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  1. 6 points
    Chronic By Superdecooper © 2010In the comfort of my dreams, I feel no pain.No heartache. No hurt coursing through this unpredictable frame of mine.I’m clear like a stream, questing for the blue ocean’s warmthBut Time, my subtle enemy, rushes me unwillingly towards the moment I awake.I struggle to smother all the small prickles of fear that the coming transition will bring.The warm comfort of my dreamscape fades.I wake into a world of tattered thoughts, unkind nerve endings and the edge of memory.Still, I hope it might be a good day.Maybe no rain in the forecast, bringing chronic pain.No mysterious body movements that spark instant regret.I fill my lungs with the sweet life of morning and hope.But then, like a death-row denizen, I exhale. Slowly I breathe out hate for the pinch of thorns shackling my release. Hot, dull, deep, unrelenting, and unforgiving pain greets me. In between each breath, I debate the sacrificial bargain awaiting my acceptance.Do I swallow each small capsule at every appointed hour?With just the right combination of rainbow tablets, I will be granted the power to bring this disaster under control.I summon the strength of will to exchange my cool intellect for a dulled, foggy existence haunted by the grey specter of pain.For just one more day, I agree to do less, think and be less.In exchange, the thorns will be blunted just enough for me to remember.When true night falls, I will dream again.
  2. 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.
  3. 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
  4. 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!
  5. 5 points
    Why can't Linda post what she wants? If anyone doesn't like her posts, they can simply ignore them. Easy!
  6. 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.
  7. 4 points
    This is a great PD site! Dr Laurie Mischley's video on nutrition is awesome! Her health care practice is the model of how health care should be.... https://scienceofparkinsons.com/2017/09/18/food/
  8. 4 points
    My dad has Parkinson's. I spent several years with an extreme paranoia that I was getting Parkinson's at a very young age. . I was anxious. I had resting tremors. My right arm was not swinging properly. I had elbow pain. Rigid muscles Knee pain. Depression. Constipation. Insomnia All the classic Parkinson's symptoms that you can think of. I would google all day about Parkinson's and even went to doctors. I would discover a new symptom daily. Finally I had enough and told myself if I am going to get Parkinson's, let it be. (This is key to solving the problem by accepting the problem gracefully) There is nothing I can do about it other than exercise and eat healthy brain food. I convinced my self that I am not going to worry about Parkinson's until my smell is completely gone and stopped paying attention to my body. Note the word completely. Otherwise my brain will make me think that I have diminished smell and will drag me back into the anxiety cycle lol.. Slowly all the symptoms miraculously disappeared within few months and my stress levels went down. I realized it was all my mind play tricks to heighten my anxiety because it got to the point my brain started craving for anxiety like body craves for sugar. So it comes up with something to match the picture. Note, If you take dopamine meds herbal such as mucuna or other otc, it may interfere with natural dopamine production. So wean them off so your body make its own dopamine
  9. 4 points
    I realized yesterday I never mentioned Houston. OMG. I can not even imagine how that city will wring itself out and get back to functioning. It isn`t ``Houston, we have a problem``, but rather ``Houston here. we have a problem!`` That city is going to need lots of support and generosity. The view of a Nursing home with a roomfull of ladies in their wheelchairs with water rising to their waists is stuck in my mind. What a fight for survival by people of all ages, race, politics and economic standing is taking place. There were thousands of people rising to the occasion to help one another. Humanity and Love for fellow citizens is alive and well in Texas. Canada hopes that you soon get back on your feet Houston.
  10. 4 points
    I actually have something worthwhile to tell you all. My DH does not have PD but does have trouble sleeping. We bought a new mattress cause we thought that was the problem. The new mattress came with an eye mask. He started wearing it at night and so far (at least the last two nights) he didn't have any trouble going to sleep and staying asleep. I'm hopping up and down. It wasn't the mattress, it was the light. !!!!!! This reminds me of the scene in the movie Blues Brothers where they say, "The band. the band.!" And do all those flips up the the front of the church and back.
  11. 4 points
    Hello Momof4boys, I was diagnosed at age 35 and started on Sinement about 8 months later. Best decision I made. I felt so much better. Like I was 10 years younger. Best thing you can do is research. There is a lot of negative press out there about Sinement (aka Cardopa/levodopa) The latest research show that waiting for fear of dyskinesias is un-founded. Yes those of that are on sinement have a greater chance of having them but it is just part of the progression of this wonderful disease. You will find people who say stay away from it and those like me that say don't wait. Patriot on the forum uses only exercise to treat his symptoms and this works for him. I could not use just exercise seeing as I need some relief from the side effects of the disease just to exercise. Since taking drugs I keep very active and most days people wouldn't be able to tell I have PD. Yes you will get to do activity with your boys. You may have to adjust the way you do them or plan more time to rest but you can still have an active life. I still work full time and have a full life outside of work. The good news is your boys will grow up with you having the disease and will think nothing of it. If you oldest is old enough to understand a good discussion with him may help. What has helped me the most..... exercise, staying active, eating healthy, maintaining an active life, working hard on not dwelling on what the future could have been and might be, living for every moment, and planning for the worst while hoping for the best. I hope this helps. Feel free to ask me anything Blessing Adam
  12. 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
  13. 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.
  14. 4 points
    Thanks for noticing my quotes. I can't control most things about PD but I can try to control how I respond to it. I think attitude has a huge impact on overall wellness. I refuse to give up. I may fall down or slow down but I'm not stopping. LAD
  15. 4 points
    This fell out of my book today.... peace- LAD THE PRAYER BE AT PEACE (By Saint Francis De Sales) Do not look forward in fear to the changes in life; rather, look to them with full hope that as they arise, God, whose very own you are, will lead you safely through all things; and when you cannot stand it, God will carry you in His arms. Do not fear what may happen tomorrow; the same understanding Father who cares for you today will take care of you then and every day. He will either shield you from suffering or will give you unfailing strength to bear it. Be at peace, and put aside all anxious thoughts and imaginations.
  16. 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
  17. 4 points
    To whom it may concern I’m 71yo and I was raised going to church and continued mostly through my adult life. Over my life time I’ve see the results of religion on cultures as well as individuals all in the name of some god whether it be the Christian God or whatever. The history of religion as I see it is one of control, deceit, death and destruction. Cultures have been decimated because Christian know better than everyone else how they should think, live and believe. It’s not enough for Christians to believe what they choose but seem bent on sharing that message regardless of the outcome and often in spite of the outcome. I have seen too many times in church the concerted effort of mass hysteria and brain washing all in the name of God. I see most Christians as bigots and racist with absolutely no understanding of human rights, human nature and the right to be human and simply left alone. Blue laws have existed in many states because Christians wanted to control what everyone else does and when and how they do it. The world and all its religions continue to fight for dominance because every religion feels they are the only one and true religion that represents the true God. If you were born in the Middle East you would more than likely be a Muslim, if in India a Hindu or Buddhist or Sikh. You will be the religion of your culture and they believe just as strongly as you regarding their God or Gods. How old is the earth? 6000 to 15000 years old according to your Bible? Do you believe that? Where is your mind on Evolution vs Creationism? Can any intelligent being on this earth think the world is only a few thousand years old? Or, even humanity is only a few thousand years old? How about Noah’s Ark? How many animal species existed at that time and how many could they get on the boat? Think about all the living creatures that are still being discovered today or haven’t even been discovered yet. Absurd the things modern and intelligent people will believe. Do you pick and choose your scripture to suit the moment or situation? Do you just ignore the parts of the Bible you disagree with or don’t understand? Religion is very dangerous as witnessed even up to today. I’m not going to argue any points but simply stating why I want no religion in any of my discussions on this forum. I am a free man to think and believe as I wish – I do not need a book of instruction to make my life valuable. I have children that love me and I love them. Sin or original sin???? What is that “an immoral act considered to be a transgression against divine law.” Nothing but a definition of something against Gods mandate. Gods law was very much different in the Old testament than it is now. I have never and will never believe in SIN. We as humans make mistakes in judgement or action but to me that is a mistake. I do not know if a God exists or not but I can say if he is accurately represented by todays religions I want no part of it. Ms Garren, a threat to have me banned? Again - who are you to exercise such power? I do not need this forum to survive or be human or happy or have a meaningful life.
  18. 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
  19. 3 points
    One of my latest music videos. Probably better to listen to than watch, since it doesn't show a lot. I tend to get stressed with a camera pointed at my face, versus pointed at my hands
  20. 3 points
    I've learned to accept fatigue. Its a normal part of PD, and gets worse as it progresses. From my experience, the best way to deal with fatigue is rest. Exercise and work when you can, rest when you can't. I quit working, and it was the best thing I ever did in terms of managing PD fatigue. No supplement or medication for fatigue has ever been a good long term solution for me, and I've tried them all. I find 2 hour naps, when tired, to be very refreshing. I take daily naps after lunch. In fact, I'm going to doze off in about 20 minutes.
  21. 3 points
    Just another update on DH. He had a fantastic Labor Day weekend. I brought him home for the day and he sat outside on the deck that my dear son built him the last time he visited us. This son passed away August 4th, and I am in deep grieving. But it was so peaceful sitting outside and I knew my son was looking down so pleased that his PaPa AL was enjoying the deck. On Labor day he had visitors that brought in Pizza and we had a great day telling jokes and laughing. This was at the Nursing home. Tuesday the Nursing home had their first Classic Car show out in the parking lot with about 30 cars. Two of the cars were once my DH. The neighbor now owns them, and with his help he brought them to the show. DH did not know this was going to happen, so he was in tears and so happy when the nurse wheeled him out and the first things he saw was his neighbor and the cars. I just cannot give enough praise and am so happy I chose such a great place for DH to spend the rest of his life. I can tell he is having new symptoms and the Home is right on them and I know they are from Parkinson's as does his doctors and nurses. He all in all is doing real good.
  22. 3 points
    Good evening e Hi LAD-y, you, or is it the turtle, are correct in saying forward is forward. And Attitude is a very big thing. I can have PD and be miserable to the world, or try to be pleasant. Either way, I still have Parkinsons. LAD-y (above) You must be very proud of your son advancing his education in health care. Peace, the grandson , story is cute. Yours too LAD-y. I have a similar one of my daughter. She wasnt very old, I had to take her in the mens rm. It wasnt busy, I used the urinal which was new to her. She told me that she had to pee too, can I use that, and she pointed to the sink. The world is funny through the eyes of a 3 yr old. And my son, about 5 years old. We had to pick up 4 wooden chairs for our new table set to replace damaged ones. They were in the back of my open truck and we were concerned about them if we stopped at the restaurant to eat because some one could steal them. After a discussion which likely seemed like hours to a 5 year old we were likely ready to drive on to eating at home, Mikey said "why don't we each take a chair into the restaurant and just sit on them while we eat" My wife and I looked at each other and laughed at our over worrying. The four of us sat where the truck was in sight. Problem solved... Im tired now, I will try to get caught up tomorrow.
  23. 3 points
    Thanks everyone. Just an update. DH had a high fever and seemed in pain. The hospice nurse's solution was morphine, but I was hesitant. She said pain and fever is normal for end of life. The aide and I made a discovery. He actually had an infection that had probably been brewing for a while--epididymitis--which likely came from a UTI. A very painful infection. A course of cipro stopped the infection. The fever and pain are gone and he is eating again. Morphine can mask treatable problems. He is still bedridden, profound dementia, but the last few days he has been enjoying produce, his favorites, corn on the cob if I hold it for him and rotate it, watermelon, and peaches off our tree with ice cream. He may make it for the tomatoes, cantaloupe and plums. I am tired, but carrying on with the tasks.
  24. 3 points
    So today was a kicker! I am the eternal optimist. With the prevailing wind against any lodging anywhere, I was able to get a lttle cabin on the lake for a week! For those who dislike long posts, I'll skip details. I am a firm believer in concepting.."anyone who can conceive and believe, wiill achieve." So on our bucket list...was a cabin on a lake, a small town 4th of July parade (which goes directly in front of our cabin), waterfront for kayaking, and quiet roads to ride big blue...BAM ! All in one pkg!! ? I concepted so HARD to have a bed to sleep in...our little van was great when I could curl up like a snail next to DH...not so now...hmmmm, restless leg X 2...acting out x 1...frequent bathroom breaks x 2...etc...etc....WAY more than we could do...so we are especially grateful to have more space. We start tommorrow. Grinder, these van conversions are great...started by Canadian company...called Roadtrek. They sell for nearly $70,000. We got ours from my mom with low mileage...but it is sooo great to have potty, bed, and a cold drink within hands reach. We spent the day at a national park lakeside...and seldom left the van...we were tired...but reading a book while seeing the water, sky, and trees ....protected from bugs and sunburn......it was all good. Actually, to sound corny, I think of the forum each day...we are grateful, and recognize not everyone has this opportunity...I am sharing to prove that even with the darkest clouds ahead, we can still exercise a degree of control of our lives. As I have said, quite honestly, DH & I were wasting most of our time inert...resting all day...just existing. Our bucket list forced us to move again...and tho we can't do as much, we see the world is moving...families are at picnics...teens are on jet skiis...and it motivates us to want to immerse in nature's bounty...feel wind, smell newly cut hay... or decipher images in clouds together... it ain't been easy...but so worth it. ? NN
  25. 3 points
    Dear Linda, Compare the length of your posts to the post of the others . Try to write in 2-3 sentences what you want to say - taking into account that this info should be useful for the author. And maybe you will see why pdmanaz respond so angry. When someone writes such a long posts it makes very difficult to navigate through the thread . Especially when the long post has almost no useful information. If you answer pls try not to write more then 3-4 lines. Thank you.
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