helplinedonate
  • 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

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • 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    

Leaderboard


Popular Content

Showing most liked content since 04/19/2017 in all areas

  1. 10 likes
    I finally have some good news to share. I met the Interventional Radiologist today who will be inserting a G-j tube on Friday, April 21. I will begin using Duopa the next day. Today is World Parkinson's Day 2017. I wore my special t-shirt to raise awareness. Dianne
  2. 6 likes
    I went shopping. In my mind I'm repeating eggs, whipping cream, baking powder. Just three things, I should have written them down, but just three things so I got it. Park the car at the far end of the parking lot, place was packed. Three things, that is all I have to remember. Truck backed out suddenly, startle reaction, fell over (remembered to tuck my head in). Got back into the store and came back with Ice Cream, coffee, and baking soda. My wife now writes out the shopping list.
  3. 6 likes
    Hello, Gulfvet -- Here is my contribution. It was when I was playing the piano that I first suspected I had a neurological problem. By the time I got my diagnosis, I could barely play at all because of my lack of manual coordination. Having studied classical piano for more than ten years, I was sad to lose that beautiful and rewarding pastime. With medication started and some improvement observable, I tried practicing again. It was pretty discouraging at first. But as the medications grew more and more effective in fighting symptoms, I practiced more often. Today I could never play on a concert stage, to be sure, but I can enjoy playing pieces of music that I never expected to play again! (A few examples are Chopin's "Fantaisie Impromptu in C# minor," two Rachmaninov preludes, Mendelssohn's "Rondo Capriccioso," and Chopin's "Berceuse.")
  4. 4 likes
    You would certainly THINK that each one of us fighting Parkinson's has enough on their own plate to concern themselves with, that they wouldn't feel the need to interfere with how someone else is coping with, and/or fighting PD in their own way. But alas, there's always that obnoxious 10% of ANY population....whether it's the diseased, sports stars, celebrities, police officers, politicians, etc., that feel a sick compulsion to tear down someone else's castle. History shows, however, that these type people usually self-destruct on their own. So, let them wallow in their own bitterness and nastiness....they CERTAINLY aren't helping themselves do any better with their own PD. (Personally, I hope it ramps up their symptoms). Linda, just start a new thread. If it also ends up shut down, start another.
  5. 4 likes
  6. 4 likes
    The Caregiver’s Reminders There’s sixty hours of chores, To complete in twenty-four. There is never enough time, To rid the bathtub of its grime. There’s tons and tons of weight to lift. Does this need washing? It passed the sniff. And If I have to make one more call, I’ll smash my head against the wall! I’m pretty sure sometime today a shower was to be taken, But my problem is I’m not sure whose, I think it’s mine- am I mistaken? There’s a clock on the wall that says it’s five past eleven, It can’t possibly be? The last time that I glanced at it, it wasn’t even seven! There are questions that I have to ask my higher power. I’ll demand answers at the church. Perhaps God’s hiding in the tower? Where are you God? I want to know when it is 4 am, If this is something meant to be I can not see the plan. “Where am I?” God smiles back “I’m in every act of love,” “In laundry, in a visit, or when you help them find a glove”. I have entrusted you my child with TWO of my beloved kids, To care for you, yourself and another one. Yes I did! To be my hands, and to hold theirs until their time is ended, And then to let them go knowing where they are headed is simply splendid. I’ve given you an honor that’s so hard to recognize, But if you take a moment to look in your loved ones eyes… You’ll see the bitty baby that came to save us all, For when you serve the least of these, you serve me as well. Sooner than you think, this season will be in the past, And you’ll be separated from them, until I call you home at last. Still, child I know you’re weary, you’re stressed, I know it’s true, And at times it feels like I have completely forgotten you. So when you speak to me, you’re welcome to yell, to scream, toSHOUT! Just be sure to take a moment remembering what this lifetimes all about… …the love that I showed you when I hung upon a tree… …Kid you learned that lesson well, as I can surely see. March, 6th 2017
  7. 4 likes
    That statement would only make sense if someone asked for your opinion right? Looks like BIg Brother is watching very closely now.
  8. 3 likes
    I wouldn't call it consise or informative but this is what I posted on my blog April 1st: Happy Parkinson’s Disease Awareness Month April is national Parkinson’s disease awareness month, and since I have Parkinsonism I was planning on doing a big post. A post talking about things like the early warning signs (like changes in handwriting), as well as some of its lesser known symptoms (such as trouble swallowing, losing your sense of smell, and constipation; Parkinsonism is the gift that keeps on giving), then end the post with the fact that yes you can develop Parkinsonism at 32 (your drs are just going to diagnosis you with migraines, myasthenia gravis, an aneurysm, strokes, and seizures before they get around to giving you a pill that makes you vomit twice a day; but hey, at least it takes away your tremors). So I was planning on doing a fairly long post, but then my body went and decided to develop a large ovarian cyst (what can I say, my body does weird stuff; but at least I get great parking). In place of the post I had planned, I will leave you with what I would call my Parkinson’s disease charity, were I to start one: Cure Rotten Awful Parkinsonism Michael J Fox totally wishes he’d thought of that acronym first!
  9. 3 likes
    Oh boy. I have nothing but sympathy and warmth to send. I have cared for 2 parents at this stage of life, and it was wrenching. I have watched and helped my friend with PSP go through this. Hang on. Take walks. Ask people to come in and sit for 20 minutes so you can run and get a cup of coffee somewhere OUT of the house. Talk to the hospice people. If he is in pain, can they up his pain medication to make him more comfortable? There are risks to that (depressed breathing, addiction) but it may be worth exploring. Meditation for you may help. Classical music playing softly in the background can also keep your spirit calmer as you go through this. Reaching out to friends, I hope you know you can pm me at any time, and I will respond with warmth, sympathy and respect. Deep breaths, this must be the hardest loss of all. Certainly my experience is a very pallid reflection of what you are going through. We're all here to help in whatever way we can.
  10. 3 likes
    Thanks. The one thing that went well was the programming. I got programmed the day before I went to the hospital and it worked great! So, at least I got a taste of how well it can work for me before I decide to risk it again
  11. 3 likes
    I am a talker and I definitely inherited that from my mother. I'll talk to anyone about anything . If I see someone looking at me funny because of something I've done or how slowly I'm moving i'll just say "I have Parkinson's". I've never gotten a negative response sometimes people ask me questions sometimes they don't. If they ask questions I'll always give them a truthful answer. One day One of my husbands coworkers caught her spouse asking me questions about PD. She chided him and told don't ask her questions about her medical condition again . And here I was thinking it was great that now he knew more about my condition because we frequently travel with them so it's been very helpful that he understands more about what I'm going through. Truthfully I think my coworkers spouse knows more about my PD than my own spouse. So really I just want people to ask anything that They don't know or understand. Delta
  12. 2 likes
    Thanks Genden. Only a CG realize what we do. My sister and I had a huge fight last night. She insisted that I send mom to the NH so we can all have our lives back. She lives with a guilty conscience knowing I do everything and she does zip and enjoy her fabulous life. I wanted to slap her so bad last night and give her a serious tongue lashing. She wouldn't have this great life if it wasn't for mom giving birth to her and sacrificing so much for her. I'm so glad that mom has dementia and was not aware of what we were talking about because she would have died of a broken heart right there and then. It is one thing to have a parent voluntarily say they want to be placed in a home but when it's the child who decides to do it to be free of responsibility then we live in a pretty pathetic society in my opinion. My sister complained that she cancelled 3 trips abroad last year due to having to come and help me with mom when she had one infection after another. What kind of daughter would see this as a burden? I have a co-worker who took off for Israel in an hour's time to be with her sick mom after hearing she was not well. She took 2 weeks unpaid leave from work to do it. People like us do exist. My sister thinks what I do is not normal and that no one does as much as I do for my mom. She's wrong! She only knows people who are worse than her. She calls herself a Christian woman yet act like the devil.
  13. 2 likes
    Good Morning everyone! I hope you all have (or are having) a great day....I haven't been on here in a little while, just trying to keep myself busy (I don't really need to try) between work, coaching little league, working on my "honey do" list it keeps me going....The hardest part of everything is not "crashing" when I get too tired and if I stop and rest I don't want to get back up, lol. Well Happy Moanday....I mean Monday
  14. 2 likes
    Stephen Messenger (@smessenger) Science / Natural Sciences September 15, 2011 Photo: enlewof / cc Across parts of Australia, reports have been pouring in of strange voices chattering high in the treetops -- mysterious, non-sensical conversations in English. But while this phenomenon is certainly quite odd, its explanation isn't paranormal. It turns out that escaped pet birds, namely parrots and cockatoos, have begun teaching their wild bird counterparts a bit of the language they picked up from their time in captivity -- and, according to witnesses, that includes more than a few expletives.Jaynia Sladek, an ornithologist from the Australian Museum, says that some birds are just natural mimickers, able to acquire new sounds based on things they hear around them. For birds kept as pets, these sounds tend to mirror human language -- but that influence doesn't cease even after said birds escape or are released back into the wild. Once back in their natural environments, these chatty ex-pets eventually join with wild birds who, in turn, start picking up the new words and sounds. The remnants of that language also eventually gets passed along to the escaped birds' offspring, much like it does for humans. "There's no reason why, if one comes into the flock with words, [then] another member of the flock wouldn't pick it up as well," Sladek said in an interview with Australian Geographic. According to the report, 'Hello cockie' is one of the most commonly heard phrases feral birds are teaching in the wild, along with a host of expletives -- perhaps the last words those escapees heard after their frantic owners realized they were making a break for freedom.
  15. 2 likes
    Fainting at the sight of blood is one problem I don't have, given my childhood that's for the best: My dad was very accident prone, but even more ER adverse. When he'd get a laceration mom would grab the sutures and I'd grab the scrubbing bubbles. One time an arosol can exploded, leaving shrapnel in dad's arm, forcing an ER visit. My parents returned home to find 16 year old me had done a chore without being asked. I replied to mom's graditude with a sigh and the words "I clean up the blood. It's what I do, I clean up the blood". This statement led to the family joke that I should have been a political spin doctor Speaking of spin, the friend I'm staying with and I have a new game, she names a movie, I come up with a smart aleck summary. Here's a few favorites- Pirates of the Caribbean - pirates spend ten years searching for Captain's lucky penny. Gilligan's island - a sad tale of missed opportunity - had the professor spent all that time with access to actual technology, we'd have warp drive by now Road runner - Coyote, who failed phsyics, trapped in the animal kingdom's hunger games Pocahontas - sheltered man from a wealthy family falls in love with a hippie Dianne - hope where ever you are right now your gut is being infused with yummy duopa. - Feisty
  16. 2 likes
    I started to get some dandruff flakes so I started using a dandruff shampoo. The flaking actually got worse and the shampoo darkened the hair around my scalp and made it feel coated and look bad. So, I put a couple drops of tea tree oil in my regular shampoo, put it on the crown of my head and left it there for about 10-15 minutes then washed my hair. The dandruff is gone (it's been a month and still no flakes) and it also completely took off the build up on my hair from the dandruff shampoo.
  17. 2 likes
    Hello Everyone! LAD-I don't even have to be in a medical setting to faint. I can be anywhere, doing anything and if the conversation turns medical I go DOWN! It's funny that certain body organs and parts bother me more then others. Don't talk to me about lungs or bones poking thru skin. Those will have me horizontal right now. LOL Diane I am super duper happy for you and can't wait to hear some news. I hope everyone had a blessed Easter. Mine started with a flat tire, then came home to find the goat destroyed the inside of the hen house and ended with dropping my PB cup on the floor (ate it anyway). But really, I enjoyed the day. Take care everyone and oh ya, Welcome to the family Count.
  18. 2 likes
    Thsnks JB! I often though of starting a blog of my journey. For now, the forum works! Today marks the beginning of a new chapter in my PD journey. My friend and trainer is getting certified in Parkinson wellness recovery. I get to go and participate in the workshop training by being a patient. I may not come out alive. Officially certified, we will launch our new program! Fingers crossed we can help others in there fight against PD! LAD
  19. 2 likes
    Good Morning Everyone. It made me very happy to see all the posts that have been put up here in the last week. Just friendly, informative, positive conversation that is open to everyone. I want to empathise that again. It is open to everyone that wants to post just to say hi. You don't have to write an essay. Marcia, I love that green circle spy glass. You should start an Avatar Consultant Agency. And if I understand correctly, if the list of things to be done is lost, one can assume that the list is completed. I could try that. That Elf thing did not work out. I went to bed last nite and left a mop and a bucket of hot water for the floor, left the can of paint and paint brushes and rollers in the room that needs painting. And a plateful of cookies. I awoke this morning to a bucket of cold water, untouched paint equipment, an empty cookie plate and a fat little housedog who didn't want his breakfast. Why did the Elves make shoes for the shoemaker? Ella, nothing is easier than growing daffodils. and they just keep coming back. Emma, you would be surprised if you looked out your window and saw me planting geraniums in the garden. Having floated a couple thousand miles in a rowboat on the North Atlantic Gulf Stream all the way to Ireland. Wouldn't you be ? Linda, good to see your presence. Hello Olotorin.Whazzup for you today? Ah LAD, a fainter. I can relate to that. I tend to have low blood pressure too. The ER story with your mom in the next room is funny.! Dianne, I hope that your repaired duopump is bringing relief to your body this morning. Fingers crossed for you. Oh, Marcia. Don't leave screwdrivers and other tools lying around where the cats can get them. They are devious creatures not to be trusted. Have a good Saturday Everyone, jb ps.. Marcia, I just about lost all of this post and then I remembered what you said about that red box; Thanx Whiz Kid!
  20. 2 likes
    OK, jb, I'm peeking in. I think you are doing a fine job. But who says everything needs getting done. I just make a list and then forget where I put it and so that means I must have gotten everything done. But who says what is important anyway. You do. So do what needs done and leave the rest alone. I'm not really good at posting pictures. I may have to give up posting new avatars. My DH had to help me with this one. I was holding a light wand that turned things green. And LAD love the sweat shirt. And everyone...Hello!! I thought I'd lost this post but clicked on Reply to this Topic (red box at top) and it reappeared. Wow. Magic. m
  21. 2 likes
    I've got no suggestions for managing anxiety it self besides all the things you've probably heard a million times before: take a deep breath, listen to music, blah, blah, blah, blah - I've never found a really great coping strategy, unless you count writing REALLY long posts, which isn't much help in the moment. Stress induced tremors are really annoying, PD gives you a poker face, but then it goes and ruins the act with your hands. I have found a solution or two though - - my neurologist has approved my making medication adjustments on the fly. If it's going to be a stressful day I take a little extra Sinemet. If something stressful occurs and tremors start I'll take a Sinemet, chew it too bits then chug water to get it working as fast as possible. I don't know what your medication regimen is and you need to speak with your Dr first, but that stratagey got me through mom's bladder infection in February - if your main concern is concealing your tremor, I find the bathroom a good place to hide until the Sinemet kicks in. Going for a walk gets me alone and often helps calm things. Ducking behind counters or going for "a nap" I have also used. Admittedly the only person I'm trying to hide them from is my demented mother. - on the other hand if you're needing the tremor to calm and don't care about being conspicuous then you can use what I call "the neuro exam trick". Move the opposite hand from the one you need to stop tremoring, like at the neurology check-ups. I used this so they could draw blood recently. Worrying the people you love is a double edged sword, on one hand you're grateful they care, on the other you love them back and so want them protected. At least that's how it is for me. I hope something here helps, and things return to whatever passes for normal soon. Hang in there - Feisty
  22. 2 likes
    I agree with Dianne! The first step should be an evaluation by an ENT specialist. He may perform -if needed- a flexible laryngoscopy- to watch you swallow solids and liquids and evaluate your condition (flexible laryngoscopy is a very simple and well tolerated procedure, nothing to worry about). The next step is a speech and swallowing therapist (not necessarily a MD) with expertise in functional/neurological dysphagia !! Based on the evaluation of the ENT, and under the guidance of your neurologist, the therapist will inform you on all your options, give you valuable tips that will help you swallow safely and start you on specific exercises for muscles involved in swallowing. Expiratory muscle strength training is an example of physiotherapy which has shown excellent results in improving swallowing difficulties. Other much simpler exercises, such as chewing gum, may also help!!! My dad -who also has Parkinson's- has significant swallowing difficulties. We have just finished the first step -the ENT evaluation- and are now looking for a therapist so that he starts therapy as soon as possible. Swallowing is a very important function and you should follow "aggressive" treatment to preserve it. Good luck and keep us posted!
  23. 2 likes
    Genden, I hope you are able to take a nap. Next time you contact a hospice nurse, ask for advice. Ask for help with this temperature, or an explanation of its possible origin. It may not be the catheter. Sometimes, if someone is very ill and weak, their temperature control can go off. Was he in pain at that time? Or just fidgety? His comfort (and your ability to rest!) is paramount. A respectful hospice nurse should be able to help with those questions if you ask them. Don't feel pushy if you ask for one nurse over another if you are more comfortable. Also don't feel embarrassed about talking to them that you felt left alone and let down by their lack of response. Ask them what is a reasonable call back time when you need help. Keep on keeping on, and deep breaths. We are holding you in our thoughts.
  24. 1 like
    I guess I am fortunate to be doing well on my meds and my MDS started me on small doses of everything. But I am a firm believer in the exercise part of things. I probably had PD for 2 years before my DX but exercise held it at bay. Exercise is medicine for PD. LAD
  25. 1 like
    LAD, I agree with Papa that you have inspirational messages and quotes. I hope you're well, too! How nice of you to think of me since I'm not a member (no dx).
  26. 1 like
    Thanks Pathfinder! Exenatide is being studied for disease modification of PD. An open label study a few years back looked very promising and there is a trial under way now. Given it's already approved for diabetes, I figure there must already be some folks with first hand experience with Exenatide and PD. I'm hoping to find their feedback.
  27. 1 like
    Peace, my trick is going out to dinner and almost passing out, squad called, ER, the whole nine yards! So embarrassing! Both times is was an unknown UTI and once low hemoglobin. You can't make this stuff up. My friends don't want to go to dinner with me anymore! Joke! 😜🤢
  28. 1 like
    Are you taking the 4 am dose with a sufficient amount of water to encourage your stomach to empty into the small intestine where the sinemet works? Or maybe lying down keeps the stomach from emptying into the intestine. Is it possible you could recline against some pillows in a semi seated position for awhile?
  29. 1 like
    Hi Lad keep taking care of your parents,great way of forgetting our fate.Or as what Dr.Low famous elixir for the nerves,Do the things we fear and hate to do.As we strengthen our nervous constitution .benefits are mental comfort and inner peace.PD is what it is but when i visit others much worse off I can laugh at my fate alot easier.. My best to you john
  30. 1 like
    Good, I'm so glad you got through it.
  31. 1 like
    So, had to go back to the ER with my mom in the early AM. I had taken my Miripex 2 hours prior. I got to the ER and saw my mom and ran out of the room. I am known for fainting with medical stuff and I knew I was going down. My BP tanked really fast. I guess my BP must go low when I sleep. Who knew? They threw me on a guerney and put me in the room next to my mom. It was quite comical actually. Mom was sending my dad over to check on me and I was sending my husband to check on her. They tilted the bed and I was fine. I go back in to see my mom and the same thing happens. I literally made my husband run out of the ER with me because I knew I had to get out or they were going to not let me go. I was fine in the fresh air. Moral of the story...I am not your girl for ER situations. Anyway, I never fainted and through it all....not one tremor. My mom was sent home and I escaped:) Happy Friday! LAD
  32. 1 like
    Nice picture,keeps us going strong.Good luck Beau's mom.
  33. 1 like
    Thank you all for this thread. There are so many negative ones out there. I get that PD is difficult and quite frankly it sucks but it's the hand we've been dealt. You choose to play it or fold. Folding is not an option for me. Thank you all for being "players", encouraging each other and allowing me to be part of it. LAD
  34. 1 like
    Marcia, you are very observant, I didn't realize Lad's pic was a "shirt." Now, I see the sleeves! by the way, I kind of like the green glow on your pic, kind of like an alien! A very attractive "alien," I may add! Love that shirt btw LAD! So cute! Good luck to you Diane, you are a trooper! I think you will do just fine. Jb, Daffodils are my favorite Spring flower, I was just thinking of planting some for next year, after admiring my neighbors lush garden full. Problem is, I have been "thinking" about planting them for the last 5 years! Jb, please send some of those "elves" to my house, I really could use them! Spring is a beautiful time of year, but for some reason everything that needs to be done seems to be staring you right in the face all at once! Sometimes, I need a nap just from "thinking" about all that has to be done!
  35. 1 like
    Hi, jb and all. As always, it is nice to drop in and visit here. Always pleasant and peaceful. Great going, jb.
  36. 1 like
    AMEN wife of PWPD I agree
  37. 1 like
    Helping parents while you yourself are sick is a tough one: I've been there, done that, couldn't afford the T-shirt since my debit card number had been stolen. It stinks, it's a terrible, stressful situation that I am so sorry is happening to you. That said, if you are comfortable sharing, what are your specific concerns? I know that there are several people on this form who are either having or have had similar situations. At the very least you'll be heard and understood, and you may even find some good advice. I know the encouragment I received here a year ago was invaluable. And even though I have more responsibility for my mom now than I did then, I feel alot more confident in my abilities now. So what is it specifically that's got you worried? If you were just here to vent and not for advice than disregard the previous paragraph 😊. I wish you and your parents the best, and hope things settle down for you soon. Hang in there - Feisty
  38. 1 like
    I joked about this before, but some people are trying to make it real. A medical scanner inspired by Star Trek! http://www.eetimes.com/document.asp?doc_id=1331604 I don't see it finding PD anytime soon
  39. 1 like
    i'll let you know, right nowas I sit here i've not been off since stage 2 on 4--10. i go to bed witthout symptoms and get up a few times in the nightstill able to walk and on. I get up in the morning about 9 stilll on . My wife reminds me to take meds. i was told to take my meds like normal andwe'd work on reducin when im turned on.
  40. 1 like
    I just listened to a free Parkinson's Foundation ExpertBriefing titled Is It Related to PD? Runny Noses, Skin Changes and Overlooked PD Symptoms. It will be available for viewing on April 25 at www.pdf.org. It was very informative about all aspects of PD. Dianne
  41. 1 like
    Good for you, Jul! I discovered somewhere in my thirties that I had lost the ability to ride a bike, and that was long before PD. I wouldn't dare try it now! But travel, I find, is a big confidence booster. Knowing that I can manage the planning and carrying out of all the details of travel is encouraging. This is especially true when I travel alone, as I did a few months ago in order to finish a manuscript for publication. Best of luck -- and keep riding that bicycle!
  42. 1 like
    Funny, I had 2-3 NCTs done during my complications. There was mention of odd results, but not one mentioned PD. I am glad your doctor was helpful for you. I just wish mine were.
  43. 1 like
    Have you considered a glass of wine or a hit or two of cannabis?
  44. 1 like
    Hello TheCount, Welcome! You've found the right place...a lot of knowledge and support on these forums. I am 48...was diagnosed 15 years ago at age 33. I have two young children also (12 and 9, maybe not so young!). I didn't have either of them when I was diagnosed, though. Take heart...young onset is generally a fairly slow progression. We all progress differently, but you have many, many good years ahead of you. There are many great medications and treatment options. This is a very manageable disease and there is significant research being done. Best advice...educate yourself, find good support (like this forum), exercise, get a good MDS, and relax. I still work full-time and am fully independent. There are frustrating days and times, for sure; however, there are many good days. Know that you are not alone...we are here...lean on us as you need! Peace and blessings, Mihai (Michael)
  45. 1 like
    I am not so sure Linda "departed" she may just be taking a break, we all need that every once in awhile. I admire her for starting a thread to discuss an off topic subject that she wants to share, she welcomes like minded people, noone is forced to read it. Linda is a very smart woman with a lot of sophistication, with a very kind and accepting heart. She holds tight to her beliefs but does not cram anything down other's throats, she respects all of us and she deserves our respect.
  46. 1 like
    There aren't to many people that truly want to hear how you are doing that day. Most are being kind and want to hear that you are fine. The details make them squirm! But when someone looks you in the eye and really asks how you are, well that feels as good as a hug. People who say they have the same problems or its just aging really don't get it. And the worst thing they can say is "well, you look good" - that makes me crazy!!! Retired social worker) Twitch
  47. 1 like
    How's your spoon count today? https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ Dianne
  48. 1 like
    URSODIOL – MY YEAR THREE UPDATE * * * * * * * * * * * * * * * * * * * * * Sorry for not updating this thread. My wife has been ill for the past year so I have been busy and my thoughts run elsewhere. For any newbies who may be reading this for the first time, I started this thread on December 4, 2013 to tell other people with Parkinson’s (PD) about my life-altering results with Ursodiol (UDCA & TUDCA). If you have a plethora of time, you can read this thread from its inception. But let me save you the trouble by providing you with a quick synopsis. UDCA (Ursodeoxycholic Acid) and TUDCA (Tauroursodeoxycholic acid) are synthesized naturally occurring bile acids. Bile acid has been used in Chinese medicine to treat neurological and other disorders for thousands of years. UDCA (Ursodiol & Urso) is considered a prescription drug in English speaking countries (US, UK, AU & CA). In most other countries, it is a non-prescription over-the-counter drug. TUDCA is a non-prescription over-the-counter health food supplement. Both are FDA approved and long term (20 year) studies of UDCA show that it is safe to use at our recommended dosage. People who have taken both UDCA and TUDCA report no difference in results. A note of caution regarding TUDCA: There have been some reports regarding the efficacy of some brands of TUDCA. As a non-prescription supplement, there are no standards or controls. Caveat emptor. I had a number of neurological issues which, by the summer 2012, had become severe enough where they started to interfere with my daily life. My Internist thought I had Essential Tremor so I sought a second opinion with the hope that there was a treatment. I knew nothing about Essential Tremor or Parkinson’s. My primary issues were tremors, balance, gait and vision which, in addition to other daily tasks, interfered with my ability to write, use my computer’s mouse, drive safely and walk without tripping due to dragging my toes. I had other issues, including REM Sleep Behavior Disorder (RBD) and Restless Leg Syndrome (RLS) which, at that moment, I did not know was related to PD. I went to a Neurologist who diagnosed me with PD and prescribed 1mg of Azelect daily which did not help at all. On my next visit, my symptoms had advanced so he added 4 tablets of 25/100 Sinemet. This too did not reduce or relieve my symptoms. In September of 2012, I came across an article in Brain entitled “Ursocholanic acid rescues mitochondrial function in common forms of familial Parkinson’s disease” ( see: http://brain.oxfordjournals.org/content/brain/early/2013/09/02/brain.awt224.full.pdf ). This study spoke about a number of substances which may be beneficial in the treatment of Parkinson’s. On my next visit to my Neurologist, I gave him a copy of the article which he had not read. He increased my Sinemet dosage from 4 to 6 tablets per day. I asked him if he would prescribe Ursodiol (UDCA). He said he wanted to read the article first. By the time I returned home, his office called to tell me he would prescribe Ursodiol. Subsequently, when I asked him why he approved this, he reply was that its use wouldn’t cause me any harm. It took a while for me to find a reasonably priced pharmacy. During that time, the additional Sinemet still did not help to reduce my tremors. On the morning of October 16, 2013 I took my first dose of Ursodiol. 36 hours later, I was almost 100% tremor free. In addition, my gait and toe dragging also normalized. During the course of time, my RBD resolved. Although I still occasionally have vivid dreams wherein I may act out, they are now rare events and no longer seem to be violent. I still have RLS. Within this thread are posts from other people who have also had similar positive experiences with UDCA or TUDCA. I have also received many private e-mails affirming similar results but only one for which UDCA did not help. I do not make any effort to maintain contact with most of these people so I cannot tell you how they are doing or if they are still on this regimen. If they are reading this, I encourage them to post their results and/or current status. There is a new website that appears to have a very substantial following. This site sells TUDCA combined with other supplements to treat Parkinson’s. So the word is still spreading without my help. Now, let me tell you how I’m doing and what you can expect if you try UDCA or TUDCA. UDCA & TUDCA appear to work equally well. A very small number of patients will not respond to this treatment. Treatment appears to be most effective for tremors and less effective in treating rigidity. The earlier one starts, the greater the results. Advanced patients may not see any benefit. My recommended dose is 300mg after each meal and at bedtime (4 doses per day). During the first 2½ years, there has been no change in my condition. I have seen a slight increase in my body tremor and right hand “action” tremor. But these are not constant and they are still significantly far less than they were 3 years ago. My other symptoms, thankfully, still remain resolved. I have not experienced any negative reactions related to this regimen. I just had a complete blood workup which showed that my cholesterol, kidney and liver functions are still normal. Both my Internist and Neurologist are pleased with my results and want me to continue. UDCA is considered an “Off-Label” drug for the treatment of Parkinson’s. As such, many doctors will not prescribe it. However, it is legal for them to do so. Neither UDCA nor TUDCA is cheap. But, if it provides symptom relief and/or slows progression, it is worth the cost. Neither UDCA nor TUDCA is a replacement for your currently prescribed medications. Do not stop or reduce your currently prescribed medications. NOTE TO VETERANS: My VA Internest tells me that if a VA Neurologist prescribes Ursodiol for treating a PD patient, then URSODIOL IS NOT AN “OFF-LABEL” DRUG AT THE VA PHARMACY where a 90 day supply of Ursodiol is only $24. I’m just passing this on but I can’t confirm this. To those of you who have been helped by this thread, rather than e-mailing me, please post your experience here for others to see. There is no better feeling then to know that you have helped another person. Please help to spread the love. As always, you can post your questions and comments here or e-mail me at mrfritz@comcast.net Fred
  49. 1 like
    Hi everyone! As an Ambassador of the Michael J Fox Foundation, I recently spoke at a Partners in Parkinsons event which you can see a short clip here - https://youtu.be/AI-tUZs-qjU Here I share my thoughts on how to stay positive and make life easier with Parkinsons Disease. SMILE! S - Simplify your life and have Support M - Manage and Maintain I - Interact with other PD patients L - Live and LOVE life E - Exercise Follow our group on Facebook to discuss experiences and tips on how to deal with Parkinson's - https://www.facebook.com/groups/1608850446035163/ or follow me at - https://www.facebook.com/pages/John-Pascal-van-Houden/788621737917039?ref=hl I will be posting tips I have learned the past 16 years of ways to best deal with Parkinsons. Hope to chat with many of you! John-Pascal
  50. 1 like
    I turn to this forum as an informative opportunity for all and SUPPORT. Of late there seems to be some negative comments to one another. While they may be wise opinions, let's please keep an open mind and keep the negative comments aside. If one doesn't believe, that's fine. To each her/his own. Who knows, a miracle could happen and if it benefits one or all, that's great!