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  1. 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
  2. 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
  3. 2 points
    Hi everyone, back to "Good Morning," "cat had my tongue" for awhile........ JB - Sure do wish you Good Luck with DBS, I have heard and read about remarkable outcomes......"remarkable" in a good way! LAD - You have a lot to be proud of, sounds like you have a wonderful family, lots of support too!! Dianne - "Acceptance" is the absolute key to everything in life. I have never been real good at this, I am working on it though, as you say, "it is the least stressful way" to handle life. I have always wondered if being an only child is going against me in that area.........just a thought....
  4. 2 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
  5. 1 point
    As a registered nurse who spent 9 years working in a large hospital, I cannot begin to tell you the amount the truly unfathomable amount of waste in our current healthcare system. In lumping disability with the insurance system, roughly 50% of my patients under age 65 were on disability. Most, for reasons unknown, as nothing in their medical records would indicate that they have a disease or condition that would keep them from working. My fellow nurses and I always said there were three main things that will get you on disability: eating too much, drinking too much, or doing drugs (both prescription and illegal). The point is that a large percentage of money spent on healthcare and disability in the United States is caused by people's poor behavior and poor choices. If we continue down the path we are on, total collapse of the healthcare system is the only inevitable outcome. And this isn't even getting into all of the unnecessary testing and procedures performed just to protect against liability on the off chance that something goes wrong. I have heard many doctors state while they were writing orders that they didn't believe this test or procedure was truly necessary, but they just couldn't take the chance. I have heard some very compelling arguments for both a free market system and total socialized healthcare, and I am really not sure which would be the best solution as both have positives and negatives. However, I believe that we MUST scrap the entire healthcare system that we have now and pick one or the other, as the mixing of the two that we have now is not working. Either way, the real problem is going to be the people who willingly choose to do things detrimental to their health and then expect society to pick up the tab. In my opinion, most everything should be legal, but come with penalties. For example, if you choose to smoke cigarettes - a habit that has NO benefits no matter how you look at it - then you should forfeit your right to ANY social/government support other than assistance in quitting. We have patients in the hospital being wheeled outside less than 24 hours after bypass surgery to smoke! The same applies to Type 2 diabetics. We have so many of them come into the hospital with DKA and do nothing but sit and eat fast food, regular soft drinks, and candy the whole time while we're giving them outrageous doses of insulin to try and get their glucose down. I could literally write a book about what I have witnessed as a nurse - and may do it. People just cannot believe it unless they see it for themselves, though. It was totally infuriating and frustrating as a Parkinson's patient to have to wait hand and foot on many of these patients on disability who were younger and in better condition than I was. They have a total entitlement mentality and don't mind letting society pay for every little thing that they want. Anyways, that's my 2 cents worth. Kevin
  6. 1 point
    So true Dianne! PD has brought some unexpected good things into my life....life is different than I planned but it's still going to be a good one! Thanks for the reminder! LAD PS-JB- it was a crazy busy weekend and very emotional....but it was GREAT!
  7. 1 point
    Beautifully stated, Dianne.
  8. 1 point
    Hello Everyone. I trust that everyone has choked down their fistful of pills, recharged their dbs power packs and topped up the duopumps. Bard, its official, worst summer of wildfires in British Columbia. I hope that the fires soon get under control. LAD, that was a busy/proud weekend for your family. Hi Peace, Marcia, thanks for the well wishes . Linda, Dianne, PF, and everyone else. Have a safe and happy weekend. Its Friday, and whooo dont love a Friday. Be safe, strong and thoughtful of others jb
  9. 1 point
    Hi! Yes, I'd had to dismiss the inflatable bed as well! I am in the UK but I've found another link for the Raizer, which might be better for you? It's the website of the actual manufacturer of the product, I think (The previous link I sent was for a UK supplier.) and it looks like they have some US suppliers. I hope its cost doesn't end up being prohibitive - estimates for healthcare services and products in the US always sound eye-watering to me! https://www.raizer.com/ When I was looking into electrolyte supplements, I had heard that Gatorade and other 'supermarket' sports drinks don't offer 'serious' electrolyte replenishment - my brother sent me a load of products from one of those sports shops that gym bods go to for their muscle-building protein tubs, say (my brother does distance running). I make up a solution from a powder sachet by a UK brand called Science in Sport...I don't know what the US equivalent would be. All the best, humbly submitted. Moops
  10. 1 point
    Much of your story sounds familiar. I was also diagnosed at 38 with 4 kids and wife that's a SAHM. Also noticed a fair bit of progression early on. The similarities though stop about there. As you will hear often around here everybody experiences PD somewhat differently. Had you come here before informing your employer most would have advised against that move. What's done is past, but depending on who you work for that could turn out to be a neutral move, or a poor choice. Rarely is it a positive outcome when first diagnosed. Eventually you are forced into disclosing, but putting that off can have advantages. After 2 years I have still not told my workplace, and don't intend to change that for many more years if I can help it. Anyway, regarding meds, I started on Sinemet right away. I felt like I had 5 years previously. Tremors went away, anxiety (which was really only a few discrete events) went mostly away, and that feeling like I just wasn't quite all right (which had been there for several years before tremors started) went away. Only side effects I've had were some easily mitigated nausea when I'd take the meds (eating a cookie was plenty) and after a year or so an increase in daytime sleepiness. Both of those issues went away when I switched to Rytary which is an extended release version of Sinemet. So, I have zero regrets with starting the meds right away. But that is an intensely personal decision that nobody else can make for you. There are others on this board that do regret starting meds right away, or who delayed meds for years and are thrilled with that decision, and there are others that regret delaying meds.
  11. 1 point
    First take a breath.... Get a good MDS doctor Everyone is different-there are different options. That's why a good movement disorder specialist (MDS) is important. Start exercising if you don't already...there's lots of choices for PD specific programs. Exercise is one of your best tools to fight PD! I do a program called PWR (www.pwr4life.org) & my husband and I take dance lessons. Find something you enjoy doing. Take one day at a time...you will find what works for you. Welcome to the forum! LAD
  12. 1 point
    Hi, Seward -- I must first confess ignorance of playing drum and guitar. Therefore, I cannot offer suggestions on technique. When I am at the piano and experience lack of coordination, when my fingers don't do what my brain is telling them to do, I know my medication is not in full effect. Sometimes I just have to take a break and try later. I know that is not very helpful, but the only other action I take is to try rigidly timed finger exercises and see if I can increase muscular control. Usually that has a positive result, though I never expect perfection. J
  13. 1 point
    George my husband found out he had Parkinson's at age 45, that was 25 years ago. He started taking Sinemet right away and for him it made a great improvement in his life. He knew something was wrong for a couple of years before but because he did not have a tremor he was not diagnosed right away. He still takes a combination of regular Sinemet and Sinemet ER. Lots of complications now but that is to be expected after all these years. Good luck and God bless
  14. 1 point
    Noah, Liquid Sinemet can definitely reduce dyskensia because it is made into a liquid form that is sipped throughout the day as if you were getting a continual supply of levodopa. Somewhat like an infusion. It is primarily used in later stage patients who, when take tablets, have too many issues with off times and side effects. I use it from time to time when I am traveling because it gives me better and more precise control of my symptoms. There are several ways to make it, but the one I make is for convenience because it is not necessary to refrigerate but can be to make it more palatable. Here is the formula: Liquid Sinemet made with Orange Juice: 1) Count the number of Sinemet 25/100 tablets you take in one day. (for use in this example let's say you take 4 tablets per day) 2) Take the number of tablets and multiply it by 100 ml's. (so in this case you would need 4 X 100 ml= 400 ml's) 3) For every 1000 ml's of liquid, in this case orange juice, you will need 2000 mg's of Vitamin C. Orange juice does not have enough Vitamin C to help the ingredients work, but in a pinch if you do not have Vitamin C it is fine not to add it. You will see maximum effects if you do have the Vitamin C to add to the mixture. The amount of Vitamin C needed for this Mixture would be 800 mg's. If you require less than 1000 ml's, all you have to do is to multiple the amount of Orange Juice needed by 2. So, in this case we take 400 ml's and multiply by 2 to come up with 800 mg's of Vitamin C. 4) Crush the 4 tablets of Sinemet. Pharmacies do sell pill pulverizers where you put the tablets in a little cup and then screw on the cap. The cap is cone shaped and will crush the tablets. Make sure it is ground into a fine powder. Make sure you clean the pulverizer after each use. 5) Now you need to add 800 mg's of Vitamin C. You can probably find powdered Vitamin C at a specialty vitamin store (ie. Vitamin Shoppe or GNC), but if there is not one near you your local pharmacy will carry Vitamin C tablets. The best ones to use are the chewable Vitamin C because they are easily crushed. If you cannot find the chewable tablets, make sure you use a regular Vitamin C tablet, not an enteric coated or a delayed release tablet. If you must use the tablets you will find that they come in increments of 250 mg (ie. 250 mg, 500, mg, and then 1000 mg). I recommend that you crush 750 mg (or 1 and 1/2 tablets of the 500 mg) which is close to 800 mg. 6) Place the Sinemet powder and the Vitamin C powder in the 400 ml's of orange juice. This bottle will then contain a 1 day supply of Sinemet. It can either be sipped throughout the day or you can drink 100 ml's four times a day. 7) This solution must be SHAKEN WELL before consuming it. 8 )The convenience of my mixture is that it does not have to be refrigerated but can be is it tastes better to you. 9) Once mixed, this solution is good for up to 48 hours. I hope this helps and please keep me posted.
  15. 1 point
    If I may intervene. Yes the DBS does not need any medication to function and in fact in my first surgery to suppress the tremor, I abandoned all my medication for some weeks. , although my doctor told me to do it gradually. Later to have full control of my body I started taking medication increasing the daily dosage very slowly, until the optimum was reached. In the second one, which is bilateral STN currently I am not taking any dopamine at all. With Pramipexol or Requip llife continues, but of course I have side-effects.
  16. 1 point
    Good for you jb! Please keep us updated because we all care about you and will be thinking of you! LAD - your son is very talented. I enjoyed the video. Marcia-on an earlier post you mentioned job interviews. I forgot how much I hated those interviews until you mentioned them. Dianne- Hope your appointment went well. PF-Did you have a nice time with your grandson? em, Linda, mimilaster and everyone! Be well, be strong and take care of yourselves!
  17. 1 point
    Hi all!!!!!! Not much to say. But just stopping in. Wishing everyone good health. Or as good as we can get. Good luck jb, on the surgery.
  18. 1 point
    I've had dreams like that most of my life. In talking to other people I feel these type dreams are somewhat common. I have had dreams after diagnose of telling other people I have PD
  19. 1 point
    Katrin, you did a fine job with your English.
  20. 1 point
    Hello Mireille, Thank you very much for your opinions and input about my upcoming DBS procedure at Toronto Western Hospital. I have had this Parky disease hanging over me since I was 49. Next year I will be 60. When first diagnosed I was not too worried about it. I thought I was handling it pretty well, I could stop my tremor with my mind, I could pull myself together and walk without showing much dragfoot, My Neurologist had new medicines to put me onto, Mirapex. Requip, Azilect, with Levadopa as a final tool. I was part of a good drug plan to pay for these expensive drugs, research was turning up new ideas for treatment and I felt like I was going to beat this Parkinson's Disease. Besides, there was no time to be sitting around shaking and shuffling around the house. I had too many trails to ride, projects to do, home repairs, trips to enjoy and I always wanted to build a cabin in the woods for my grandboys to overnite in. I was going to retire soon from working as a carpenter and get back into playing softball with the other old guys in town, with hockey to follow in the wintertime. I used to argue online with man who called himself "Net Gypsy" who warned me of the problems of agonists (root word agony:?, see mirapex and requip.), He had experience and knowledge: I had a strong body and self denial. At about age 55, I was still confident in my treatment plan, my personal strength and determination to push through the off times of my medicines. As for DBS, I never considered having that done. But things change. I'm sorry Mireille, I sometimes ramble on without a clear sense of where my conversation is going or when it will end. I admit that I am nervous about having DBS performed on my brain, but I also accept the fact that it has helped other Parky People that I know feel better. It is my hope that DBS will allow me to cut back on volume of drugs I require, have less off time, and more control of my tremor. I understand that DBS won't turn the clock back, but it may slow the decline of my health. It is good to know that where I am going to go for the procedure has an excellent team and reputation, known about by you across the Ocean in France. Once again Mireille, I appreciate you taking the time to Endorse the Toronto Western DBS clinic. It does help my confidence . I will sign off now with 2 of my favourite quotes from members of this forum, Paper Bag Princess, and her defiant "A defiant fist to the sky" and Tremor Girrrrll's observation "Parkinson's Disease is not for Wimps" Thanks again Mireille, and good health to you, jb,49.
  21. 1 point
    Out of curiosity, I used my insurance company's online price checker to see what taking exenatide or nilotinib off-label would cost me. Just to be clear, even if I could afford to, I have NO intention of asking my doctor to prescribe either drug off-label. IF insurance covered it, Byetta (daily injection) would cost $2.50/day. Bydureon (weekly injection) would cost more than $10/day. Until recently, I was taking isradipine off-label (generic DynaCirc, which miracleseeker mentions above) and my insurance covered it with no questions. But isradipine is a cheap generic for a common condition (high blood pressure). For what it's worth, I don't have especially high blood pressure, and had no noticeable side effects from isradipine, but I don't have orthostatic hypotension either. If I did, I doubt my MDS would have prescribed isradipine. Isradipine is in Phase 3 trials for PD, and has been shown safe for PD patients in Phase 1 and 2 trials. But since I don't have Type 2 diabetes or cancer, I'm pretty sure my insurance wouldn't cover exentatide or nilotinib. Cash price for exenatide (either Byetta or Bydureon) would be about $600/month. Maybe doable, if my wife and I made a lot of financial sacrifices. Nilotinib (Tasigna) would be more than $12,000 for a four month supply, taking the lowest dosage studied for PD (150mg/day). Simply not possible. Good news, as I see it: clinical trials for both drugs are moving forward rapidly. Because both drugs are already approved for other conditions, IF (big 'if') either passes Phase 3 trials, they will be available on-label for PD shortly after--perhaps as little as 2-3 years from now. Of course, chances are neither drug will live up to the initial hype--another reason not to jump in w/ off-label use.. Two or three years from now is obviously too late for some, including my dad, who died from PD-related complications in February. But if exenatide really does what it appears to do--not only halt progression, but reverse it--it won't be too late for many more of us, including folks with quite advanced PD. I'm content to wait and see how clinical trials play out. I've checked and I won't qualify for the phase 2 nilotinib trial (my MDS is one of the researchers). I do plan to continue with an upcoming phase 2 trial of the drug testing I'm currently involved in. It's worth noting, the delay getting most promising drugs through clinical trials is difficulty finding enough volunteers for those trials. When possible, I'd rather put my time into that when, rather than trying to get my doctor to prescribe me super expensive, barely-tested drugs off-label.
  22. 1 point
    Wow, where to begin. I have a similar story as those here. My husband is mobile, his dementia is mostly about short term memory, comprehension, and cause and effect. He has Parkinsonism and severe Gasteoparesis as well. Mostly he sleeps, throws up a lot, or dry heaves. I sort of do my own thing too. We eat meals together, I watch movies or do hobby projects whenever I need a creative break. He doesn't watch movies or sports tv anymore. He does read a daily newspaper, and I insist he walk around a store or market once a week just to get him out of the house. He just sleeps. All the time it seems like. He is doing PT for conditioning and lower back pain. We have a lot of specialists, numerous appointments, and it's a lot to keep up with. Like the others, he does PT, rehab, won't do the exercises at home and rinse and repeat! It is exhausting to take him to six weeks of therapy and to see it undone because he sleeps so much. He can't comprehend that he needs to do the exercise and we are back to square one. It is what it is, I am managing very well, for the most part hubby is stable for the moment and that is good news. Take care of yourselves, know that others care.
  23. 1 point
    A great friend sent me this...Enjoy LUNCH WITH AN 85 YEAR OLD > > One day I had lunch with some old friends. Jim, a short, balding golfer type, about 85-years old, came along with them; all in all, it was a pleasant bunch. > > When the menus were presented, my friends and I ordered salads, sandwiches, and soups, except for Jim who said, "A large piece of home-made apple pie, heated please." > > I wasn't sure my ears heard him right, and the others were aghast, When Jim continued, completely unabashed...."along with two large scoops of vanilla ice cream." > > We tried to act quite nonchalant, as if people did this all the time, but when our orders were brought out, I didn't enjoy eating mine. > > I couldn't take my eyes off of Jim as I watched him savoring each bite of his pie a-la-mode. The other guys just grinned in disbelief as they silently ate their lunches. > > The next time I went out to eat, I called Jim and invited him to join me. I lunched on a white meat tuna sandwich, while he ordered a chocolate parfait. Since I was chuckling, he wanted to know if he amused me. > > I answered, "Yes, you certainly do, but you also confuse me. How come you always order such rich desserts, while I feel like I must be sensible in my food choices?" > > He laughed and said "I'm tasting all that is possible for me to taste. > I try to eat the food I need and do the things I should in order to stay healthy, but life's too short, my friend. I hate missing out on something good. This year I realized how old I was. (He grinned) I've never been this old before, so, while I'm still here, I've decided it's time to try all those things that, for years, I've been ignoring." > > He continued, "I haven't smelled all the flowers yet. There are too many trout streams I haven't fished. There's more fudge sundaes to wolf down and kites to be flown overhead. > > "There are too many golf courses I haven't played. I've not laughed at all the jokes. I've missed a lot of sporting events and potato chips and cokes. > > "I want to wade again in water and feel ocean spray on my face. > I want to sit in a country church once more and thank God for His grace. > > "I want peanut butter every day spread on my morning toast. > I want un-timed long distance calls to the one I love the most. > > "I haven't cried at all the movies yet, or walked in the morning rain. > I need to feel wind on my face. I want to be in love again. > > "So, if I choose to have dessert, instead of having dinner, then should I die before night fall, I'd say I died a winner, because I missed out on nothing. I filled my heart's desire. > I had that final piece of pie before my life expired." > > With that, I called the waitress over.. "I've changed my mind, " I said. "I want what he's having, only add some more whipped cream!" > > This is my gift to you - We need an annual Friends Day! If you get this twice, then you have more than one friend. Live well, love much, & laugh often - Be happy and enjoy doing whatever your heart desires. You only go around once on this crazy planet. > > SHARE THIS WITH YOUR FRIENDS including me, if I'm lucky enough to be counted among them. > > Be mindful that happiness isn't based on possessions, power, or prestige, but on relationships with people we like, respect, and enjoy spending time with. Remember that while money talks, ICE CREAM SINGS!