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  1. 10 points
    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. 8 points
    Welcome! Here are a couple of things that help me come to grips with Parkinson's. You may not find them comforting or helpful so please disregard if that is so. The day after I received my diagnosis I reminded myself that I don't have anything that I didn't have the day before and the day before that, I just didn't know what it was. If I could handle yesterday then it is most likely I can handle today and tomorrow. Don't cross that bridge before you come to it. It is so easy to dwell on all the possible and often frightening things about this disease. But, remember no one knows what tomorrow will bring. Yes, I might develop a new symptom but I might also get in a car accident, get killed and consequently never develop any other symptoms. There might also be new treatments. Life is a crap shoot. We just don't know what will happen. We might want to plan for some of the possible negative things, but there is no point in dwelling on something that may not even happen. Sometimes those around us are very concerned and mourn some of the losses they see in our health and wellbeing. It is also tempting to feel sorry for ourselves and start thinking that no one else has problems. No one gets through this life alive! We all must face mortality. Hubby, don't worry so much about me as I might not be the first one to go. Let's make the most of today - no premature mourning, there is enough time to mourn tomorrow. Start making a bucket list and fill it with both the bold and daring as well as the simple. Go on that once in a lifetime trip but there is also a lot of satisfaction in some of the more simple things, such as attending a grandson's ballgame or attending a granddaughter's graduation. It is good to reflect upon the number of things that have been checked off the list and contemplate new things to add. In other words don't forget to keep living. It is hard if not impossible to always feel positive - so don't try. It's ok to take a break and vent, scream, cuss, have a good old tantrum and cry. Just be sure not to hurt the innocent while indulging yourself. Remember you are dealing with the loss of dopamine which not only affects our movement but emotions as well. Feeling down is not a sign of weakness but a symptom of the disease itself. See your doctor often and don't be afraid to be your own advocate or ask a loved one to assist in this regard. Life goes on. All we can really do is make the best with what we've got.
  3. 6 points
  4. 6 points
    Life is good. Busy day. 2 mile walk (40 minutes), riding mower out of service so push mower back yard (20 hours); then off to Rock Steady Boxing (1.5 hour) My Pebble watch has 4 hours of activity for the day (new record). 98F with 90% Humidity (way too humid). Dogs are worn out and joined me for an afternoon nap.
  5. 6 points
    Morning I agree with Patriot anybody can write what they want and it is up to us if we want to read it. Pdmanaz you can write about anything your heart desires and if I want to read it I will. Bard
  6. 6 points
    Hello all, It's been a while since I've posted. This coming Monday, I start the inpatient segment of a Phase 1 double blind clinical trial, testing a new immunotherapy treatment for PD. Details of the trial are here: https://clinicaltrials.gov/ct2/show/NCT02459886 The trial is fairly invasive, including IV administration of the study drug (or placebo), five days of inpatient stay with 24 hour monitoring, multiple lumbar punctures (spinal taps), and MRIs. To qualify, I've had to drop all meds except Azilect (people on stable doses of Sinemet also qualify, I believe), and undergo a series of health screens, including DaTScan. Reasonably good health (apart from PD) and a positive DaTScan are required. Since most Phase 1 trials don't pan out, and I have a 1/3 chance of getting the placebo, I'm not expecting personal benefit. But the science is very cool--the hope is the compound (engineered antibodies) will clear misfolded alpha-synuclien proteins from the brain and dramatically slow PD progression. Immunotherapy treatments from other companies have already made it past Phase 1, and are starting Phase 2, so even if this particular trial doesn't produce good results, it seems the general approach has a lot of promise. My MDS is one of the study doctors, so I feel like I'm in good hands, and compensation for my time and travel is quite reasonable. Certainly there are risks involved, but I believe they are relatively small and manageable. I'll post more as the experience continues.
  7. 6 points
    Mplsgrl86, I can relate, our four children were 3,5,7, and 9 when this started and it was diagnosed almost three years later. my first reaction was grief for the first week. My DW was a Pollyanna and wouldn't let it get her down. The problem was she would only look at the good things and let everything else go so there was no line of communication between us. That has continued until lately and it still isn't completely open. Getting on the same page with your husband to me is the most important thing going forward. Get all of the crap stuff out of the way so you won't have to worry about things later. I have had to do all of the financial planning, and lately got her to do some estate planning. I would get your wills in order, medical power of attorney, durable power of attorney, living wills and things our of the way. That way you don't have to make decisions when you are possibly really stressed later and can think things through. Having a child makes one aware of, who will be the guardian, how will they be taken care of, etc. more apparent. I can't believe how many people that don't have medical problems do not have a will in place. One big piece of advice from a dear departed friend, was that if you have seen one person with Parkinson's you have seen one person with Parkinson's. I think the people that face a lot of problems tend to post here, people that don't have to deal with much don't since they don't feel the need. Don't let the posts on here worry you too much, you can't predict how long this journey will be, what symptoms will show up, how fast it will progress, etc. Make your plan for the future and adjust it as life comes. I think that can ease your mind a lot. Message me or others if you have questions you do not want the public to see, people are really helpful on here. Coach T
  8. 6 points
    this a few days ago and lost it three times. It just reappeared today. It's a beautiful day in my neighborhood, too. Mister Rogers was my daughter Lillian's favorite program when she was young. I love your description of the magic of gardens growing, jb. As part of a workshop that I attended 30 years ago, I was asked to fold a large piece of white paper into thirds and draw a picture of my past, present, and future on each of the panels. I drew my past showing a very hard-shelled seed with all the colors of the rainbow inside it under snow covered ground, surrounded by creepy insects. The present showed a small sapling with a few branches and leaves. I depicted my future as a full grown tree with flowers of many colors. It has all come true. From a frightened child in a hostile environment to a small but earnest sapling, to a mature tree in full and glorious bloom, I have and will continue to realize my full potential. This has come about not in spite of PD but because having PD has forced me to nurture myself or be miserable.
  9. 6 points
    We had our annual Golden Retriever Rescue group swim this weekend. Storms held off, but 110 Golden Retrievers and 117 people it was a great turn out. We took the harness off my Golden, who is my Service Dog, and told her to go play! She was swimming almost non-stop. Few hundred tennis balls, but she would get a sandy one and come up to the ball bucket and drop it in and get a new one!
  10. 6 points
    Everything in life involves trade offs. Meds for PD are no exception. Ive been taking carbidopa/levodopa since my Dx 19 months ago. Only side effect since then was daytime sleepiness. So I switched from the regular instant release (often called Sinemet) to an extended release version (Rytary). Same medication, just different rate of release. I feel like I did 5 years ago as a result. However I know that the trade off is a high probability of dyskenisia (bad movements) at some point in the future. However, the latest research shows that you probably aren't saving yourself much if anything by delaying those meds. It is the total dose of levodopa that causes that side effect more so than duration of taking it. There are other meds you can try too. Primarily the dopamine agonists like Requip and Mirapex. However those have their own risks, including impulse control disorders, and sleep attacks (suddenly falling asleep when that is inappropriate like while at work or driving). Some on here choose to not medicate at first. For them exercise is a key part of fighting the disease, as it really should be even if you are taking meds. It will boil down to whether the symptoms are more bothersome for you than the risks of the side effects. But the meds are not something to fear, just something to consider with deliberation.
  11. 6 points
    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.
  12. 6 points
    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.
  13. 6 points
    Yesterday I got a chance to meet Beau's Mom. I was heading to my wife's aunt and uncle's to stay the night so I was closer to Evergreen for a neuropsychological exam this morning. Got to visit with Dianne for about an hour. It was certainly nice to meet someone in real life from here. Edit to add: I'm on my phone, so I'll write more when I have a real keyboard to type with.
  14. 6 points
    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.")
  15. 6 points
    Hi, everyone. Am back from my unplanned and long hiatus. There was no ban (neither on me nor the thread), FYI. Just a series of mainly health issues I was dealing with, like life sometimes sends us all. I was without a laptop for most of that time, and it's good to now have a new one up and running.
  16. 6 points
    Check these exercises for hands
  17. 5 points
    First, forget the bucket list. You are not close to "kicking the bucket". Next, don't give up on the plans for your life. Has anything really changed since your diagnosis? You can live a long and fruitful life. Then, don't be in a hurry to tell others. You are not the only one with problems. In fact, almost everyone has problems and many have problems worse than yours. I have a young nephew with a brain tumor. One of my tenants felt sick and went to the doctor. She had metastatic cancer and died only a few weeks later. What are our PD problems compared to that? Furthermore, people don't want to hang around with people that are sick. Talk too much about your PD and your friends and family will slowly disappear. No-one wants PD, but MANY people have it far worse. Live your life as you planned and don't let PD get in your way!
  18. 5 points
    Why can't Linda post what she wants? If anyone doesn't like her posts, they can simply ignore them. Easy!
  19. 5 points
    Good morning...nothing better then a sunset at the beach! Have a good day everyone ! ps...jb... The "boy" I taught to tango was my fellow Parkinson wellness recovery classmate...I have two of them and they are 70+ years old but we call them the "boys" LAD
  20. 5 points
    Wow Luke you are very upset. I support Miracle because of the ongoing support she has given me through the years, I won't apologize for that. I don't think pitting people against each other in your dis take with Miracle is appropriate. I will support you as quickly when it's earned. We all need to understand that we're all at different stages, different head spaces and different approaches on this insidious decease. Chill out. We need all our energy to battle Parkinson's not each other. D
  21. 5 points
    1) Explain parkinsonism vs Parkinson's. What symptoms do I have (or don't have) that make it different? 2) Could it be MS, since lesions show on the MRI? 3) What is typical for progression? What symptoms come first, and what can I expect going forward? 4) What are the obvious symptoms, and what are the non-motor symptoms? (i.e. depression, apathy, confusion...) 5) There is evidence that some people may exaggerate symptoms subconsciously. Make a list of symptoms you can't fake, in case they decide to dismiss your initial diagnosis, and discuss them in detail. They call it "giveaway" on some motor and strength tests. I had a neurologist (non-MDS) say early on that I had giveaway. I had to look it up after I saw the post-appointment notes. You obviously don't want PD, but the mind is a crazy thing if you're convinced you have PD... In hindsight, I wish I could have asked him whether my confirmed sleep apnea and REM Behavior Disorder were fake. Or if I intentionally wet the bed with my incontinence. MDS's are smart and they should be trained to see the differences. No need to exaggerate, just be yourself... Good luck to you! ,
  22. 5 points
    Good Morning, I hope that everyone had a good weekend, a good nites sleep and has ideas for a good week . Yesterday, my Mom came out to the Farm from the retirement Manor for Mothers day. She is 88, needs to use her walker, but is ready to go anywheres. I have 3 brothers and 2 sisters with spouses and kids,and some grandkids that were coming for lunch. Some of my cousins that live nearby came as well. Everyone brought salads and butter tarts, cheese cake and the usual assortment of summertime food. I cooked some pork loin roasts for sandwiches the night before. I still had lots to do to get ready for the 25 plus people coming for lunch when I got up Sunday morning. Vacuuming, clean the bathrooms, get myself cleaned up, put the extra leaves in the dining table, slice the meat and all that stuff. I used to be able to fly through a list of those things. A 5 minute shower use to take me only 3 minutes. I could vacuum with one hand and dust the cabinets with the other. Unload the dishwasher, and fill pickles dishes at the same time. But not now. I realized that dragging that unwelcome, leeching companion named Parkinson that has been riding my back for the last 10 years is causing me trouble. He is getting heavier, my back gets sore, my arms sometimes feel like lead, My feet drag across the floor like I was wading through waist high molasses. I was up at 7:00 to finish preparing, People would be arriving at high noon. I said to myself, "Self, just relax. What gets done, gets done. It is just family, the food will get served, Everything will be fine" I was running the vacuuum with short pushes and pulls, one eye on the clock, and tottering around, wondering if I really took pills this morning when my Sister from next door came in. An angel to my rescue at about 10:30. She, I often call her St. Susie, soon had me on track to finish things needing to be done. Instead of skittering from job to job with no accomplishment. She took quick and efficient steps as she always could, and soon had the kitchen stuff organised, table set and we were ready when people started to arrive. I swear, she could organise violent rioters in the street into a Sunday School Picnic. I think everyone had a good day, Everyone got filled up with yummy food. There was still a dozen people stayed for supper of leftovers and a big feed of asparagus which quickly disappeared. I even had leftover cheescake for breakfast today. Yesterday reinforced two things that I already knew: One being that my parkinsons symptoms are more pronounced and stress makes them worse to the point of freezing up. The faster I go, the slower I am. And second, but first, I am lucky to have grown up and lived with my own family within a bigger family that has always been close and supportive of each other. I hope everyone has a good day today and can pull some contentment out of this trainride called Life: with its delays, detours, unmarked stations, speeding downhill runaways clinging onto tight bends, dark tunnels, high trestle bridges over vast gorges, and slowly chugging uphill tracks. But always with new views and outlooks, challenges and rewards: travelling this railroad, knowing where you have been, wondering whats around the next bend. jb
  23. 5 points
    The rocket thundered on takeoff from ``other places``, or was it Outer Spaces, picked up shuttles that clicked onto our Rocket from other galaxies, skimmed through Milky Ways, Black Holes and Time Warps. The online show was a new sitcom produced by a Miss Feisty Folder and proved very interesting. The flight was ``Out of this`World``. Pun intended. Very modern it was, But with very little ceremony they prepared me for exit and my return Home and I was ejected out of the Air Canada Rocket by an older than me gentleman, a former WW 2 Air Force Crewman, a bomb aimer I believe he may of been, who calculated wind drift, our Mach 7 ground speed my weight and the heftiness of my carry on luggage that I clutched,(hoping he wouldn`t discover my Trail Mix raisins and peanuts from some other stratosphere), and pushed me out the Arriving Somewhere Rocket Exit Tube as we passed over Kilkenny on the next orbit of the earth. I fell, the chutes opened, I drifted, I saw land, I saw ocean, flooded rivers and cars and cows and people and landed in my backyard. The horse knickered for a bale of hay and the dog needed out to pee. It was nice to get home.
  24. 5 points
    Had a PD -0 ...ME - 1 moment today hiked a trail to incredible lookout today!
  25. 5 points
    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
  26. 5 points
    Hope everyone had a good day...I follow another online PD site ... this is the pledge....works for me!
  27. 5 points
    Thnking about our new member, The Count, I will change my format this morning. 1. Good morning to every one. 2. It takes two Levadopa to get me awake in the morning. One for each eye 3. A third hand may be helpful some days. Ah, who needs three shaky hands. 4. Four--ward I trudge, hauling myself along this mysterious trail called Life 5. favourite 5 sandwiches-BLT, roast beef, egg salad, ham and cheese and Peanut Butter with Honey 6. the big 6 -0 is Looming within a year and I plan to...... 7. I baked cookies yesterday and today I will eat seven of them. I did get a jump on this topic, only 3 more to go . 8. I went to the local Chinese buffet last nite with a buddy. I 8 a lot. 9. At age 9, I went to a one room country school, grades 1-3 with no running water. 10. Despite some challenges, maybe about 10 of them, and in my tenth year of Parkinsons, It is a good life I have even if I have to take 10 Levadopa pills a day.
  28. 5 points
    Hi Gulfvet I agree that PD dx does not mean a drastic change in life. I have been dx'd for 4 years and DH (dear husband) has been dx'd one year. I recently drove our Harley trike with DH sitting behind for two hours. The next week, DH and I went kayaking ...in separate boats..for two hours We are now planning a 7,000 mile road trip with boats and trike in a trailer...AND fulfilling our bucket list. On our list is a hot air balloon ride, a wood carving seminar, a pontoon plane ride, deep sea fishing charter, 10 days on waterfront of Vancouver Island, BC, a kayak trip up Cowlitz river to dam...only a partial list. I will be 70 soon, DH will be 72. Of course, we are spending our children's inheritance...but intend to make memories for a lifetime. 😉 Each day we accept...adapt...and laugh..... try to serve others...and thank our creator for the many blessings we have. NN
  29. 5 points
    Patients who eventually get diagnosed with MSA typically have abnormal Datscans early in the disease course. Similarly to PD. Datscans CANNOT differentiate between PD and MSA cause they are abnormal in both occasions. A normal Datscan -or, even more so, a series of normal Datscans within several years from diagnosis- strongly argue not only against PD but also against MSA. Thus, the diagnosis MSA is not typically considered for patients with parkinsonism and normal Datscan (s). The differential diagnosis of patients with parkinsonism and normal Datscan may include dystonia, essential tremor and several types of secondary parkinsonism: vascular parkinsonism, hydrocephalus, drug-induced parkinsonism (such as antipsychotics), or toxin-induced parkinsonism (such as manganese poisoning -may be observed during occupational exposure, as in welders, after chronic use of ephedrine-based psychostimulants or even after chronic use of bath salts made from ephedrine!!).
  30. 5 points
    Glad you are doing better, Linda! Luke, I like your tone. When I first saw this thread on the forum, I had no idea it would turn into one of the most entertaining of all! In state-run organizations (such as the high schools in which I once taught) I was unyielding in observing a strict separation of religions and general education. But this forum is not state-run and its threads not mandatory reading for pwp. Although I do not label myself "Christian," those who find Christianity helpful in their self-treatment are welcome to their own thread as far as I am concerned. They are not proselytizing if I am not reading. Like Luke, I say . . . carry on!
  31. 5 points
    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!
  32. 5 points
    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.
  33. 5 points
    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
  34. 5 points
    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.
  35. 4 points
    Just a brief post cannot believe that is a half year that I decided I could no longer take care of my DH 24/7. It was the most difficult decision that I have ever made. But thanks to God that I did. He loves it, they have something going on every day. Today was Gardening and later everyone came in and had popcorn and lemonade. His PD has remained the same, except one new symptom which is slight drooling which are at times bad, other times not so bad. His speech has gotton much better now he has so many residents and nurses to chat with every day. His tremors come and go. He is in a wheelchair, but everyday they get him up and uses his walker and walks with the nurses. I could go on and on but I am feeling so much better myself, and I go every day for four hours and visit and take part in the afternoon events with him. Alot of the residents look forward to my coming, as so many have no one. So I feel I have found my mission making not only my DH but many of the residents a better day.
  36. 4 points
    Good morning to all! In my life, some things are working out the way I would like. Others may never be as they were before. I find that acceptance of what is out of my control is the least stressful response for me with my PD. I find peace and joy in what I can do for myself and others. I appear to be having an attitude of gratitude today. I love it when that happens. Wishing you all a wonderful day! Dianne
  37. 4 points
    I was diagnosed 4 years ago and can still use chopsticks without taking any PD meds, RG, or UDCA. PD usually progresses slowly. So, when people really want to believe that something works to slow PD, they can convince themselves. Just look at the forum, people have convinced themselves that stem cells, UDCA, TUDCA, various supplements and many other things have slowed or stopped their progression. Worse yet, some people play into the desperation by making money selling snake oil to the sick.
  38. 4 points
    Good morning Everyone, Hi Ell, The Count and PapaJack, Dianne, and my longtime friend from Ireland, , Emma. I Hope everyone is well. Linda, my dictionary says, well it didn't say, that would freak me out if I opened it and it spoke. I looked it up in my trusty dictionary and read that porridge is often oatmeal but can be any cereal grain boiled in water or milk until thickened. The word is a variant of the word pottage which maybe refers to stuff boiled in a pot. While we bore everyone with our porridge dialogue Linda I will add just this: if a person had only 3 dollars to spend on food, it would buy you a lot of good nutrition and fill your tummy many times if spent on plain rolled oats to boil into porridge. I have a totally energy efficient clothes dryer that can dry many loads of laundry each day. Unfortunately it has been broken down for awhile and I was running short of clean clothes. Yesterday I replaced the broken clothesline, ( not quite broken, but it was snapping strands with a heavy load a couple weeks ago) and did some laundry. Last night I finished folding and putting away 23 underwear, 18 pairs of socks and 19 teeshirts. And a bunch of denim jeans, golf shirts and towells etc.. Sorry, reading back I realized that I just gave you too much information. I could delete that above stuff but I am going to expand on it. My Mom and Dad raised 6 kids. I never had a lot of clothes, you had to take care of them. When you got home from school at night, first thing you did was put on those old pants with the patches, and the old flannel shirt with the arms cut off. My grandboys, still young but old enough seem to have no thoughts about making clothes that are good, could be kept as good. But now I talk like an old person. I'm offtrack again, Good thing that I am not driving a train. So, when I get new underwear, in theory I should throw away the old stuff. But sometimes I think to myself, it isn't that worn out, I would of been glad to find a pair that good in my dresser as a kid. So Mom and Dad, I have made it. I am a wealthy man. I own at least 30 pair of underwear. Up in the first paragraph I wrote "that would freak me out". It reminded me of this. My grandboy, aged about 6, was remarking on something bad that had happened to his friend and Tommy said "that would freak me out like eating cold muffins." Gotta get going. Warm muffins to everyone. jb
  39. 4 points
    Good discussion. Like Patrot said it can be good stress...i tremored at a symphony...can't imagine if I had been to a rock concert! I tell grand kids it is my happiness barometer...happier I am, tremor increases...they think it is funny. On a serious note, I have avoided adding meds when stress increases symptoms. Once environment changes, symptoms relax
  40. 4 points
    As a 45 year old mom of 3 boys and a YOPD....I understand your fears. It's incredibly overwhelming and there is a whole process of emotions but your family will be ok. It may not seem like it right at this moment, but eventually PD becomes part of your life. You can't control the fact that it has become part of your life, but you can control how you respond to it. It is not all sunshine and roses but it's not gloom and doom either. Exercise is key. A PD specific one is beneficial. There are lots of programs...educate yourselves and pick one that works. When I was DX, one doctor recommended dancing. My husband and I now take ballroom dance lessons. We even go to formals now...gown & tux. Never in a million years would I had guessed we would ever take dance lessons. As much as I feared things PD would take from us, I never thought it would bring us something but it did. And when we are busting a move in the living room, I forget I have PD. My kids are older than yours but I think they are more aware that anyone may be fighting a battle that you cannot see and they have definitely learned what it means to be married and love unconditionally. PD was not in the plan. Life will be different but it can still be great. PD does not define me, it's a part of who I am now. I have learned to be present - seize the day. Eat ice cream for breakfast with your toddler. I just listened to a webinar on the Michael J Fox foundation. It was about YOPD. It was very informative but not overwhelming. You can find it on their website under webinars. Good luck and welcome to the forum. LAD
  41. 4 points
    Some one explained exercise like this to me and it help me keep up the motivation. (I have almost the same issues you do during and after exercise). "Doing an exercise routine that gets the heart rate up for 1/2 hour or more is like making a deposit in your 401K. It is not immediately beneficial but will help you in the future." This helped me to understand that I may not see a benefit that day, but I will see it in the future. I can say that after 2 years of maintaining an active life with exercise, I am still on the same dose we first found worked for me and my last MDS visit I had the same scores I did when I first saw them. Good luck and hang in there. It does get better. Attitude is everything with this disease. Every day try and find something to celebrate (be happy abut). It can be as simple as waking up in the morning and putting you slippers on with out meds. This way of celebrating the little thing helps me stay in a positive mind set each day. Blessings Adam
  42. 4 points
    Good Morning Everyone, And special good morning to Ella. Pretty quiet on the board today isn't it. Maybe everyone had too many hotdogs on Memorial Day. Good Advice you gave me yesterday Ella. I decided what the heck as I got out of bed this morning and began "The Trudging" around the house for the regular eye opening, muscle stretching, bladder relieving, TV tuning, pill popping, cereal slurping, coffee making, bread toasting, followed by laptop reading and then the dog is on my lap for some sports report watching and then we maybe even do a little bit of eye shut napping. That is the usual routine. Back to your advice, I don't have to follow the old routine, I can make my own decisions. I have no boss, so today, I went crazy and instead of oatmeal porridge I went to my cookie jar and grabbed 2 chocolate chip, and 3 Oatmeal with chocolate chips, raisins and coconut cookies and they tasted good. I don't usually eat cookies before breakfast, but today I am a Rebel. Have a great day Ella, and Everyone else too. jb
  43. 4 points
    Be afraid, very afraid . . . la-fi-hiltzik-trump-disabled-20170522-story.html Hope NPF and others come out with strong positions on this one. SS Disability is a benefit we pay for through our payroll taxes and a lifesaver for many with Parkinson's disease and other debilitating conditions. "Disability insurance is an inextricable part of Social Security. It’s a core part of the program, just like retirement benefits. It was created as an add-on to Social Security in 1956, under President Eisenhower. It’s financed by the payroll tax, and the reserve funds that cover both aspects of the program are more entwined than ever, thanks to a reform measure passed by Congress in 2015."
  44. 4 points
    That always has seemed to be the problem: we live in a world where half the people think the only way to get what they want—they call this the common good-- is to use the force of Government to extort compliance from the other half who view their solutions and tactics as counterproductive and an attack on personal freedoms. It amazes me how your Democratic party can claim moral righteousness on so many issues and at the same time deny the humanity of half the American people. Yes, it’s shameful for a country not to take care of the truly needy but it’s immoral not to distinguish those who can’t take care of themselves from those who won’t. Adding insult, your “Party’s” continual belittling and demonization of anyone who opposes them. Your characterization of our leadership as being chaotic and lead by “whim” simply demonstrates your unwillingness or incapability to understand what they are doing. If your “party” truly wants things to change for the better, they need to entertain the idea that the old way of doing things is only going to result in more of the same old results and that introducing meaningful change, although uncomfortable is only part of the growing process. What world would you rather have your children inherit: one dominated by convoluted Government regulations designed to benefit big corporations, bureaucrats, and special interests or one of self-determination where citizens willfully look after the welfare of each other? I personally think that many Democrats are acting out of self-interest or have so little faith in the humanity of their fellow Americans that they prefer the iron fist over willful cooperation. Where does it end—you did say “healthcare is just one of our struggles”—if forced to comply with the whim of my neighbor at what point is he my Master? Vote no on intrusive Government control.
  45. 4 points
    Excellent question, great responses. I like it when people, especially ones I know, ask detailed questions, either about PD in general, or my PD specifically. I really don't mind answering questions as I'm happy to educate people. Sometimes, things are hard to explain, but it's still ok because I figure the challenge is good for maintaining my cognitive function. Not many people ask, though. Perhaps they think I don't want to talk about it. It amuses me when people comment about my relative youth. My best response is, "Disease knows no boundaries. I have a friend who was diagnosed with breast cancer at 33." What I wish others knew: Routine tasks are anything but. They require more effort than they could imagine, but they won't hear me complain because I don't want pity. Everybody has problems. Mine aren't necessarily worse than someone else's, just less common & less understood.
  46. 4 points
    Linda, I'm glad to have you as a friend. As to a few others, well Mom said it best "If you don't have anything polite to say, don't say anything at all". I miss Mom, very wise women. I finally rearranged my home office. Still working, grateful for the gifts I have, but at times realize there is a whole world out there and I need to step away from my computer. Oh, today is the anniversary of my parents 70th wedding. I still count my lucky stars to have had such wonder parents. Of the six of us kids, five are doing well. One is bitter about life in general and feels he had the worst childhood ever. My only thought is what we focus on brings out the best, or the worst, in all of us. Always amazed that some people can be in a lush garden, and yet just focus on the weeds. Meanwhile I'm up early, all three dogs camped out in the office with me. I've had my morning espresso and looking forward to a nice sunrise. Life is good.
  47. 4 points
    That statement would only make sense if someone asked for your opinion right? Looks like BIg Brother is watching very closely now.
  48. 4 points
    Good Morning Everyone, I hope that everyone had a good weekend. I am happy to say that I finished with the maple syrup boiling on Saturday. Now the cleanup!!! So Ella, I have become the MC, you made me chuckle. I just write stuff and try to engage people to come forward and say hi. A long time ago, I realised that a lot of the topics on the forum were complex and I felt that I never had enough knowledge to offer a comment on it. But me being me, I couldn`t just read and not say anything. That is how Good Morning`` got started. No topic really. Just a place to say hi! Or whatever you want. Like a never closed coffee shop where we can all sit down and chat and come and go. Make a comment, or just a nod, I know some of you just walk up and peek in the window, perhaps you are shy to come in and pull up a chair and that is fine too. Just know that everyone is welcome to join in with a comment if you wish. There is lots of room for everyone to join in. And Ella, If I get to be the MC, and a strand of this thread, and I can be so bold to say; it is only through the dedicated postings and readings of all of you that have taken all of these strands and created a good and strong strong thread that with passing time has become a strong rope. With a strength of history, a purpose of the present, and hopes of the future the rope grows stronger. Well, I didn`t sit down intending to spout off about all this. Maybe LAD it was triggered by your comment a couple days back when you said we all ``seem to know each other so well``. Good days to all, jb
  49. 4 points
    By the way, this new site is very confusing to use. Anybody else feel the same?
  50. 4 points
    The point of the exercise isn't to address the current symptoms (and in fact for most of us the exercise is be difficult and can exacerbate current symptoms). The stiffness I felt after a work 3 years ago is no where near how stiff and achy hurt I feel after I work out today. My tremor goes crazy while I work out, and the fatigue hits like a brick shortly after too. BUT, the physical act of exercising actually has the therapeutic benefit of resisting neurodegenerative diseases. When you work out hard, to the point of actually tiring yourself out, there can actually be measurable increases in dopamine in the stiatum. Regularly working out, even moderately, has been prove as one of the more effective ways to enhance the plasticity of the central nervous system. That means it it makes your brain better able to adapt and resist the effects of PD. This isn't sales pitch type stuff from an infomercial on late night TV, its scientifically documented fact. So, yes it sucks. It can hurt, and I'd agree that it can even cause symptoms to flare up. But, if that means my current symptoms flare and I slow down the progression of new ones, I'm all for it.
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