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Showing content with the highest reputation since 09/19/2017 in all areas

  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. 5 points
    This exercise post is near and dear to my heart. I am 55 years old and in pretty good shape. I have always been physically active. I've been involved in martial arts for years and I also enjoy going to the gym and lifting weights, among other things. I was diagnosed about 3 years ago. Even before my diagnosis I was starting to slow down on some of my activities because of excessive fatigue. I still go to the gym and my martial arts classes. I just don't try to be superwoman anymore. When I read that study that says intensive exercise will stop progression of the disease I was excited and thought "Yay! This proves what I already believed" because my progression has seemed to be slow so far. So I jumped on the bandwagon and increased my exercise. I enrolled in some classes at a local MMA school called "Fight Fit" which is basically an extremely difficult HIIT class that lasts for an entire hour. I was very proud of myself when I made it through the first class. However, this was not without a lot of increased tremors going on and literally almost no energy to get myself in the car and drive the 2 miles back home to my house. The next day I was exhausted and I felt like every last bit of dopamine had been wiped out of my body. Hmm...I thought exercise was supposed to make you better and increase your dopamine production. Where are those endorphins? I don't like to give up because like I said...I'm hardheaded, I'm a woman and I think I can be superwoman. The article says I need intensive exercise will make me better so I'm not giving up. I ended up going to 2 more classes. When it was time to go to the next class I literally cringed inside. I couldn't bring myself to go and do that to my body again. I loved the actual exercise and the comaraderie of the other women in the class. But I just felt sooo bad after the class and the next day. My symptoms actually started getting worse and then I started feeling depressed. Yes I know that I can do other exercise but I've actually been having a hard time in some of my martial arts classes lately because of an increase in tremors. I actually quit my Saturday class cause they practiced for 3 hours. I have felt like a failure because I'm now doing less exercise than I was before diagnosis. Yet everybody tells us that you must do intensive exercise. I talked to a friend who's had this disease for 25 years. She made me realize a few things about this "study" that is posted all over the internet. 1) This is not a scientific study by any means. 2) Everybody progresses at a different rate so you can't compare one person to another. 3) There's no way to determine how much somebody would have progressed in 6 months if they had not done the exercise. Seriously, there's no baseline. Six months is a very short time in the space of a lifetime. They might not have gotten worse during that time. 4) What the hell is "intensive exercise?" The study doesn't even mention how long the subjects exercised for. Obviously intensive exercise will be different for every person. So I decided I'm not going to let myself get depressed because I can no longer do "intensive exercise". I'm going to continue doing whatever I can. I'm really sick of all the people who post pictures of themselves doing bodybuilding, running marathons and similar things and trying to tell the PD community that they are not progressing because they are doing this intensive level of exercise. Maybe the truth is that their disease is progressing slowly so therefore they have the ability to continue working out like that and not the reverse. Seriously, an entire year before I ever had a tremor or other symptom of PD I suffered with extreme fatigue. At the time I was going to the gym doing a five day split, lifting very heavy (for a 110 pd woman). I was so tired in the evenings, I could barely make dinner for myself and my teenage son, then I would be crawling into the bed. My mom kept telling me to go see the doctor because that wasn't normal. Of course, I refused because I thought it was just because I had increased my weight lifting routine and I just needed to get used to it. I didn't want to quit because I had a goal. Anyway, the doctor's would have never figured out what was wrong with me even if I had gone cause I was misdiagnosed even when my tremors started manifesting. I'd like to end all this rambling to say that PWP should always keep moving and do whatever exercise they are capable of doing even if it's just walking. Yes, it will help you to feel better and probably help to keep your muscles from becoming rigid and locking up on you. However, there is no scientific evidence that it will keep you from progressing. Likewise, you are guaranteed to feel like crap if you give up and lay in the bed all day.
  3. 5 points
    Hello Debsten, One of the things I did and still do when I was diagnosed at 35 years old is to celebrate everything. The more we celebrate our every accomplishment the more dopamine our brains will produce. I celebrate getting out of the chair on the first time. I celebrate being able to drive, go to work, not having something terminal, and so on. This sounds cheesy but it does help putting you in a more positive mind set. This disease responds well to positivity and a can do attitude. Of all the people I have met and talked to, it was the ones that were positive and tried hard to stay there that do better. Exercise is also the only natural way I have seen to help this disease. I come from a back ground of treating all my ailments with naturopathic and home remedies first. With Parkinson's I have found only exercise to provide positive results for short and long term. Most MDS's you find will tell you if you feel better using said natural treatment then do it. I have and still continue with diet changes, supplements and acupuncture. Unfortunately there is little to no scientific data for natural remedies that doctors can access to say this works better than this treatment. I went from taking the occasional advil before diagnosis to taking 330 pills a month now. It is unfortunate but after 8 months of trying to fight my stiffness, tremors, and slowness of movement I could find nothing to relieve my symptoms that wasn't prescribed. Exercise helped but it did not last long enough to cover daily symptoms. Once I started with Cardopa/levodopa and azilect I found the dark cloud of doom that I had no idea was following me, had disappeared. I feel so much better now and I am still using all of the natural treatments as before. I found that once I could ease the symptoms and accept what was happing to me, my life got so much better. I can honestly say I was very happy prior to diagnosis and I am even happier now 3 years later. It is hard to explain but going through the process of getting diagnosed to acceptance changes your priorities and life goals, then you look back and realize, life is good, and in the reality of it all I could have it a lot worse. It is tough. Trust me we have all been where you are. It is ok to get angry, it is ok to cry, it is ok to scream. Just remind yourself of all that you have and still have. Soon that bright light from the future you thought you lost will start to shine again. I promise it gets better. Blessings Feel free to ask any question you might have.
  4. 5 points
    Hello BlueLion, Don't say you're sad for your young kids. For one thing you are still young and chances are you will witness new discoveries (meds) /maybe a cure ?? in your lifetime. Second, in my experience, my son (whom I had at age 40, some 6 years after diagnosis ) has grown up with a PD mom and has evolved into a very considerate person, always there to help others in difficult situations and does not seem to have been affected by his mom's disease. He will turn 25 on December 26 and is a very positive and successful young man. On April 1st last, I celebrated my 30th anniversary of diagnosis. Am still around, doing reasonably well (I had surgery in the meantime). PD is not a life sentence. You can keep an almost normal life (except for taking meds). So enjoy life and treasure every moment. Take care, Mireille
  5. 5 points
    How a person lives their life after getting a really bad diagnosis is likely to be much of how they are remembered when they are gone. I got Dementia with Lewy Bodies, so I got dementia and all the parkinson stuff. I haven't killed myself because I don't care to die and I do want to enjoy whatever my situation is the best I can, and I want my family and friends who stick around to see that there is life after getting getting hit with a hardship. Sounds corny, but that is why I haven't killed myself yet. The parkinson stuff is a real kick in the butt, but the progressive dementia stuff is quite ruinous, but between the two things there is still some light to see the day. Cheers.
  6. 4 points
    hI dIANNE, Another year slips around. Another anniversary of remembering his Life as well as his Death. I learn from you, my friend. You are a great person Dianne who has been through a lot. Where I would see a wall of dark trees hiding a murky puddle of mud, You continue to part the branches, find a forward path, the sun streams into the clearing with you (or are you the sun?) and the mud puddle becomes cute little pond of water, floating a family of little fuzzy ducks, and surrounded by flowers, green grass and forest animals coming to drink from the clear water. I hope that your weekend is good. All the best to you, jb
  7. 4 points
    You are a mom. It's probably in your DNA to worry forever. Take care.
  8. 4 points
    Pure nonsense! The top 1% of earners pay 45% of individual income taxes. The top 20% of earners pay a whopping 84% of individual income taxes. Forty five percent of Americans pay no taxes at all. How much of a tax break should people get when they pay absolutely no taxes and when many get 'money back' (earned income tax credit, for example) when they didn't pay anything in the first place? Corporations and businesses do not pay taxes. Corporations and businesses pass their taxes on to consumers. When the corporate tax rate is higher in America than other countries, corporations move off shore so that they have lower taxes to pass on to consumers and therefore lower prices giving them a competitive advantage. I don't remember you saying a word about the national debt when Obama was President. He DOUBLED the debt. Why didn't you complain about that?
  9. 4 points
    I feel so much love and support from you, dear friends. As I leave for another day at the hospital with my family I will take y'all with me. Love, Dianne
  10. 4 points
    Good Morning, “Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.” -S
  11. 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/
  12. 3 points
    @ waruna01 (and apologies to Debsten for going slightly off-topic on your thread), Although I'm sure you mean well, and I'm happy for you that your self-diagnosis of PD was incorrect, I think your focus on loss of smell is misplaced. In my own case, I've been diagnosed with PD for over three years. Initial dx was by an experienced MDS, with positive DATscan last year as part of a clinical trial. I have movement symptoms that while mild, are absolutely classic presentations of early PD. And guess what? I still have my sense of smell. Having cooked professionally for a number of years, trust me--I would have noticed if it was going away. I asked my MDS about this. His response was basically a shrug: Sure, lots of people with PD lose their sense of smell, but some don't. In his opinion, there's a lot better diagnostic tools than having someone sniff a banana. This is a guy who did his MDS fellowship at a top PD research center, is currently conducting 3-4 clinical trials, and is part of a practice with (IIRC) more than a thousand PD patients. More to the point, there's all sorts of reasons a person with PD might want an early diagnosis. First, for many of us knowledge is power. Knowing what we have gives us choices about what to do about it, and how to plan for the future. For someone affected by non-moter symptoms such as anxiety or depression (and those of us with YOPD are especially vulnerable), knowing these feelings are caused by the same lack of dopamine that causes motor symptoms can be a lot more comforting than trying to figure out why mental health issues seemed to have suddenly come out of nowhere. For motor symptoms such as tremor, rigidity, and slowness, early treatment with PD meds can provide mild-to-significant relief. That can make it easier to exercise, be positive about the future, even forget from time to time that you have PD. The evidence is, because PD is progressive, whatever current level of relief a person gets from meds, that effect will always be *less* down the road. You can't hold off meds until 'things get bad' and expect meds to have the same efficacy they would have early on. PD isn't a death sentence. I'm healthy, active, work full time, and expect all that to continue for years to come. In my case, early diagnosis gives me an incentive to make sure these years count (more travel, more doing now what I had been putting off for later), and do some planning for the future that everyone should be doing regardless (e.g., saving more for retirement). Knowing the choices I have, and making choices with regard to things I *can* control, makes it easier to accept the things I can't control.
  13. 3 points
    You have to be the one to make the effort to change how you react to people. There is only so much a person can take or is willing to be someone's emotional or physical punching bag. We all have some form of demon that we are facing. It's up to us to break free and look beyond our own problems. I do a lot of boo hooing of my life and how it's been going but I made the choices and I live with it. Whatever you are going through now you are still better off than a lot of people in the world. I see it that way. Take care.
  14. 3 points
    I would like to give my Holiday Blessings and well wishes to everyone who is a care giver. With out you the out look for us Parkies is bleek. You are the un-sung heroes in all of this. What ever you celebrate this time of year this is my prayer to you all; "May the divine in your life grant your wishes and prayers. May you find joy and peace in all that you do, have done, and continue to do. For you embody all that is good and right in this world. May divine forever wrap you in love, light and their compassion. May you forever be blessed in your life. For this I pray, in the name of all that is divine." Happy holidays and a magical new year to all Blessings Adam
  15. 3 points
  16. 3 points
    It was so nice to read posts with opposing views that were well thought out and respectful. My big thing with hunting is that it be done humanely. There are different qualities of hunters out there and not all are of your high quality Stump. I would like to recommend a book that some of you may like. It's Some We Love, Some We Hate, Some We Eat by Hal Herzog. It's about why its so hard to think straight about animals. It's been a few years since I've read it but I found it an interesting read. With that said, I would vote for a separate thread labeled Hunting also as even though I eat meat, I do find it disconcerting to read or hear about a kill. Thank you Stump for your well thought out response. I can't kill an animal but because I do consume some meat I'm glad someone can. Temple Grandin has a book out called Animals Make Us Human. She understands animals and works for their welfare and has made huge advancements in the slaughter industry. She's a prime example of one who loves animals and advocates for their humane treatment by educating and implementing improved conditions in slaughter houses by reducing the fear and stress factors for the animals. It's also a truly good read even for those strongly opposed to the killing of animals. It really is possible to love them and eat them as odd as that sounds.
  17. 3 points
    Stump started this thread discussing fishing, kayaking, and hunting. Here's a thought! How about at the first inkling that you see something you don't like, stop reading and move on to the next post. What is wrong with people in today's society that thinks that everyone else should change to suit them? People post stuff online every day that I don't agree with. If I don't like it, I don't read it. Stump, keep on posting. I don't hunt much anymore, but I love eating game that my sister and niece bring home. They both got 8 point whitetails this weekend.
  18. 3 points
    I visited my son for his 21st birthday!!! so blessed with my boys!! LAD
  19. 3 points
    Thank you all for your inspiring words and advise from your experiences. I got my confirmed diagnoses a little over a month ago and at first I thought I'm too young at 54 for this, I was suppose to be healthy and able into my 80's like my parents. I've always been a very active person and totally "on top" of everything. I started noticing a difference about 2 years ago and have been struggling to keep up with everything the same I way I always have. I kept asking myself, why do I feel so old and sluggish and why can I not do what I use to? I was beating myself up. But now that I have my diagnoses, like many others have said, it's been a relief to have answers to the "why" and after reading everyone's encourage words, I actually realized it's all OK. I think the biggest thing for me, I've finally given myself permission to slow down a little and accept I might not be able to do everything I once did and by doing this my stress level has dropped tremendously! I've decided I'm not going to work all the extra long hours, I'm going to take all my vacation time and so what if the house isn't spotless. I truly feel like I'm a happier person. Thank you Parkinson's for giving me a reason to slow down and smell the roses (if only my sense of smell was better )
  20. 3 points
    Good morning everyone, Good morning Ginger LAD and Violet Linda, Thank you for the kind words. My sister Sue tells this story from long ago better than I do. Mom was cooking supper for a family group that was coming to her house. Alice had been sick that week and as supper cooked my Mom was making soup for her. Sue was trying to help Mom with cleaning up to make ready for the incoming company when she realised that Mom was going to Alice`s house up the road to deliver the soup. We better get cleaned up here Mom said my sister Sue. First I deliver this soup my Mom replied. Alice is a lot more important to me than Company finding my house in a bit of a mess. Kind acts that help others cannot be given a dollar value, but if they could, My Mother has given away a fortune in her lifetime.
  21. 3 points
    Hi Doubleup, I empathize with how troubling all the uncertainty can be. But if it were me, I would be very hesitant to pay out-of-pocket for a DaTscan. Clinical diagnoses by an MDS is very accurate--as accurate or more so than a DaTscan. For example, my PD symptoms are quite mild--a couple weeks ago, I participated in a presentation to first year med students about YOPD. Only about a third of the group was able to see that I had any symptoms, in spite of having just seen an MDS give me a neurological exam and being told (by both of us) exactly what to look for. Yet, three years earlier, when my symptoms were even less apparent, my MDS was able to diagnose PD in about 15 minutes. Someone who sees PD patients day-in, day-out, with all sorts of different symptoms, gets very good at spotting even early, mild PD. If your MDS isn't seeing it, that's worth really thinking about. I was offered a DaTscan at diagnoses, and my MDS said they would push the insurance to pay for it. I told him if he was sure of the diagnoses without the scan, that was good enough for me. As it happens, I had a DaTscan this summer as part of screening for a clinical trial (no cost to me)--the results clearly showed PD. The odds are very high you will spend a lot of money to get the scan, and still have no answers. If a PD specialist can't give you a clinical diagnoses at this point, it seems unlikely medical treatment for PD will do you much good either--there are NO proven disease-modifying medications available. Exercise and good diet are always good approaches, PD or not. So is financial planning, esp. as PD can mean earlier retirement than planned. If it were me, I'd take the money I was going to spend on DaTscan and put it in my 401k.
  22. 3 points
    My DH always answers the question "How are you today Al? With "I am fit as a fiddle!!!" Even if he is having a bad day. Their response is always " Oh so glad you are having a good day." It brings a smile on their face with his comment and it makes him feel good with theirs. Being in a Nursing Home he is asked this every day by nurses, staff and residents.
  23. 3 points
    Good morning M2Boys, I've travelled this trail. 1. Keep in touch with LAD above. She could be a wonderful guide for you. 2. Requip is an agonist and there is much to find out about that class of drugs. 3. Be very careful with Requip in your system. I was on it for about three years a long time ago. I have fallen asleep with a hot tea cup in my hands, listening to someone tell me something and driving was not safe when I look back upon those days.. It doesn't affect everyone the same but I think it was not a good choice for me. Be strong, yoga is good for lots of things. Stay positive. All the best to you, jb
  24. 3 points
    Good morning everyone, Nobody makes lemonade out of lemons like Dianne does. Bless you Dianne and I hope you are feeling better. LAD, your family loves you well. Your sons sound wonderful and it must be a very nice feeling to have them attentive to your moments when you need a hug. Peace, that is nice that you can look at that less than perfect un round Canadian penny and think of me!! What did you do to that poor penny?.You didn't put it on the train tracks and saw it get squarshed did you? I'm just joking of course. That is a cute story you shared. I am sure that it was in good shape when it left the mint and Canada. It is still worth one cent Peace but in Canada, pennies are out of circulation and transactions involving cash are rounded up or down to the nearest nickel. It isn't a 1958 penny is it? Probably it has maple leaves on the one side and the queen on the other.. The bank still takes them back at face value but they have to be rolled up. Oh Unround Penny, what roads have you travelled? It may of fallen from a pocket of a Canadian tourist who travelled to Nashville to see Reba in concert. Some kid picked it up and had enough to buy some penny candy. When the clerk counted the change that night and made up the days deposit, he realized that he didn't have enough money to pay the wholesaler next day as promised. In despair and needing dental work done on his aging and sometimes achy teeth, he saw that there was an odd Canadian penny in his hand and he threw it in disgust out the door where it rolled to the gutter., I shouldn't have done that he sighed, every penny counts these days. Out the door he walked to pick up that strange Canadian penny . Why do I bother he wondered as he searched the dirt for that coin. Just then a blast erupted and the ancient gas fired gum drop candy oven blew up. Wow, I had been sitting right beside that old machine before I came looking for you and he picked up the coin from the dust as the sound of fire engines came to his ears. That strange Canadian penny was all that was left of that days receipts he realized. But the next day the insurance agent appeared and gave him a huge cheque to cover the loss of his business which in fact was over insured for some reason for three times what it should of been worth. Also it had been a money losing venture everyone of the 15 years he operated it. As fate would have it, the burnt out site was now vacant and two months later he put another huge cheque, signed by a Canadian lady named Twain, in his pocket for the sale of the property. Now, with a lighter step, he packed up his car with his wife and two kids, and said goodbye to Nashville. He was going back to Texas, bankrolled with his insurance settlement, the property sale money and deep in his pocket, a funny looking Canadian penny. His lucky penny! Yes, he was going to go back to Amarillo to take over his Uncles piano tuning business. I hope you all have a lucky day. Thanks Peace, happy trails to you jb
  25. 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.