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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. 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.
  3. 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!
  4. 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
  5. 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/
  6. 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
  7. 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.
  8. 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.
  9. 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
  10. 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
  11. 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.
  12. 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 )
  13. 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
  14. 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.
  15. 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
  16. 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
  17. 3 points
    I used to read this forum religiously, but stopped because this running debate over TUDCA had become over the top tedious. I just tuned back in assuming everyone had finally gotten bored repeating themselves and moved on, but not so. The simplest concept and most obvious observation that every person on every Parkinson’s forum immediately figures out is that some drugs and supplements work for some people and not others. Is that really so hard? If a particular drug or supplement does not work for you, the only intelligent thing you can say about it is that it does not work for you. It is fundamentally ignorant to argue a supplement doesn’t work because it doesn’t work for you. The TUDCA skeptics, for example, have written many posts telling us what has worked for them, yet I don’t see anyone questioning the veracity of their comments. Everyone who reads their posts has the class to take them at face value, yet for the better part of four years now and the better part of 47 pages, they have disparaged Mr. Fritz insisting that TUDCA does not work - even though there are others who say it does. The only conclusion one can draw is that they are not so much interested in teaching and learning, that is, helping other PWP as they prefer being argumentative. “What does TUDCA do?” It helps some people with Parkinson’s disease. Is that simple enough? I believe Mr. Fritz must enjoy this endless back-and-forth as much as the naysayers do, otherwise he would’ve quit responding long time ago. Get a life, people. See you next year.
  18. 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.
  19. 3 points
    Super, At first, it is overwhelming to say the least. You need to go through the grieving process leading to acceptance. Once in the acceptance place, you will encounter new symptoms that will force you to go through the process again. We can only find peace in the acceptance mode. Living in denial, anger, depression or compromise is more difficult. I deal with PD by 1. keeping a positive attitude, 2. looking for the right medication cocktail, 3. exercising, 4. resting, 5. eliminating stress, 6. staying warm. Having PD is like a new life you have not chosen. Forget the old one, or at least detach from it otherwise nostalgia will lead to frustration. Try not to look too far in the future as this will lead to anxiety, causing stress which will exacerbate symptoms. Be grateful for the positive aspects present in your new life. It is a marathon, save energy, don't rush. Be systematic and analytical. You will become the PD expert for yourself. Don't compare too much to others as we are all affected differently and progression is different for all. The future has too many unknowns, stay in the present as much as possible.
  20. 3 points
    Hello, Rainbow -- Lots of questions are good! No need to apologize. I was taking Pramipexole and Amantadine before Rasagiline came on the market. But as soon as it did, my doctor wanted me to add it to my regimen of drugs, which I did. It is hard to say what each drug accomplishes for me, but I know that Pramipexole (Mirapex) is my chief symptom fighter. It eliminated my handwriting problem, any tremors I had, my awkward gait, and more. Whether Amantadine or Rasagiline or both may be responsible for delaying the disease's progress I do not know. However, I have now had PD more than 20 years, and I am still in the first stage of development. My doctors are not sure why, but we don't want to change anything in my treatment when I am lucky enough to be doing so well. Exercise is important. For many years of my PD, I exercised strenuously and often. I am now 71 years old and have slacked off a lot without noticing any difference. I read an article not long ago stating that exercise beyond 45 minutes does not do any more for the body. My results make me believe it. I used to work on weight machines and the elliptical more than I do now. I have been practicing tai chi for five years and find it very helpful with flexibility and balance. I also walk two to five miles per day five days a week over quite hilly trails and sidewalks. If your mother is young and can do more, bicycling is reputedly excellent for many PD patients, too. Or she could join a square dancing or line dancing class. Your mother is fortunate to have you as her support and her researcher! Good luck to both of you. J
  21. 3 points
    Miracle, wise I'm not sure about that! Lol However I'm tired of others pushing their "opinions" and "no that won't work" or "what, your not on Sinemet yet, big mistake" I am the only person who will make my choices. If my choices are wrong it's on me. If they are right it's on me. This insidious disease is hard enough on us, having people nattering in our ears makes it down right impossible to keep in our lane of sanity. I play hard, laugh loud and love always. ...this keeps me afloat. Cheers MS? D
  22. 3 points
    Rainbow, One thing I have learned in the past 3 years is to do what works for you. The Forum is a great place for info and chatting with others in the same space. Though at the end of the day we are all different in our progression and mind set. My beliefs will be different from the next who is exactly where I may be in the disease symptoms but chooses a different path. I am a strong believer in exercise and a healthy mental state. If you lack in one the other won't survive. I sense that you are a caring daughter one that will do what it takes to keep Mom healthy. I admire that kind of love. All the best D
  23. 3 points
    George, Whether you take or delay meds is sometimes a hot topic depending on your opinion. One thing I have personally noted from my own experience is if you're focusing on the disease, your symptoms are gonna be magnified quite a bit. First, you need to find things that will distract you from having PD. It's not going anywhere, so fretting about it is wasted energy. Excercise everyday!!!! If you still feel that your quality of life needs something extra, then by all means discuss with your doctor on what they think would be best for you. You could try starting with Azilect to see if it might help (pretty rare if it does, but still worth the attempt). Be careful with the agonists as they can cause some serious unwanted issues. Not everyone experIences these problems, so if you go that route have your family keeps tabs on you. If all else fails, you can go for the gold standard of Carbidopa/Levadopa in the form of Sinemet or the new formulary which is Rytary. If you decide to go the meds route, it might take some time to find the right combination/dose that will improve your quality of life. I take Azilect and Rytary. It took nearly two years to find the dose and timing that provides the best relief for me. Patience is the key when it comes to Parkinson's. It progresses slow, so time is on your side. Regards. Dave
  24. 3 points
    Big weekend in my corner of the world.... My oldest graduated from his Physician Assistant masters program and will sit for his boards certification later this month. My youngest finished his 23 production but it was the first as the lead. And to celebrate.... My middle son threw quite the party while we were out of town at the graduation. I still can't figure out how many people were in my house. It was relatively clean so I'm not going to investigate. Hope you all had a great weekend and here's to Monday being over!!! LAD
  25. 3 points
    Good morning Parkys. Hope you all had a good weekend. For Canadians, it was a long weekend, I spent some time with my brothers and sisters at the family cottage. Mom was there for a day too. It was fun. hi PolyParkie, and SoCalGal. Great Vid LAD, where does your son get that outgoing exuberant talent I wonder. Oh to be 13 and wishing I could shave ...that seems awhile ago to me. Hope you are doing good Dianne, and Linda. I hope you guys that read this column, soon start writing some posts here, the numbers are a little lopsided here, men and women posting that is! , Why is that? I really don't mind but c'mon you guys, jump in here anytime, it isn't a 13 year old school dance with us standing along the walls, Good days to everybody. jb Fists to the sky in defiance to this Parky thing that tries to drag us down.
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