• Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    


Popular Content

Showing most liked content since 02/26/2017 in all areas

  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" 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, we hired a retired nurse who also is a professional kayak 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 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 now drawing plans to modify our trailer to make easier mounting our boats... we have done NOTHING for 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 and patient. Thanks for letting me vent. I wish you all the very best. Try not to give up's too easy to do.
  8. 3 likes
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 2 likes
    Hi Emily , It is a nice surprise to see your name up on the forum again. How are things for you.? Hello Dianne, I hope that you are getting through your days okay. I keep your journey in my thoughts. Ella, as I get older, I like to recall my younger years. Not that I dwell in the past, but I did have a wonderful childhood. I didn't truly appreciate it until I was older. Papa57, Goodwork with the maple syrup. I am sure that your gifts are appreciated. It is a lot of work eh? Marcia, happy springtime to you. That could be a good movie. " Happy Marcia's Springtime Adventures." Good days to everyone, jb
  16. 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.
  17. 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.
  18. 2 likes
    glad to time you do it...close your eyes or say girls names of each letter of the those neuro pathways! This is a great exercise..,I do it every day
  19. 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.
  20. 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!
  21. 2 likes
    To share..... Awhile ago, I posted "Drifting..." to initiate a conversation regarding cognitive decline. The conversation morphed into a debate whether I was over dramatizing symptoms. Later I made an effort to create a topic for persons entering 3 or 4 stage PD to allow PWP to exchange support, information, and conversation during transition to advanced PD. That site morphed into discussion of what "stage" meant...and then off topic into personal exchanges. When I came to this forum 3 years ago, I was searching for accurate straight forward discussion of the reality of PD. I found great info, friendly people...i called it a "family.". However, as my needs changed, the "family" seemed to leave the dinner table and move on. Pragmatic people openly discuss and prepare for reality. Reality is offensive to some. For those who are interested in the topic and might learn from my experence, I want to report. Regardless of brain exercises, Q 10, cocanut oil and other supplements, daily exercise, devotion to service to others, personal motivation regimens, and removal of stressors, my cognition and reasoning have declined rapidly in the last six months. Readers doubt the assessment because I write proficiently. That reasoning is precisely why I choose to open the discussion again. Some people have cancer eating away their bodies, yet show few symptoms. The brain deteriorates quietly...behind closed doors. It steathily self destructs while outward signs remain normal. Only the individual is aware....and very lonely...with feelings of isolation and grief. We are experiencing the truth...our capacity is lessening.....we are "drifting" away from our former self.....yet have no one who relates. It is a time when an understanding friend is needed to assist the transition. However, few people are willing and brave enough to openly discuss the process. A partial list of my symptoms include short term memory loss, incorrect word substituion, cannot follow directions, short attention span, cannot multi task, cannot follow a narrative...such as a movie or article. I cannot defend or describe the degree of impairment. Cognitive assessments affirm symptoms. And they are life changing. I no longer feel I could safely live independently. However, I still drive while with DH and have no problem with reaction time or reasoning. And I have been able to travel alone by air. Anyone regardless of age or chronic disease will have these symptoms. However, i know there are other forum members further down the path of PD who will relate. They understand spades....what I am describing. When symptoms become transparent...and the deficiencies are exposed to one's entire NEW transition occurrs...begging the need of compassion and understanding. Yesterday, it took over 5 minutes to pay at a grocery store counter using a debit card. A call to DH, patient clerks and fellow customers, and finally tears before I could complete a familiar process. As I left, the following customer said to the clerk, "I understand, we all have mental problems." Ouch. The young carry out woman consoled me and asked if I was ok. "Its just that I remember when I was smart." At that point, I received a message intended just for me. In casual conversation to divert from the situation, I discovered 20 years old...was going to hurry home to make Thanksgiving dinner for her parents...since her mother has mental illness and her father has one arm. She went on to say ahe would have to cook at the neighbors since she could not afford propane this month. Hmmmm...i needed to hear her story. People dont see our baggage...and we dont know what others are carrying. We all have to just survive and hope we leave this place in a better state then we found it...and we have become better people. I know this is long...I have gotten your point. I hope this is helpful to someone. NN
  22. 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.
  23. 2 likes
    Put together a list of treatments that may be available in the future... Anybody know any I missed?
  24. 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
  25. 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.
  26. 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
  27. 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
  28. 2 likes
    Hello everyone, Haven't posted in awhile, been busy watching the snow fall. Got almost 2' here! I like winter though, so I welcomed it, this is how Winter should be in New York. I think it is one of the most beautiful seasons. I so enjoy the change of seasons and feel slighted if I don't see them all to the fullest. Although, Fall is my very favorite, Summer my least. Jb, My childhood seems to come up a lot lately in my mind too. Funny, you should say you were looking back 50 years, I just did the same thing the other day.......thought to myself, "gee, 50 years ago we moved into the house I live in now." I was 9 years old. Seems my childhood comes up a lot in my mind lately. I enjoy thinking about it. I like your story about the hockey game and haircut nights. It's 1:30am, one of those "sleepless" nights, I'm afraid........
  29. 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
  30. 2 likes
    Good Morning Everyone Hi Dianne, How are you doing today. Any headway with a new pump? Sheila, sorry that you didn't get some snow. There was plenty to go around I'm sure. Maybe next year. Well, it is St. Patrick's Day. I will hoist a pint to all the Irish here later today. I will take a minute to remember an old friend that used to be a solid fixture on this forum. He died too young and many of us miss him. He loved his wife and family, men and women in Service, Notre Dame University football, and his Church and God. Bill, I know that you are watching over us. Happy St. Patricks Day to you. And to all of you., jb
  31. 2 likes
    FYI: I just discovered the "My Parkinson's Story" videos produced by the VA. I thought they were great.
  32. 2 likes
    Patriot, you may be right. I don't know. I know with my DH with Parkinson's, we have not overused the system. We are on Medicare and not Medicaid. He has had home health care and he is now on hospice, but managing without it would have been extremely difficult to impossible. I rarely see a doctor even with no co-pay with Medicare and a supplement. In fact, I probably wait too long to see a doctor which creates its own set of problems. I don't know people who overuse the system. There are likely some, but how many, who, and why, I don't know. There are trained researchers who can compile this information. My son is a Ph.D Medical Bioinformaticist working for a hospital. His job is to research whatever the hospital needs in regards to patient care and costs. We operate on personal observation and assumed information and neither may be accurate. When we get serious about quality healthcare for all and compile provable information on which to base decisions and policy, we will be much closer to a workable solution.
  33. 2 likes
    Hi guys. Discussion has obviously been discouraged, but this is important. You may or may not care about the 14 million losing their insurance next year, (and yes, I will be one as I am in the open market and am in my 50s with a pre-existing condition), but the following year, 2020 is vital. That is when the 880 billion permanent cut occurs of Medicaid (corrected, see below) funding, and coincidentally, the same year an 880 billion tax break is given to the extremely wealthy. Nursing homes will suffer. No more opiod addiction treatment. No more PT, except for immediate gain (broken leg, post surgery). Read the CBO report. It is interesting. Good luck. ETA--sorry, sorry, sorry. I spent so much time working out the correct figures, that I wrote "medicare" not MEDICAID. I've corrected the post. My apologies.
  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
    There has been no discouragement of discussion relevant to Parkinson's disease. Health care and insurance is obviously relevant and, in my view, therefore, welcome.
  37. 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.
  38. 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.
  39. 2 likes
    I am slowly changing my opinion of the CDB cream I am using.....maybe. I now think I am seeing some overall improvement in how I feel. It's slight, yet noticeable. I will wait a few more days before giving it a total thumbs up, but I am cautiously optimistic.
  40. 2 likes
    Don't the powers that be know better than to change things for us Parkies? I am getting too old to learn new ways. Life is good, there might be one or two snowflakes this weekend in North Georgia! I get excited when it does since it is so rare down here. (Damn, where are the emoticons?) Found them! Have a lovely weekend, y'all! Sheila
  41. 2 likes
    Good Morning, Wow, this forum looks brand new. Oh, it is still the same. Type 10 characters and correct 4 of them. Hi Marcia J, Dianne, Peace and Shera. I have not been posting much of late. I seem to be too tired to sit down to write in the evening. And too busy first thing in the morning. Maple syrup season is here. It is not exactly good weather for it . No consistency to it. I still need -5 C nights followed by +7 C days with sunshine to trigger the good runs. It remains a big job to collect the sap and boil the water out of it to the proper density of maple syrup. My body protests against the added work, but I can still do it. (Pass the Advil please). We have made 15 litres of syrup so far, and there is more on the fire boiling. Marcia, that is nice that you are getting more Grandbabies. It is nice that you make effort to protect their health, but I don't think that you have to get a whooping cough vaccine every year. Peace, I love the big garden story. Man, I have started to plow just a little patch bef. ore, but when those slick furrows start turning over it is hard to stop. Dianne, I still hold you in my thoughts every day. I hope that the hurt is slowly getting sorted out, thought about and reconciled in your mind. Shera, whazzup? Okay, got to get going here. Good days to all. jb
  42. 2 likes
    I read something this morning that has given me pause, and I thought it might interest people on this thread. (Including you, Linda. I hope, as do so many others, that this is a technical problem only) This is a quote from Leonardo Boff, which was put forth on "Inward/outward" this morning: "Falling Down Falling is not just a physical accident. Falling means recognizing freely and sincerely the limits of our strength in the face of situations that are beyond us and force us to submit. Falling shows our human frailty. It reveals the fragile clay of which we are made, showing us that we are neither omnipotent nor invulnerable. Confronted with such a fall, we may nurture a spirit of revolt...Or we may nurture a spirit of resignation...There is a third possibility, however: We can nurture the spirit of humility. While calmly accepting our fall, we may still trust in God, whose strength comes to reinvigorate our weakness, and get up again with renewed courage." I have thought about this all day. I hope I can have a spirit of humility the next time I fall with my PD.
  43. 1 like
    BTW, are right...I thought we had PD just up to a few weeks ago. So I was on the side that DaT scans were not always correct. I am kinda confused now, because PWP with negative scans are numerous...and it would be unusual for them all to have MSA or PD+. As I said earlier...epilepsy at one time was dx of numerous seizure disorders that now can be categorized. Mental illness is now a term for many dimensions. .With research, maybe PD will have additional subsets... which leads us to more definitive avenues for a cure. 😊👍 Hugs to u, Swamper. NN
  44. 1 like
    Hi John, As I've said on another thread: "The issue is actually Medicaid. A $880 billion permanent cut to short term nursing home care (after hospitalization), long term nursing home care, respite care, physical therapy, home health care aides, hospice and respite services, hoyer lifts and hospital beds for the home, wheelchairs, drugs. That's just for the PD population. If you want further info for addiction services, psychiatric treatment, children's coverage, pregnancy, homeless vet care, go to The issue is the deep cuts to the elderly, sick, very young, and disabled among us." The AHCA is important, as the major purpose is to remove Medicaid. All Americans, whether they know it or not, use Medicaid in some part of their lives. Let your Representatives know what you think, however you think.
  45. 1 like
  46. 1 like
    I've been on Neupro since the day of dx. Started at 2 mg for the first 2 weeks, then went to 4 mg. That first night I put it on at 11; when I got up at 6 AM, I barely made it to the back door for the dogs without passing out. Felt like I was dying: couldn't see, extremely nauseous, dizzy, cold sweats, almost hyperventilating. Somehow, I managed to eventually regain my composure enough to feed the dogs, get dressed, & drag myself into work. The nausea continued strongly the first month. I lost 10 lbs, but I've unfortunately managed to find it again recently, probably thanks to mj. Also since day 1, I can't brush my teeth without gagging, although it's not nearly as bad as in the beginning. My stomach is weaker than it ever was, but that is only minor. All in all, I love my Neupro patch; I hope I never have to give it up! Two weeks into treatment, a close friend/coworker told me she wished she had taken video of me because the difference in my walk was unbelievable. Many people on here knock the agonists, but for me, it was like a lifeline when I was drowning in the agony of PD.
  47. 1 like
    I have been on the patch for about a year. Started very slowly, and only recently went to the 4 mg dose. I think it has helped smooth out my on times. It certainly helped me to sleep better--I routinely get a good 6 hours of sleep a night. I have mild nausea, which I manage with omeprazole twice a day. The itching is a nuisance, but not severe enough to stop the treatment. All in all, I am happy with Neupro. Hope this helps.
  48. 1 like
    The issue is actually Medicaid. A $880 billion permanent cut to short term nursing home care (after hospitalization), long term nursing home care, respite care, physical therapy, home health care aides, hospice and respite services, hoyer lifts and hospital beds for the home, wheelchairs, drugs. That's just for the PD population. If you want further info for addiction services, psychiatric treatment, children's coverage, pregnancy, homeless vet care, go to The issue is the deep cuts to the elderly, sick, very young, and disabled among us.
  49. 1 like
    The issue here is whether a person can wait until they're seriously sick to obtain insurance. Can a person wait until their house is on fire to obtain fire insurance and then expect someone else to pay for it?
  50. 1 like
    i read your discussion by BASTIAN BLOEM about the man who could ride a bicycle, but could barely walk. i have pd and i have trouble walking, but i can dance and i can do qigong and tai chi. i have been a dancer most of my life and a dance therapist and bioenergetic therapist . in other words, i have had much experience with movement. strange that i would wind up with a movement disorder. i would like to share that although i have had awful experiences trying to sleep and not being able to and being very agitated, even with medicine, though helpful. the practice of qigong, a fifteen minute practise, mainly bending and touching the ground with my fingers and breathing mindfully, i can sleep , and sleep much more restfully. not a hundred percent, but perhaps 80 or 90%. i would like to share this with dr. bloem. s. kossoy