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  1. 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.
  2. 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
  3. 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.
  4. 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
  5. 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.
  6. 5 points
    Why can't Linda post what she wants? If anyone doesn't like her posts, they can simply ignore them. Easy!
  7. 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
  8. 4 points
    Without any attempt to start a thread I post a periodic Bible verse that may be the source of some strength, comfort, or inspiration to my fellow "Parkies" in the best or worst of times as we deal with our challenges. Feel free to add a verse if you wish for those so inclined on this topic. It would be helpful if you mention what bible translation your verse is from if you do post. Have a great week. Romans 8:35-39 (KJV) Paul to the church at Rome Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? As it is written, For thy sake we are killed all the day long; we are counted as sheep for the slaughter. Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.
  9. 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.
  10. 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.
  11. 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
  12. 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.
  13. 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
  14. 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.
  15. 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
  16. 4 points
    Welcome. I am 46 and I probably started with my significant problems at about 40, probably some minor ones before that. I am glad you found it so early and have time to plan while he can take on diet and exercise. I was un-medicated until I turned 44 and I did ok, but was relieved to find answer by then because things were getting difficult. So, now I am on meds and doing ok. I have 4 kids, and they have managed pretty well with it also. It really affects the whole family in some ways, but everyone understands. So, I know I will be managing ok for a few years on medicine alone because I haven't been on C/L until late 2015. I also started on Neupro; which was great until I had problems with side effects. I was doing it for the same reason you are concerned about. I am now looking at DBS as an option to hopefully reduce the medications and have another tool to fight the natural progression. Even without it, I am able to get on my bike and take short trips with the kids. Things are better for us than they were before, so we have we don't see it as despair, but a chance to do more together than I originally thought possible. You will find there are many options available for him and the path is not as grim as it may seem today.
  17. 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
  18. 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
  19. 4 points
    Great thread! Thanks for starting it. I know the following is referring to possessions but it still makes me stop and think before fretting over the everyday stuff---including my future with PD. Its been posted on my refrigerator long before my diagnoses.
  20. 4 points
    loveya1971, The first thing to do is take a deep breath. Absolutely nothing has changed simply because you were diagnosed with PD. You are no worse off the day after you were diagnosed than you were before being diagnosed. Were you crying and feeling lost in the months and years before being diagnosed? The latest thinking is that people likely have PD for 20 years before being diagnosed. You've likely had PD for 2 decades and didn't even know it. Nothing has changed, you still have PD. Next, realize that you can and should get BETTER! That's right, better! Now that you know you have PD, you can start treatment. No, I'm not talking about taking any of the dangerous PD drugs that are often worse than the disease itself. I'm talking about EXERCISE, which is the only thing shown to slow the progression of PD. Furthermore, starting a PD exercise program should improve your symptoms and help you to feel better than you have in years. When I was first diagnosed with PD, I walked like a 90 year old man. I had to hold both rails to walk down the stairs in the morning. Daily exercise fixed that. I now walk a MINIMUM of 12,000 steps a day (about 5 1/2 miles) and usually walk a lot more than that. Last week, I had two days that I hit 30,000 steps. When you are diagnosed with PD, you have a choice. You can sit in the corner and cry; go get a handicap sticker; buy a walker; and decide that your life is over. OR, you can decide to take your life in your own hands and fight!!! You can start a PD exercise program; eat healthy; maintain a positive attitude; and live your life normally. The choice is YOURS!
  21. 4 points
    Advice? Have as much fun while you can, and don't fret. Key thought? "You will NEVER feel better than you do today"....so, anything you want to do: travel, sports, work, love, etc, do now. Yeah, maybe they will cure it in 10 years. We can all hope. But in the mean time, live for today. I am having more fun NOW than I did 20 years ago. I am a little worse today, than this time last year. And last year I was a little worse than the year before. Don't let time sneak past you. Go out and have fun.
  22. 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
  23. 3 points
    This is not the end of the world for your husband or for you either. Were you this upset when you didn't know what the diagnosis was? Parkinson's progresses very slowly so you have a lot of good years ahead of you before it gets in your way. By that time there might be better solutions and you'll be used to and prepared for all the different changes. You need to take a step back. The best advice I can give you is for your husband to start a vigorous exercise program as that is the only thing known to slow down the progression of PD. Dave
  24. 3 points
    Sorry to hear this Afroney. My mom is sort of in remission from the C-Diff (KNOCK ON WOOD) but she is having problems gaining back the lbs she lost during this time. My mom weighs less than 100 pounds now so she's skin and bones. She lost about 20 pounds from this horrible disease. We all take a lot of things for granted or react negatively to certain things. When I see someone complaining how they need to lose a few pounds I tell them they should be thankful that they can have the pleasure to eat what they want and have some reserved weight on their bodies for when they get sick they can afford to let it go. My aunt is very petite and has always been under 100 pounds due to strict dieting. I told her if she ever gets a disease like C-diff there would be nothing left of her so she better start eating and enjoy it while she can. No one is going to be on their death bed relieved that they lost those last 5 pounds and had focused their time and energy doing so.
  25. 3 points
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