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Showing most liked content since 07/20/2017 in Posts

  1. 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!
  2. 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
  3. 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.
  4. 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
  5. 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.
  6. 3 points
    JDS6958, You need to refrain from commenting on the product you sell and profit from. If anyone else comes on here trying to sell their products, they are banned from the site. Just because you say you have PD does not give you the right to peddle your products that you are profiting from. As for UDCA (TUDCA), We should wait for the results from a real study demonstrating what it does for a person with PD rather anecdotal testimonials from people who may or may not even have PD. Dave
  7. 3 points
    Here's MY worthless opinion.... Parkinson's is on the increase for whatever reasons. Some smart (marketing) people realize this fact, and figure they can financially capitalize on this. All they need is for a lot of people to buy their product for 2 years (which is about the same amount of time for symptoms to progress in a noticeable degree), before symptoms progress and they move in a different direction with their treatment. But 24 months at $100 per month, times lots of people, isn't too bad. Marketing on the internet is REALLY cheap, versus print ads or tv or schmoozing doctors, so the investment is fairly low. Maybe this is just MY naturally suspicious nature at work, but I have my doubts.....
  8. 3 points
    RE: dystonia. Well...as Fred says, PD is never boring...so here is the REST of the story. WARNING: no one heed my previous experience re: gabapentin. I should have known when Diane, the most stable of beings, issued her subtle warning So, I was doing great with gaba. I took 300 mg gaba with each l dopa dose...total 1500 mg gaba a day...well below the max Dr Google stipulates...and within my neuros guidelines. It didn't take but days I was looking forward to the next dose...even to the point of spouting, "Yay, its Gaba time!". I was so relieved from pain, I thought I could compromise my adamant anti drug mantra. Nothing that good could last forever. Very soon I noticed emotional swings, and personality issues. More research showed Gaba is very addictive and can require a difficult withdrawal regimen. Even worse, Gaba can interfere with brain chemicals to cause more irregular l dopa assimillation (as I understand ) and may accelerate Alzheimers..... but not always. "Everyone is different" I've stopped Gaba. Some of you may have seen Dr Okun answer to my question if my muscle spasms are more likely PD or MSA. His cryptic answer was the dystonia I described is not likely PD. I've resumed daily stretching with an exercise ball...even while on our bucket list trip. On a personal note, I drove Big Blue today (our HD trike)..short run to swap vehicles, but included unfamiliar 4 lane traffic, steep hills, trucks and motorhomes. I pulled aside, parked. Called DH. I was beyond capacity. In nearly 50 years never a motorcycle accident. Tonight, as right bicept clenches in tandem with right leg I know it is time to move on. Hmmmm...two wheels to three...now its time for four wheels to touch the ground...sports car?? with an automatic....smile... On a very serious note, I counsel everyone to reconsider their bucket list...whether it is a motorcycle ride or a walk in the park with a loved one....a favorite memory written to a grandchild......if it is worth doing.....your passion or theirs.....It is my hope and prayer each of you has the opportunity and strength to accomplish it...and then...have the wisdom to know when to change...to accept....to grieve.... to move on. NN PS. To forum members who are confused by my divergent posts...from having painful dystonia in two limbs to riding motorcycles, I understand how perplexing it appears. Or how I can write and speak with some coherance, but now am not trusted to get out of a grocery store. Yep, that is the face of PD. That is me.
  9. 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....
  10. 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
  11. 2 points
    This is a good summary that is understandable. https://scienceofparkinsons.com/2017/08/04/exenatide-one-step-closer-to-joblessness/ And this is a word of caution. https://scienceofparkinsons.com/2017/08/08/exenatide-an-editorial/
  12. 2 points
    Stu, It seems to me that many of your problems may be the result of your weight. Diabetes, sleep apnea, high blood pressure all could be the result of the weight. In addition to working on getting your meds correctly adjusted, I would suggest getting on an aggressive weight loss program. Additional medical problems make PD much worse. If losing weight would eliminate some of your medical problems, that might pay significant dividends with your PD. I would suggest talking to your doctor about your weight issue and how it might affect your PD.
  13. 2 points
    JDS, I'm not suggesting you refrain from participating in the forum. Although, I have noticed that the only time you participate is to support and push the products that you sell. I found it interesting that you felt the need to reach out to your testimonials to post on this site to support your product. I've had Parkinson's for several years now. I take only what is prescribed by my doctor. Like your testimonials, my doctor is very pleased with my current state. You would not know that I have Parkinson's if you met me. Sometimes you just have to give the doctors and the medicine prescribed to you some time to settle in. It took over a year to stabilize everything and yes even turn back the clock on some symptoms. Dave
  14. 2 points
    My sons & my hubby are the reason I fight so hard! There's nothing better than hearing "love you mom" from your grown up boys!! One good thing PD had done is brought us all closer. Happy almost Friday!! LAD just saw this....yes...I posted it in two places ...sorry that's upsetting to some 😬
  15. 2 points
    Love that! I'm glad I could be of assistance in your day's work. I posted my enounter on my FB page and found a great opportunity to educate the non PD aware world. Jimmy Choi - the American NInja Warrior with PD posted that he was on a plane and someone asked if his PD was contagious. He said "no" but the lady moved anyway. So, there you go...a great way to get more room on a plane....crazy isn't it? good day to all....keep LADDING:) LAD
  16. 2 points
    Good morning Everyone, Linda, one surely could not argue against the magical goodness of Oatmeal. Especially when it gets backed up with a family who have had so many years of collective good health. Oh, My.. what ages they have attained. That is a family of very good genes!! Thanks for pointing this story. Pathfinder.... , sounds l you faceda challenge. "Can I cut this big lawn" And you did it. Then without warning, jb broke into song, "She fought the Lawn, and She won , She cut the Lawn, She Won. " When the SIL gets back from holiday and sees the great job you did PFer, you may have a permanent job. HI Lorit 2 dozen and nine, Welcome to the club. Always glad to see new posters. And you even understand LAD's post. Hope to hear more from you. LAD, It is so nice that you can enjoy dancing with your husband. and you don't have PD cause you are just gosh darn busy to be bothered with that crap. And too young. Keep up the good work Kid! Hi Dianne, you may have to get some tubing, some good mirrors and look after the machinery yourself. I hope that your pump is working okay for you. Try to stay cumcumber cool for the heat wave. That is likely the same heat wave that is pushing into BC. What a bad fire we have going up there. Hang in there Dianne.! Okay Peace, I will schedule you in as a helper for next summer; cause I sooooo want you to help. It is sorta a fun day despite the heat, dust and heavy lifting. It quickly becomes a community event and as the barB Que fires up at the end of the day; potato salad, tuna salads materialize and a cooler of nice cold beer tops off a good day. And Emma, I have never heard of that fix for wasp bites before either. I hope that trifle turned out nice for you. Have a good day Em ! Well, that took forever to type. But it is an effort that I am willing to make to stay in contact with all you nice people. The sun is shining here, the birds are singing, the dog wants breakfast, the sink is full of dishes, the grass needs cutting (Hey, Ms. PF, now that you cut grass again, you want to come for Tea?). The garden could be weeded again and I should visit my Mom at the Retirement Home and I need to make some muffins and some cookies. And it is a good drying day and I am getting low on socks and und...., well other stuff, he said with a reddening blush. My Grandma used to say that if she didn't attempt to do more than she possibly could, she never would accomplish all she possibly can. It takes me awhile to get going in the morning. It is like firing up a factory in the morning and employees straggle in late: bit by bit. With tight legs and shaky balance i get pills and make coffee. Turn on the news and watch that through slitted eyelids. Finally my hands start to loosen, rigidity relaxes, brain spits and sputters and starts to unravel things, the cramped foot eases off as it realizes I'm going to walk on it anyways, porridge converts to energy and levodopa ignites the lines of communication to 'All Body Parts". GET TO YOUR WORK, DO WHAT YOU ARE SUPPOSED TO DO. The factory is running for another day as dyskinesias have me twisting on my chair. I may just LAD it for the rest of the week. That would be, I'm not old enough for PD and besides, I got too much to get done. Yes, that is the ticket!! I will be LADDING the rest of the week. Good days to everybody. jb
  17. 2 points
    Years ago, a friend and I spent two weeks hiking a stretch of the AT along the Blue Ridge--ended at Buena Vista, VA if I remember right. Beautiful country, but I don't miss the heat and humidity, or the overloaded pack I was carrying. Started doing the ultralight backpacking thing a few years before PD dx. Getting pack weight down was a big help even w/o PD--I expect more benefits as things progress. Sleeping on the ground isn't as easy as it used to be, but a thick insulated air mattress helps. The Pyrenees sound fantastic--my wife and I are hoping for Finland sometime in the near future, and I'd also love to go back to Iceland for an extended stay in the East Fjords. And this summer/fall may finally be the year we climb Mt. Adams (WA State), instead of just talking about it... My MDS is one of the study doctors for the inosine trial: https://clinicaltrials.gov/ct2/show/NCT02642393. Trial uses the dietary supplement inosine to raise blood rate levels. Urate within a certain range is associated w/ slower progression. My urate levels are already too high to qualify for that study (a good thing, I'm told). My understanding is, using inosine needs to be carefully monitored, as urate levels that go too high can cause gout. I was taking isradipine off-label until recently (see signature) and will resume in October. Had already started dopaminergic meds, so didn't qualify for that trial: https://clinicaltrials.gov/ct2/show/NCT02168842 Off-label isradipine use was with MDS guidance and consent. I've had no noticeable side effects, but others have (mostly mild edema). Searching for SURE-PD III (inosine trial) or STEADY-PD (isradipine trial) should be a good way to keep up to date.
  18. 2 points
    Hi PD I gave up paying attention to what others care to say.Often I have heard other parkies relate with the same thoughts so havng PD doesn't always equate that you are different from the normal crowd .Virtues like empathy and understanding come from a lot of self practice I have found that getting involved in making a better world seems to make my PD a very small part of my life. maybe it was a good thing Trump was elected,it shows what being indifferent in our world can cause disastrous results. If he was smart it would be terrible,thank God he,s not lol
  19. 2 points
    As far as the kids go, It was great that the guy was on American Ninja. He didn't do so well, but it showed that we are not helpless, shaky, drooling invalids. Many of us get by for many years with mild to moderate symptoms. Kids get more from seeing something like that than most other things
  20. 2 points
    I posted this twice - sorry if that annoys anyone....feel free to add positive thoughts ponder as we go on this journey.... LAD
  21. 2 points
    Good morning, World. Well, I am up and attem again. I have some of the typical PD symptoms and I Know that I am only months away from being 60. But this first hour of getting moving again is getting more difficult. There, I am ok again. There has been some changes in my Life, and more are coming. Dianne, I am so sorry that they messed up your pump. You have suffered the travails of PD more than most of us could imagine. I sincerely hope that you get that fixed and continue to inspire us with being thankful for little things like a tasty Poppyseed loaf. You don't ask for much. Good for you for finding a Fix. Bless you! Top of the morning to you Linda and Pathfinder. You sound busy Pathfinder. But I am pretty sure that you are happy with the type of busy that you have on the go. Yes, you are. I just looked at your picture and I am pretty sure that I saw your eyes twinkle! Linda, I just realized that you don't use a forum name. Which is fine, but if you wanted one, we could likely come up with one. Hi, Em, that is so nice that you continue to keep up with your Dutch relatives. That is nice that you got away for a little holiday with your son Sean. Is he going to do more school or is he looking for employment now? Ah, to be a young man and holding the world by its tail. So great that you have him to help you out Em. Take care. LAD-Y, It is good that you push yourself physically and with 3 sons and a husband, and parents, your days must active and full. I saw an interesting thing on FB yesterday. It was a sketch of an iceberg with the upper part which was above the water labelled "What you see" and contained the heading "Tremours". The lower part was labelled as "What you don't see" and it showed the massive part of the iceberg,below the water and contained headings such as bladder control, dyskinesia, bradykinesia, dystonia, swallowing issues, constipation, anxiety, fine motor control, I probably should just go back and find that link cause I am sure that I screwed it up. Oh well, the day is still young, I'm sure I will screw up more things before the day is over. HAVE GOOD DAYS EVERYONE. jb PS. I can get mixed up with names sometimes, but I know that we are missing Patricia. Hello. How are you, you, you, you and his voice echoed up and down the Eastern Seaboard. r.
  22. 2 points
  23. 2 points
    Give credit to the turtle! But I agree with him! And you are spot on...choose to be happy! My son was amazed at my neuro evaluation-my DR uses the UPDRS. My "score " was the same as last year so I'm holding steady! I made an iMovie of our dance moves and my DR loved it especially since he was the DR who suggested dance lessons. I'll post it sometime. But I was a very proud mama - my DR talked to me and Adam. He was as he says "adulting" Happy Friday!!! LAD
  24. 2 points
    It is good that you are trying to understand and help him. I just used my examples to hopefully help. No need to apologize. There are lots of options and help available. That is the good part. Have you called NPF? They helped us understand a few things... for free. I recommend calling together. I am sorry to hear of your struggles. PD can affect many things. Since he is a pilot, I suggest having a plan to figure out what is next when it is adversely affecting his job. I know pilots hate to be grounded, but PD has a way of forcing us to make new plans. I hope things go well.
  25. 2 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
  26. 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
  27. 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!
  28. 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
  29. 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
  30. 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
  31. 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
  32. 1 point
    Good morning Parkys. Morning Linda and LAD, I'm glad everyone finds a place somewhere on this forum. I often wonder what happened to some who were regular posters that aren't here anymore. Where did they go? 10 years ago LAD I went to the doctors cause my right hand was not behaving as a right hand should. I had no idea what a fork in the road I had arrived at... LAD I forgot to thank you for reposting the iceberg of parkinsons and what is visible. And the province of Quebec is pretty. Quebec City is very French, and the old buildings are beautiful. It is one of the oldest European Cities in North America. Linda, I never knew as much about the Civic Holiday as you just taught me. I never heard of Simcoe Day before. Thank you! I do know that Simcoe was a Governor of Upper Canada a long time ago in the 18 hundreds. Hi Em, how are you. You could likely start a flash mob with your singing couldn't you. That would be good! Get Lucy to help you out perhaps. My Mom is 88. She loves the cottage, but the cottage with rocky stairways, slopes 2 stories and an outhouse is not so friendly to people with mobility issues. She has diabetes, uses a walker, is clear in the mind and well loved and respected by many. She has spent many great weekends at the cottage that she helped build with Dad. I remember I was 17 when we built a sleeping Cabin on the property that they bought. The cottage is now owned by my brother and sister. That arrangement has worked well for the last 10 years or so. I'm glad that you have good cottage memories too Linda Tomorrow is Friday again. Who doesn't love a Friday? Be safe, be strong, jb
  33. 1 point
    3 years ago today I was getting a pre surgery nerve test done when the dr conducting the test said "I think you have PD" ... what a journey this has become...I'm glad I found this forum and this thread along the way! LAD
  34. 1 point
  35. 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.
  36. 1 point
    Stump, off topic, brief personal note. DH always wanted to hunt moose. Instead he spent most of his hunting days helping his father. We r on our "bucket list" trip revisiting our favorite places. In Idaho, DH met a great outdoor guide who will provide guide service, meals and lodging in a cabin on his property. DH will hunt am for moose, pm for deer for a very reasonable price. Again, we are reminded to take time to enjoy along the way. This is a unique chance for DH to realize an experience he thought was not possible. Had we not made the effort to get out in the world again, this would not have happened. You are a great example of maximizing time....an inspiration to many. I encourage you to post often and share the diverse aspects of your life. It says a lot about you when you are subject to sea sickness, yet pursue your passion for fishing. Hmmmm, a great analogy for living with PD, ya think? Good luck with the " Urpies." 👍 NN
  37. 1 point
    Well, it's hard to realize that September is almost right around the corner. I hope this month goes by fast for you. We all love you and are pulling for you, DIanne. Am praying for you right now, as I'm sure many others are also doing, and the Lord continues to watch over you with love every second of every day. Linda
  38. 1 point
    We are all busy people but we all try and take time out to help and give opinions when we can. You have a lot of knowledge and you do extensive research on this disease. We can really learn from what you know but if you can do so without selling your products then it's a win win for us all. However if you feel you have better use of your time then we understand.
  39. 1 point
    Yes, I know and I wish you and your mom only the best. However, here is where you are not correct. It does not matter how much or what medications I take nor the degree of PD symptoms I have. In fact, the amount of my PD's progression is also of no concern. What matters is that almost immediately after starting UDCA my PD symptoms almost evaporated and remained that way for nearly 4 years without any change in medications. Now, some tremor has returned but it is nothing significant like my pre-UDCA tremors. So I am still on UDCA and I intend to continue its use well into the foreseeable future. One thing is certain and that is UDCA has caused me no harm. Fred
  40. 1 point
    According to my MDS, the only anti nausea med that we as parkies can safely take is Tigan.......... and yes, it works wonderfully.........
  41. 1 point
    no worries LAD, as I found it to be quite lovely.........
  42. 1 point
    %^^&*. Yeah okay. Argue just to argue..... If referring to Rasagaline as "generic Azilect" is good enough for Dr Okun, My MDS, and my Pharmacist, it's good enough for me. Surprisingly, the world is not awaiting approval from Mr. Fritz.
  43. 1 point
    https://www.drweil.com/blog/bulletins/tai-chi-best-bet-to-help-prevent-falls/?utm_medium=email&utm_campaign=Weekly Bulletin 8032017&utm_content=Weekly Bulletin 8032017+CID_4ea19f1610ca4deac4864b9b3f474e78&utm_source=CM Email&utm_term=Tai Chi Benefits Andrew Weil, M.D. Tai Chi: Best Bet To Help Prevent Falls Tai chi is a gentle form of exercise that can help develop strength, balance and flexibility. In fact, practicing this traditional Chinese “shadow boxing” appears to work better than other types of exercise to reduce the number of falls among seniors and others at high risk of falling. A team of Spanish investigators compiled the results of 10 randomized controlled trials that compared the effects of tai chi, physical therapy and low intensity exercise as well as other approaches aimed at preventing falls. The researchers found what they described as “high-quality evidence” that tai chi reduced the rate of falls by 43 percent compared with other interventions at short-term follow up (less than 12 months) and by 13 percent over periods longer than 12 months. They also found evidence that tai chi reduced the risk of injurious falls by 50 percent over the short term and by 28 percent over the long term. However, because there have been so few studies of tai chi among seniors and others at risk of falling, the Spanish team concluded that more research is needed to determine how effective this practice is at lowering the risk of harmful falls in this demographic. My take? I view tai chi as an effective form of mental and physical stimulation, and very beneficial for overall health. Like yoga, tai chi is a reliable method of stress reduction and relaxation, and it promotes flexibility, balance, and good body awareness. It is pleasing to watch and perform, and as this study suggests, it may be the best type of exercise to reduce the risk of injury from falls among seniors.
  44. 1 point
    The same can be said about the people who think they show improvements from taking this. They also can be on other medications/supplements that are making them feel better. I'm not dismissing this supplement but I just think people should not join the band wagon and or trick their brains into thinking it works because it's suppose to work based on other's testimony. $100 a bottle is nothing to sneeze at. People are desperate to find relief. Unless there is a money back guarantee for this purchase I don't think it's something I would consider for my mom.
  45. 1 point
    Yes, very much this. DW and I recently embarked on an exercise/weight loss routine. Right now I'm working on fitness more than weight loss (working up on duration on a stationary bike - currently at 40mins 4x per week, stepping up to 50 minutes next week), though some weight loss is coming along for the ride. I have an interview on Wednesday for a supervisor position at my current place of work, and after that I will probably try going low carb to enhance weight loss. If you go really low carb and go into ketosis you can get some bad breath and body odor issues, and I really don't want that during an interview. Interesting aside - DW said that people on levodopa therapy can't use the urine ketosis test strips as the meds cause a false reading (not sure if false positive or negative). Anyway, I do notice on the days that I ride that even if I'm late with my meds my symptoms are less apparent than on days I don't ride. So that is a real, and clear benefit. If I can manage to stick with the exercise I will probably experiment with reducing my meds to see if that is viable. Fewer pills is always a good thing if you can tolerate it.
  46. 1 point
    Welcome Hiker to the club no one "wanted" to join; but now that we've been involuntarily inducted we're glad it exists. Since exercise is the only "treatment" proven to slow the progression of PD, you are clearly on the right path to keeping it in "slow motion" (no pun intended). Keep up all the activities you currently enjoy and as LAD wisely points out add in neuroplasticity activities and maybe even some speech strengthening work - I've read that singing is excellent, however I clearly could only do this in the shower when no one else was home - I cannot generate music as much as I appreciate it . As you will find from the wonderful contributors on this forum, oxymoronically, we are all the same in that our journeys are all unique. The progression of your PD may indeed follow parts of "common paths" as listed in all the literature you can find (I think the pamphlets that NPF will be happy to mail you are a good start if you haven't already read them), but no one will be able to tell you on exactly what course your PD will progress. As far as starting medications, these only treat symptoms. There are some Neurologists that still feel Rasagiline (brand name - Azliect) may have some neuroprotection qualities - but that's not been scientifically proven and starting it is a personal decision only you can make. There are as many folks that are "for" it as "against" it - which is true with most approved medications. "One size fits one" is how I look at it. Moreover, with any plan of action (including inaction) you will best know what works for you by how your symptoms respond, pay attention to the non-motor symptoms as well; however you may not have realized these were PD related (if they in fact are) - that's what DH (my dear husband) and I found. Try to find an MDS that will help you craft a path of action that serves your purpose. Beware, finding and getting in to see an MDS will probably take months (took us 7 months and now we're having to find another which is also taking months, but we try to remind ourselves of the adage - patience [and persistence] is a virtue. Mind you, I always said "if I wanted to have [patients], I would have been a doctor" - works better orally than in writing - ). There is a serious scarcity of MDS specialists compared to the increasing number of humans diagnosed with movement disorders, nonetheless having this specialist as one of your trusted advisors is worth the work & wait. As I have quoted in other posts, I am a huge fan of Atul Gawande's book Being Mortal. I encourage you to ask and answer the following questions in your ever-evolving journey with how you manage PD as part of your new reality. Lastly, as far as when to go hiking in Spain, my "advice" is do it as soon AND as often as you want to and can. Why not go now AND in 5 years? I assure you the hike will be different each time but not because of PD, because it's something you want to do and will appreciate forever. Doing the things that fill our lives with joyful purpose and appreciating all the things in life we can seems to me to be a wise philosophy by which to live. Again, as LAD wisely stated, you have PD it doesn't have you. Best of luck with your continued journey, I look forward to sharing with you. LHG
  47. 1 point
    Decided to blog my journey with DBS, if anyone wants to follow along. Scottsuf.blogspot.com
  48. 1 point
    Add PWR! Moves to the list. Has been life-changing for my husband! http://www.pwr4life.org/
  49. 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!
  50. 1 point
    Other than maybe right after getting home from the hosp., I don't think I'll need someone home with me 24/7. Liz and Suzanne will both be there for surgery, and when I'm in the hosp., and will make sure I'm well taken care of after...... As to this happening "so quickly"? This is a path that started back in August, that is now coming down to the finish line.............