 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!
  5. 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.
  6. 4 likes
    By the way, this new site is very confusing to use. Anybody else feel the same?
  7. 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.
  8. 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.
  9. 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.
  10. 3 likes
  11. 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.
  12. 3 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.
  13. 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.
  14. 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.
  15. 3 likes
    I think I deserve brownie points for even seeing this post. Yes it's very confusing to me as well. I think it's too... busy.
  16. 3 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.
  17. 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.
  18. 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
  19. 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.
  20. 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.
  21. 2 likes
    Adams, your MDS is spot on to what I have read and understood. "Parkinsonism" is the "umbrella" term. (Regular) Parkinson's is under the umbrella of Parkinsonism as is MSA, PSP, etc.
  22. 2 likes
    As I was going through the diagnosing process and DatScan Process, my MDS told me that everyone who is newly diagnosed will get the label of parkinsonism till they have 5 years of history in their medical chart. Then it will switch if your disease progression stays on track with Parkinson's or one of the other not so fun disorders lead you down a different path. like MSA, PSP, ect. At my last appointment I asked about symptoms and my progression. She said that the symptoms I have and my progression so far lead her to say I have Parkinson's with %99 certainty. Since I have only been diagnosed for 2.5 year it will be 2.5 more years till I see parkinsonism disappear off my charts. She stated this was done to make sure the are keeping any eye out for anything different then the usual, she also stated that a dx of parkinsonism does not change treatment or the care I receive. Even with Parkinsonism as my current primary dx I was still accepted into the Steady PD III trial testing Isradipine for slowing the progression of the PD.
  23. 2 likes
    glad to help...next time you do it...close your eyes or say girls names of each letter of the alphabet....build those neuro pathways! This is a great exercise..,I do it every day
  24. 2 likes
    That's just not true. According to her posts, New Normal and her husband have Parkinsonism, which is Parkinson's like symptoms caused by something else. For example, New Normal's husband apparently has Parkinson's like symptoms due to exposure to agent orange. According to the new MDS Parkinson's Disease diagnostic criteria, a negative dat scan is an absolute exclusion for PD. You'll note that this criteria works perfectly for New Normal and her husband. They both have negative dat scans and they both have been diagnosed with Parkinsonism, not Parkinson's Disease.
  25. 2 likes
    I do the PWR4life program and take dance lessons with my husband. My MDS says your mindset and attitude are important in your PD fight. People who have a positive outlook and hope do better. Find what makes you feel good and stick to it!
  26. 2 likes
    Okay, I just purchased a "one month supply" of CDB topical cream, a transdermal option, which I will try for a month and document my findings here on the forum. I may also supplement this with an occasional inhaled "e-cigarette", just to see if there is any difference or added benefit to that method of getting CDB into my system. I chose the transdermal method after a long, detailed talk with the guy at the store, who said that the testing results have been very good, and seems to get absorbed quickly into your body. I apply it to the back of my neck, just below the hair line, 3 times each day. I put some on last night before bed and had my 1st "acting out" dreams that I've had in many many months, so I'm not sure if that is terrible or it means I was sleeping good? I applied it this morning as soon as I got up. There are WAY too many stories about the benefits of CDB (not necessarily PD related) to completely discount it, so why not try it, right? It's not cheap, but it's less than Azilect. Wish me luck.
  27. 2 likes
    Put together a list of treatments that may be available in the future... https://tmrwedition.com/2017/03/23/the-future-of-parkinsons-disease-therapies/ Anybody know any I missed?
  28. 2 likes
    For all intents and purposes it's dead...and has been that way since Linda G. started passing off the chicanery of "Dr." Charles Stanley as the spoken word. If not quite dead yet then it's on life support. DaveN - Spoken like a true bible thumper - Every single one of the sentences in your most recent post is, demonstratively false, my friend. Those about me were also insulting. If you feel like preaching...why don't YOU go and start YOUR own blog/website. Or, we could just be friends and curtail opinions on which we'll never agree and discuss instead, the horror staring both of us in the face, PD. Roger
  29. 2 likes
    Pardon me Dave. I have a right to my opinion as you or anyone does. Dont give me advice on protocal for this forum. I have read far worse on other threads here. Maybe the person responsible for this thread or repeat supporters share some responsibility for the content. I totally stand for what i have writte.
  30. 2 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
  31. 2 likes
    My mom has been on Mirapex for close to 20 years now. It makes her super sleepy but it also takes care of the tremors and rigidity when it's taken with Stalevo. I have decreased it for her over the years and she's not as sleepy but she also doesn't move as well either. I think with all drugs they do wear off eventually. You are lucky that you never had to increase during this whole time and that it worked so well for you. Have you added any new meds recently that could interfere with Mirapex? That could happen too
  32. 2 likes
    Good Evening, Hi Peace, Bard, Dianne, Papa57. Hope your day went ok Dianne. You too Bard, How is BC this week. Avalanches are terrible this year it seems. Papa57, Peace already mentioned it but I wanted to agree with her that you said some very sweet things about your wife.You sound like a lovely couple. And Papa57 and Peace, thanks for the kind words about losing a friend. Bill was a member of the forum that preceded this one. He was a wonderful man and a great poster. Bill was from Colorado and a friend to many people. Peace, you should try some Maple syrup. It is great on pancakes, added to muffin mixes. sweetener for your tea or cereal. Or take a bowl, fill it with vanilla ice cream and pour a good dollop of maple syrup over it . I could go on but you get the drift I am sure. It is full of good nutrients as well. And Happy Birthday Peace. 2 years into PD. Hope you are winning the fight!! I watched the hockey game on TV tonite. Reminded me of Saturday nights 50 years ago when Dad got out the barber clippers and gave haircuts to me and my three younger brothers. We sat in the high chair, Dad with one eye on the hockey game and the other on his hands. Sunday at Church we could show the missing hair when some player got a breakaway. Other wounds included burnt neck from the hot barber clippers and nicked ears. Happy to report that we all survived the Saturday Night haircuts. Have a good Sunday everyone. JB
  33. 2 likes
    FYI: I just discovered the "My Parkinson's Story" videos produced by the VA. I thought they were great.
  34. 2 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.
  35. 2 likes
    Sigh. No one ever did on any thread I was on. Why does draconian cuts to the poor and ill among us bring the president to mind? The issue remains: What type of country do you want to live in? I choose tolerance, compassion for others, and open minded discussion.
  36. 2 likes
    This forum isnt an open or religious forum. The interest is Parkinsons for the benefit of PWP and their support group. Why this thread has been allowed to continue is beyond me. It has nothing to do with my belief system. Christians can always justify inclusion in any group for the pure opportunity of soul harvesting. I know i dont have to read it if i dont like it. That isnt the point at all and you know it. If there was a thread on here for the pure opportunity of supporting the LGBT community you would be the first to complain. Maybe some of the PWP fit into this group. You dont know. I see no difference.
  37. 2 likes
    This was Linda's thread and her "mission statement" upfront was IMO clear. Over 44,000 hits is a testament to the interest (or critique) of topics related to Christianity. There have been some who have questioned why the entire thread is on a PD forum and they are certainly entitled to their opinion. I encouraged Linda to stay on track when she was discouraged over a year ago and I am glad she stayed with it. At the same time I support the right of atheists, agnostics, humanists, and other belief systems to start their own thread on this forum. Everyone has the freedom to chose what they read or don't read if they find the topic objectionable on the "Open" Forum.
  38. 2 likes
    I'm 56 yr old diagnosed with Parkinsons almost a year ago. I was a stable weight for 15 years and during that time tried to lose what I thought was an excess 5 lbs but couldn't do it. In Feb. of this year I started Mirapex. Since then I have lost 10% of my body weight without dieting. I seem to get full faster and do not get hungry like I used to. Has anyone else experienced this? My PCP doesn't seem concerned. My MDS is concerned and asked me to follow-up with my doctor.
  39. 2 likes
    Good Morning All, With our first hurricane of the year gone, all of my family made it through safe and sound. We never even lost power at my house. Many weren't so lucky. The low lying area between Baton Rouge and New Orleans has lots of homes damaged or flooded. My DW and I left for Birmingham yesterday because we're baptizing our new grandaughter today. We've run into several folks who are here because they have no power and/or damage to their homes. You can prepare as best possible, but sometimes, in the end Mother Nature has her way.
  40. 2 likes
    LOVE Not to just be corny...or a cliche. So thankful for love of my wife, children, and others. Their care and patience especially with PD. And, to have them to love in return. And an amazing growth in recognizing the real love of Christ through the journey with this disease.
  41. 2 likes
    MOXIE As with most days, it will take moxie to get through day. perseverance, dedication, tenacity Don't give in keep going!
  42. 2 likes
    Drinking fresh ground homemade coffee right now......... Do I notice any differance ..... No , but it sure tastes good.
  43. 2 likes
    Last night was awesome! I was in New York City. We saw a broadway show, shopped and had a great dinner! I know I walked at least 12 miles in the last 3 days. Delta
  44. 2 likes
    Dancer, I do believe you're right. It is only here that I am understood and heard the way I wish my family would understand and hear me. Nobody should try to do this alone. Thanks.
  45. 2 likes
    This is my first post... I am 53, was diagnosed at 45 and asking for help has been a long time nemesis of mine, also. But, it's not just asking for help, is it? It's not wanting to be a burden, wanting to carry your own weight, needing so to keep up with everybody else--and a whole host of other things besides. I have been through eleven months of nausea, meds that made me lose bladder control for a while, raging insomnia, pain, pain, pain in my muscles/joints/emotions, DBS surgery--you name it--and never once have I spoken with another person who has the same issues I do. As I type, I am sobbing. I have a great network of support in family and friends but, frankly, if one more person tells me how brave I am, or how "you can't tell you even have Parkinson's," or that they "get tired/stiff/achey/depressed/or whatever" too, I think I'll scream until my lungs bleed. I used to be an artist and now I can hardly write my name with any grace--but, what do I hear? "You still write better than 80% of the doctors I know." So, the loss of my ability to paint is effectively dismissed when, to me, it is a searing, gut wrenching loss that I have to learn to accept. And I do so with "humor and grace" everyone tells me. They don't see me now though, do they? I guess what I'm trying to say is, that I understand. I am out here, just like you, bleeding on the inside, smiling on the outside. I cope, by writing poetry. Here's one... Come Morning The woman I dreamed about Last night Created limbs in the ceiling And screaming faces In the wall; She had a child With an unpronounceable name, Her creativity was palpable Her presence Everywhere And unique I so envied her; Wanted to be her Craved her individuality Her colors Vibrant and free As they came to life Rounded and angular Everywhere she walked This woman Had not a care in the world She made things And painted things Had ideas And they happened; And I watched her From the outside in-- Until I awoke In pain And Confused -------------- Anyway, I just wanted you to know that you are not alone--message or e-mail me any time--I'd love to share with someone who truly gets it.
  46. 2 likes
    With all due respect mr Luthersfaith, there are a lot of things in this world that are sick sick sick, but honest sex between two consenting adults is not one of them. I listened to this again thinking id missed something.......where was there mention of wanting to pass on a disease? Have you heard of condoms? Child molestation is sick. Wife beating is sick. Rape is sick. And all these things happen on a daily basis behind cloaks of intimidation and supposed respectability. Here in the uk there have been some very high profile cases recently of vunerable young girls being abused by gangs of older men. These men target the girls.....buy them presents....tell them they love them...reel them in and them share them with their friends. They ruin these young girls lives. They probably played them love songs. Do I have a daughter? Why? Am I a disgrace? Not fit to be a mother? I am an adult who has hopefully taught her SONS respect and compassion and tolerance towards others. Listen to the words and you will hear him say "I don't want to lie to you or break your heart" ....hurrah! I'm not saying this song is for everyone. But please open your ears and your mind before you accuse me of posting sick songs
  47. 2 likes
    I recently did a day long solo hike in high desert conditions in a national park and did just fine. In fact, I found I walked better and faster on uneven terrain than I do in the city. I found the entire experience invigorating and empowering. That said, I think Parkinson's can and does impact each of us in different ways. I used to be fine in large crowds; now I find large outdoor concerts, holiday malls, and crowded airports extremely stressful. By contrast, I find I forget I even have Parkinson's when I am hiking, rock climbing, motorcycling, and bicycling. I try not to let Parkinson's dictate to me what I can and cannot do. Instead, I prefer to try and dictate to Parkinson's what I will allow it to affect. And some days are better than others. The bottom line for me is, if you think you can do it, try it. Sensibly of course. That might mean a shorter hike, bringing extra water, having a more comprehensive backup plan, buying a GPS device, etc. But don't give up just because you have Parkinson's. It may be inconvenient and annoying and limiting in some ways but it is not the end of the world. Good luck and keep enjoying life, Anne
  48. 2 likes
    After entering the healthcare system as a second career, I was truly appalled when I learned firsthand how our system really works. The abuse by EVERYONE - from doctors to lawyers, drug companies to individual patients - is absolutely astounding! I am not a political person and I have no idea how to fix it, but I can assure you that there is no way this system can continue without bankrupting us all. And whether you realize it or not, we already have socialized medicine. In addition to taxes, everybody pays more for their care in order to compensate for the uninsured. However, in my opinion, the problem is not the uninsured, but those on any form of public healthcare (medicare, medicaid, disability, etc) who feel a sense of entitlement and run to the emergency room every time they get a runny nose. Plus the doctors who admit them to the hospital every other week and bill for numerous unneeded expensive tests and procedures just because they know it's a guaranteed paycheck. Plus the lawyers who sue at the drop of a hat that make the doctors run extra unneeded tests just to protect themselves. Plus the family members who bring their 90 year old loved one who has severe dementia and end stage renal disease from the nursing home and insist that they receive open-heart bypass surgery, only to watch them suffer in the hosptial for the last 6 months of their lives. I could go on and on with actual stories of waste and abuse even in my own family, but the point is that it is a multi-faceted problem that runs in a vicious circle. And if we don't do something about it soon, it's liable to ruin us all.
  49. 2 likes
    Hey Stephen Smith, A hearty welcome to the NPF Open Forum! Here you will find a lot of info about PD. Some you can use, other info you just throw out. Because PD is so vastly different from one individual to the next, you'll find yourself "throwing out" a lot of info that doesn't apply to your particular case of PD. I have been a member of the NPF Open Forum since 2002, about 7 months after my "official" dx (diagnosis). Actually, however, I had been living with the progressively worsening symptoms of PD since June, 1976, when a tiny tremor became visible to me and the world. Today, that equates to 36 years of living with ever the ever progressing/worsening symptoms of PD! The reason/s I state my personal length of time with MY version of PD is to let others, like yourself, know that PD is not a "killer" disease, and with the correct medical management a person can survive, and thrive, despite PD. Of course. I'm now an "old" man of 67 and I don't "bounce back" that readily tfrom the variety and varying symptoms PD can pose to an individual. Sometimes on a daily/hourly basis, but I manage nonetheless! Plus, my main objectives are no longer PD related, thus, I'm not "here" on the Forum as much as I used to be. I am now in the deadly grip of stage 4 Emphysema. That illness is killing me. So, be assurred that you are not alone, at all with your PD. There is still a core group of wonderful, caring, and sharing bunch of people here should you have any PD related concerns Stephen. The "road" you are embarking on is a far from smooth one. You will find, in time, that you will find yourself relying on the advice of the "oldtimers" who are here. Why, if you spend enough time here, I can envision one day that you will be "reaching out" to a newbie to the NPF Open Forum! The forum has meant an awful lot to me as I journeyed the PD "road". I hope and pray that you get as much from it as I have, which also includes an awful lot of "Paying Forward" in your interactions with those others that will surely come after you! Good luck and Godspeed my new friend in PD! Jim Evridge "AKA:SILVERFOXX_FIGHTING_BACK"
  50. 2 likes
    It will obviously be awhile before the details are worked out and a clearer picture of what Obamacare entails for the working person. Insurance is like a crap-shoot and yu pay hoping you never need it. Here in Canada as fellow canuk b49 mentioned, health care is free for all. Four years ago when I had the bad reaction to meds I stayed in hospital longer than a week, had 2 health care people for an hour each everyday, etc. I'm now on disability. If i was in most other countries I'd be on the streets now. Our health care is one of the strongest unifying factors, treating all as equals.