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  1. 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.
  2. 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!
  3. 3 likes
  4. 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.
  5. 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.
  6. 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.
  7. 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
  8. 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.
  9. 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.
  10. 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
  11. 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.
  12. 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!
  13. 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
  14. 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?
  15. 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
  16. 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.
  17. 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
  18. 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
  19. 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........
  20. 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
  21. 1 like
    I have read in many places that MSA and PD + will initially show an abnormal DATSCAN, however definitive diagnosis of MSA & Pd+ may take years to confirm after initial diagnosis of Parkinsonism from DATSCAN (as Adam's MDS stated.) This does not sound like what your MDS is telling you NN..........? Sounds like he is saying people that eventually get dx'd with MSA have had "normal" DATSCANS....... Now, I'm confused........
  22. 1 like
    Thanks for clarifying that, nn and patriot. I stand corrected. Swamper
  23. 1 like
    I've had 5 DaT scans... all negative. DH (husband) had negative DaT scan. Both of us responded to Gold Standard for PD by a positive reaction to L dopa. Neuro/MDS dx'd DH with "Parkinsonism". He has firm commitment to DaT scans. I asked him, why we had significant PD symptoms, positive response to l dopa...and neg DaT scans. He smiled and said, "Sometimes it takes awhile for the scan to catch up to the disease." ( Or vise versa. ) I thought his answer was silly. He has a great history and a list of achievements including administrating DaT scan departments for Mayo Clinic. I respect his assessment. DH exhibits all PD symptoms but is dx'd "Parkinsonism" likely caused by Agent Orange...an herbicide used in Vietnam to defoliate miles of coastline. He has developed neuropathy in many areas...not typical PD. He has several additional odd diagnoses such as bilateral trigeminal neuralgia which seldom occurs ...like never. So, according to Neuro, DH does not have traditional PD, which explains negative DaT scan. Neuro refers to my dx as "parkinsonism" also. I am developing different symptoms from normal PD. Neuro says it is likely caused from a different part of the brain. I now understand why the term "parkinsonism" is occurring often in medical papers and MDS/neuro offices. . Neuro appears to be correct for both if us. The DaT scan discussion continues. PD is unpredictable, so we never can be certain of anything...including DaT scans.. We all know it is a designer disease....each of us is unique. Most important is to be the best you can be, exercise, find joy in every day...look for ways to help others...and the rest takes care of itself. (Smile) Love the ones you love. NN
  24. 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.
  25. 1 like
    Nope. My mom has severe dementia so she won't swallow her meds which is making things worse. She is taking as much as she can tolerate but it's not enough to give her much strength and as she ages PD is kicking both our butts. Thanks for asking.
  26. 1 like
    Hola, Existe un grupo de enfermedades que llamamos parkinsonismos atípicos o parkinsonismos plus, ya que tienen algunos síntomas similares al Parkinson. Entre ellas esta el Sindrome Corticobasal. Este sindrome se caracteriza por tener parkinsonismo de predominio unilateral, a diferencia del Parkinson que involucra ambos lados, además de sintomas corticales como apraxias, afasias, fenomeno alienigena, o sintomas cognitivos y psiquiatricos. Estos trastornos tienen una menor respuesta a levodopa y progresion mas rapida que el Parkinson. Saludos, DMR
  27. 1 like
    About Xadago (safinamide) Safinamide is a new chemical entity with a unique mode of action, including selective and reversible MAO-B-inhibition and blocking of voltage dependent sodium channels, which leads to modulation of abnormal glutamate release. Clinical trials have established its efficacy in controlling motor symptoms and motor complications in the short term, maintaining this effect over 2 years. Results from 24 month double-blind controlled studies suggest that safinamide shows statistically significant effects on motor fluctuations (ON/OFF time) without increasing the risk of developing troublesome dyskinesia. This effect may be related to its dual mechanism acting on both the dopaminergic and the glutamatergic pathways. Safinamide is a once-daily dose and has no diet restrictions due to its high MAO-B/MAO-A selectivity. Zambon has the rights to develop and commercialize Xadago® globally, excluding Japan and other key territories where Meiji Seika has the rights to develop and commercialize the compound. The rights to develop and commercialize Xadago® in the USA have been granted to US WorldMeds, by Zambon *Information provided by the FDA Website
  28. 1 like
    Day 3&4 on 4mg since I was having good results at 2mg, we decided I could try 2 patches. Yesterday started out pretty shaky and hyper but calmed down in the afternoon. I did a little testing with the mPower app. The tapping test were done just before a regular dose of sinemet and also a couple hours after. I could see where there is less fluctuations with tapping counts. The patches seem to keep me at more of an even keel. Here is a screenshot of the results
  29. 1 like
    Hang in there Luke. Dont worry to much about what they call it. Just treat your symptoms. My first doc would have never said I had Parkinson's based on my symptoms. He gave me sinemet and when it helped, he was perplexed. "I don't look like Parkinson's " so he scheduled the scan. the REAL determination of Parkinson's was realized when the sinemet worked for me. The scan was nice for a backup.
  30. 1 like
    Objection noted New Normal. This is a Parkinson's Disease forum for discussion of relevant issues. That board censors shut down Linda's bible thumping propensities was a welcome relief to us nonbelievers.
  31. 1 like
    I had a DATScan a couple of years ago which was deemed as being normal. I like most others can check off PD symptoms going back for years. I moved, was seen by a new set of neurologists. And sent home with C/L after four neurologists spent a hour examining me, with a follow up to a well known MDS a few weeks later. When I asked her about the normal DATScan she laughed and said she trust her experience and the gold standard four symptoms and positive response to C/L. She also stated I should have been diagnosed way before the time I was
  32. 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!
  33. 1 like
    I've been looking at these Trionic things. I don't need one yet, but I like the larger wheels so you can go on grass and off-sidewalk. I'm sure they aren't as great as they are made out to be, but I might be wrong, so I'll keep them in mind.
  34. 1 like
    My mom used to use grocery shopping carts. They seem to be more posture friendly where you hold the bar in front of you instead of the handle bars on the side. I feel people have a tendency to stoop over with these. Even walking poles may be better for active situations. That's my 2 cents.
  35. 1 like
    Since I have started taking C/L I think I have had every manufacture that has made it. Currently Wegmans Pharmacy here in NY has put me back to TEVA C/L. Since I have been back on this brand I have noticed that it kicks in a little slower and I get a slightly more dystonia in my hands. I also get more twitches and restless leg syndrome before my ER kicks in at night. Thankfully my last scrip that was refilled, Wegmans has switched back to SunPharma brand C/L. I have found that for me this one kicks in relatively fast and I have less issue with leg twitches and dystonia. I don't remember having issues when I was on Mylan's version either. Been awhile since I have used Mylan.
  36. 1 like
    Day 2 I had a pretty good day 2 also. I wasn't nearly as active due to the NCAA basketball tournament being on TV. Still no nap was required and my jerky has pretty much stayed away. Looking forward to week 2!
  37. 1 like
    I was having a lot of OFF/ON times. The patch should at least keep the agnostic at a stable level. I expect to have an interesting time the next few months until we get this all adjusted. I know there will be side effects but I am hoping it is all worth it. I still take Sinemet every 4 hours. My next question for doc is why do I use the Sinemet CR at night every 4 hours. The CR flavor doesn't seem to last any longer than regular. Can't I just do the regular all day long?? I did get very sleepy at times. I'm really not sure what drug was causing it, but beginning to suspect Mirapex After my second visit with the excellent MDS at KU Med, I decided to fire my local Nuero. He was stuck in the '70s and prescribing stuff just because. I had no confidence in him. I am giving the new doc a long leash and am open to any treatment the experts at KU see fit for me.
  38. 1 like
    I ain't afraid of no cops.
  39. 1 like
    DAY 1 on the patch I am impressed! I felt great yesterday. I got off my ass and did some strenuous yard work in the morning. Without realizing that it was time for my after lunch nap, I decided to go shopping the many aisles of Walmart. Whaaaat ??? In the past, napping was the only option! Later in the day, I prepared a dinner of tacos with a side of CCQ. It was exhausting (and tasty) but I did it! Boy was I ready for bed when the time came. I only got 4 hrs of sleep but they were quality hours. I think this patch may be "just what the doctor ordered". ...and to think, the past few weeks I had been considering life without driving. I think I will put those thoughts away.
  40. 1 like
    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.
  41. 1 like
    The ketogenic diet has also shown some benefit for PD. I try to stay in ketosis, but it is really difficult to stay away from chocolate and ice cream for a long time.
  42. 1 like
    Thank you Melissa and LAD for your support and tips. I have to check out Bryan Grant Foundation. POSITIVITY is all we need. PinkDaisy
  43. 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..).
  44. 1 like
    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"
  45. 1 like
    I belong to this club...this stage...this challenge...this point re: PD as all of you describe above. Hard does not even begin to explain how difficult it is. I was so glad to hear that most if not all of you have someone to help you. This was posted in another health forum I belong to (for MPD) and is such a good reminder to remember as we walk the path we are on with PD, as well: 'God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference. Living one day at a time, enjoying one moment at a time, accepting hardship as the pathway to peace; taking, as He did, this sinful world as it is, not as I would have it; trusting that He will make all things right if I surrender to His will; that I may be reasonably happy in this life, and supremely happy with Him forever in the next.' (--Reinhold Niebuhr)
  46. 1 like
    New Normal, Christie attacked MrFritz because she did not approve of his sharing his experience and she has attacked you for sharing your feelings. She, quite obviously, feels entitled to sit in judgement of others and when those judgements are negative, she apparently feels the rest of the world is benefited by sharing her denigration of others. I'm sure if one were to read all the posts, we'd find she has disparaged others, too. So, consider the source and realize judging others as being inferior to herself is just her modus-operandi so no need to take anything she says to heart.
  47. 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
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    Looks interesting, John. Thanks for sharing. Are you personally participating in any of the therapies the book discusses? Best wishes, Sue W.
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    Hello all, I feel people must be tired of my posts, but since Jack and Cowboy address me by name, what can I do but respond? (Thanks, guys!). There's lots of talk about personal choice out there, but in the Shiavo case, Terri did not make the choice to starve to death. Her adulterous husband, who had a conflict of interest if ever there was one, made the choice for her. There was no evidence that Terri was in any painful discomfort. Contrary to endless reports, she was not "on life support"--no respirator or anything heroic. Simply, she was being fed formula, no more "artificial" than Slimfast, Boost, or Enfamil. Though Jack suggests we keep God out of the discussion, the truth is, we don't know Terri's what spiritual status was. Was she communing with God behind unseeing eyes? We just can't know. Certainly her parents were religious people, and they should not have been penalized for that. Many people share a religion that mandates they offer a sip of water to the thirsty, but police enforcers made sure Terri did not receive even an ice chip to soothe her mouth. It is a horrible test case in all respects. It is certainly impractical to expect that 28-year-olds would have advanced directives anticipating a situation like hers. That the court supported her husband's guardianship is an appallling travesty. Clearly, the case of Cowboy's brother-in-law was different, and his relatives responded appropriately with both common sense and compassion. I approve of Advance Directives and "getting one's house in order," as Cowboy suggests. I am against assisted suicide for the reasons Jack states--way too much space for abuse. I am rather more ambivalent about suicide itself than might be expected. Though I feel I cannot grab that timing away from God in my own situation, I acknowledge that others are not constrained by the same religious belief. I fear that sternly removing God (or should I say Judeo-Christian tradition) from the national healthcare discussion would have disastrous results. If we do not treat "the least of these" as though they share God's image, will we hang our ethics on pure utility? Will we be comfortable sacrificing the individual for "the greater good," or economic prudence? In Roger's post, Myra MacPherson claims "no institution dealing with the ill has a financial incentive to hasten death." Perhaps that is the "official" position, but having worked in healthcare as well as done reading on the subject, I'm skeptical. Enough for now. Sorry--more than 5 lines! Sue W.
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    Fancy, I agree with your entire post. Thanks for "walking over" from the Caregiver's forum. I don't believe it was "cheating" to invite you! Roger, I dispute your statement that Michael J. Fox is "science-based." He's simply an actor with his own set of "handlers," if I may use your term. Though I admire his courage in being so public with his disability, some of what he has said about stem cells, etc., is erroneous. I've read Mort Kondrake's biography of his wife Millie. I was touched by his devotion to her. I felt very sorry for Millie--she had an exceptionally severe case of Parkinson's Plus which didn't respond well to any treatment. What was saddest to me, was that she never came to terms with her illness, and lost her faith at the outset. Mort wrote throughout the book that his faith grew. As for your remarks about the Pope, it's true that many details of his life and death were out of public view, (I believe, understandably so). I did not have my dx until after his death, so I wasn't paying so much attention to the details of Parkinson's at the time. Still, he wrote voluminously. His writings reflect hope and not bitterness. He had intelligence, integrity, and courage. I don't care a bit if he becomes an official "saint" or not (though I would like to know more about the supposed divine healing of the nun). I've liked him since I read his poetry 20 years ago, so I'm not likely to stop liking him, because of what you say. Thanks for propelling me to take _Crossing the Threshold of Hope_ off my bookshelf! Sue W.