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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. 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 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
  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 ...in spades....what I am describing. When symptoms become transparent...and the deficiencies are exposed to one's world...an 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 she...at 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... https://tmrwedition.com/2017/03/23/the-future-of-parkinsons-disease-therapies/ 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
    You might try a photo album with the names of persons and date taken (or age) in large lettering beneath the pictures. Include lots of old photos that may rekindle some old memories and some recent photos that might help him recognize newer family members. My Mom ( memory loss but not PD) liked looking through them on her own and enjoyed it when family members looked at the photos with her. Music, especially music that was popular during their youth. The difficult part of this is getting a play back system that your dad can operate. Might have more luck listening with him and you playing or operating it or perhaps asking a nurse to help him with it. mara177's suggestion of sing-a-longs and live music is excellent. You might inquire at your church or other groups (4-H clubs, scouts) if there would be someone wanting to do some community service. Does a family member play guitar or piano? When your dad visits your home you might want to have a family sing-a-long. (My Mom loved this) Or, perhaps as a birthday present you might want to cough up the money and pay a local group or musician(s) to perform at the health care facility. My Mom loved to just take a ride in the car. It didn't need to be any place in particular, just a chance to get out and look at the scenery - maybe a stop for ice cream or something to drink. It is difficult watching a loved one slowly disengage from life. I could be wrong but I think is was harder for me to watch than it was for my Mom to experience first hand. Many times she was content to just sit back and watch. She sometimes seemed happiest just sitting on the front porch listening to family or friends talk or for someone to just hold her hand.
  44. 1 like
    This sounds similar to the "safe response" I got from my docs. They would only caution me about the generic and broad misconceptions of cognition and paranoia side effects (the Reefer Madness mentality). Most doctors are clueless about marijuana so they provide the overly cautious answers. I would ask...what is causing the cognition and hallucinations problems now? Is it the medications? Could the marijuana help? Maybe. you never know till you try. There are so many options and strengths now. It's no where near as harmful as L-Dopa! I have used marijuana all my life. It did not effect my cognition nor given hallucinations. In fact as I sit here, I am struggling with the light headed floating feeling from my increase in dosage of Nupro patch. It's worse than marijauna side effects. EDIT: just to note that since I started on Parkinson's meds, my need to use Marijuana has declined probably 95%. There seems to be some correlation there. Marijuana does help me and others. good luck!
  45. 1 like
  46. 1 like
    Lad, i found an MDS, out of my area, who will take self referrals. It's funny you mentioned to use the ask the doctor forum since i posted a question in it earlier this wk (not answered yet) about how to get neuro to take my symptoms seriously. Thanks again!
  47. 1 like
    I have not experienced this, but i know there are other medications to be tried if that one does not work for you. Some people find the Neuro patch helpful Shirley
  48. 1 like
    I do the Rock Steady Boxing program. LVST BIG was great, but after a few months I wasn't doing the homework. To get an idea what we are doing in Rock Steady Boxing - Austin, take a look at their instagram. Every workout is different, coach is working with a bunch of trainers & PT to get idea's how to mix things up. One thing we do is most of use are in socks (MMA use gym, so keep your street shoes off the gym floor). I wore 'ankle boots' as my ankles were so weak. Standing on that blue BOSU ball is hard, but make you use ankle muscles! I'm doing much better now than two years ago! Marcia and her husband were in town, and sat in one of our classes. I did tell her this was the "level one" fighters, but pretty active group. Rock Steady Boxing around the country varies (I've heard back some -- some locations just suck as they do the same thing every workout. Boring!) https://www.instagram.com/rocksteadyaustin/?hl=en
  49. 1 like
    @NN: None of us is a neurologist and we cannot possibly suggest any diagnosis. We are just patients, and nothing more. Our knowledge is based on personal experience alone. That said, from what I've read and what I've experienced myself as a patient, I don't understand why a diagnosis of MSA is even likely to a patient like you. 1)Datscans are typically positive in patients with PD-plus syndromes. You have had a series of normal Datscans arguing against the presence of degenerative parkinsonism 2)MSA is typically and in the overwhelming percentage of cases a rapidly progressive disease; most patients are bed or wheelchair-bound within the first 5 years. ALL functions are severely affected, including the ability to talk, write, communicate. Thankfully, you don't seem to share none of these aggressive features. 3)MSA responds poorly to levodopa. Levodopa response in MSA patients is typically medium at best and transient. Any patient responding well to this drug after 4+ years of treatment is highly unlikely to have MSA. 4)MSA is characterized by severe symptomatic autonomic impairment. That's the reason MSA patients can't stand up, walk, perform normal activities. Subclinical evidence of autonomic dysfunction, documented by diagnostic testing, does not suffice for a diagnosis of MSA, and is non-specific -found in many neurological and other diseases. I have used the term "typically", because it must of course be emphasized that there are exceptions to the above clinical presentations, with slower progression, better response to levodopa and "milder" symptomatology, but, again, I highly doubt you fulfill the diagnostic criteria. NN, I really hope you don't have MSA, I don't believe you have it, and urge you to ask for another opinion from a MDS. I remember that both you and your husband have a positive history of Lyme. Has neuroborelliosis been ruled out? (now, THAT's a diagnosis almost impossible to pinpoint..).
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    Good Day, It always is nice to see your posts Mihai. I first started to listen to You on the YOPD forum, many years ago. I remember one of your posts where you told us about trying to do up a top button on your shirt to get ready to go to church. You were frustrated by the fact that your fingers couldn't complete that task and you had to ask your wife to do it. My first thought was I don't have trouble doing up buttons. I was younger and stronger 10 years ago and I could hide my symptoms quite well. I entered my PD years feeling that I would not let this drag me down. I was 49 when I was dxd and I was pretty sure that I was likely the youngest person in the world to get Parkinsons. Joining the YOPD, I soon realized that there were many people with PD who were a lot younger than me. They had young children to raise and were affected by symptoms much more advanced than what I was experiencing. I am grateful that people like you Mihai, (Brooksie, Bill, Reverett, Paper Bag Princess and many more as well) who took the time to research, did the fact collecting, posted encouragements, steered people to new techniques and were a solid source of knowledge and experience of what I would later discover happening and say to myself oooh! this is what they were talking about. Thanks Mihai for doing what you do and have done for us all. Now, to get to what you were asking Mihai, I wish this. I had the great luck to be born into a wonderful family. Mom is still with us, I have 2 older sisters and 3 younger brothers. All of them are caring and generous and I love them lots. I have had Parkinsons for 10 years now but I don't think that they could pass a basic quiz about this disease. They ask how I am, and I have always said fine. They can see my hand shake, they know that I don't go to work anymore, and they know I take a bunch of pills. They don't understand the medication, or the brain rot, non motor symptoms, the difficulty of rolling over in bed and pulling up blankets, They don't know how I view my future years. It is partly my fault. They ask how I am, and like most of you, I say I am fine because, as others have said, that is the correct answer. The one that they want to hear.. I wish this: Following a family gathering, the next day one of my siblings would say, John, we can see that PD is getting more difficult for you. We don't really understand that much about the disease and what you go through. Why don't you write us a little outline of Parkinsons. Tell us about the symptoms you have, the other things that happen, what drugs you have to take. Tell us what we can do to help and how you see the future years. Yes, and for that wish to work, I would have to refrain from saying, like we all do, "I'm ok, don't worry about me"