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  2. To NN: Don't worry about going off-topic. All of your input is valuable and it seems everyone has your respect on this board. And I've added a signature just for you
  3. Today
  4. My pleasure.
  5. That type of tingling is often arthritis in the back or a slipped disk. There are many causes and Parkinson would be down the list of possibilities based on your description.
  6. I have to agree guys...try feeling more positive as we all know negativity is not good..depression can kick in. just started a mindfulness / exercise course so far so good. take care em
  7. so true.so true.Our thoughts are what we are. Ive also found great help with doing good things like visiting others worse off. My PD has advanced somewhat but very little Hope your also. best john
  8. http://www.health.harvard.edu/staying-healthy/the-health-benefits-of-tai-chi The health benefits of tai chi This gentle form of exercise can help maintain strength, flexibility, and balance, and could be the perfect activity for the rest of your life. Updated: December 4, 2015Published: May, 2009 Tai chi is often described as "meditation in motion," but it might well be called "medication in motion." There is growing evidence that this mind-body practice, which originated in China as a martial art, has value in treating or preventing many health problems. And you can get started even if you aren't in top shape or the best of health. In this low-impact, slow-motion exercise, you go without pausing through a series of motions named for animal actions — for example, "white crane spreads its wings" — or martial arts moves, such as "box both ears." As you move, you breathe deeply and naturally, focusing your attention — as in some kinds of meditation — on your bodily sensations. Tai chi differs from other types of exercise in several respects. The movements are usually circular and never forced, the muscles are relaxed rather than tensed, the joints are not fully extended or bent, and connective tissues are not stretched. Tai chi can be easily adapted for anyone, from the most fit to people confined to wheelchairs or recovering from surgery. Tai chi movement A tai chi class practices a short form at the Tree of Life Tai Chi Center in Watertown, Mass. "A growing body of carefully conducted research is building a compelling case for tai chi as an adjunct to standard medical treatment for the prevention and rehabilitation of many conditions commonly associated with age," says Peter M. Wayne, assistant professor of medicine at Harvard Medical School and director of the Tai Chi and Mind-Body Research Program at Harvard Medical School's Osher Research Center. An adjunct therapy is one that's used together with primary medical treatments, either to address a disease itself or its primary symptoms, or, more generally, to improve a patient's functioning and quality of life. Belief systems You don't need to subscribe to or learn much about tai chi's roots in Chinese philosophy to enjoy its health benefits, but these concepts can help make sense of its approach: Qi — an energy force thought to flow through the body; tai chi is said to unblock and encourage the proper flow of qi. Yin and yang — opposing elements thought to make up the universe that need to be kept in harmony. Tai chi is said to promote this balance. Tai chi in motion A tai chi class might include these parts: Warm-up. Easy motions, such as shoulder circles, turning the head from side to side, or rocking back and forth, help you to loosen your muscles and joints and focus on your breath and body. Instruction and practice of tai chi forms. Short forms — forms are sets of movements — may include a dozen or fewer movements; long forms may include hundreds. Different styles require smaller or larger movements. A short form with smaller, slower movements is usually recommended at the beginning, especially if you're older or not in good condition. Qigong (or chi kung). Translated as "breath work" or "energy work," this consists of a few minutes of gentle breathing sometimes combined with movement. The idea is to help relax the mind and mobilize the body's energy. Qigong may be practiced standing, sitting, or lying down. Getting started The benefits of tai chi are generally greatest if you begin before you develop a chronic illness or functional limitations. Tai chi is very safe, and no fancy equipment is needed, so it's easy to get started. Here's some advice for doing so: Don't be intimidated by the language. Names like Yang, Wu, and Cheng are given to various branches of tai chi, in honor of people who devised the sets of movements called forms. Certain programs emphasize the martial arts aspect of tai chi rather than its potential for healing and stress reduction. In some forms, you learn long sequences of movements, while others involve shorter series and more focus on breathing and meditation. The name is less important than finding an approach that matches your interests and needs. Check with your doctor . If you have a limiting musculoskeletal problem or medical condition — or if you take medications that can make you dizzy or lightheaded — check with your doctor before starting tai chi. Given its excellent safety record, chances are that you'll be encouraged to try it. Consider observing and taking a class. Taking a class may be the best way to learn tai chi. Seeing a teacher in action, getting feedback, and experiencing the camaraderie of a group are all pluses. Most teachers will let you observe the class first to see if you feel comfortable with the approach and atmosphere. Instruction can be individualized. Ask about classes at your local Y, senior center, or community education center. The Arthritis Foundation (www.arthritis.org; 800-283-7800, toll-free) can tell you whether its tai chi program, a 12-movement, easy-to-learn sequence, is offered in your area. If you'd rather learn at home, you can buy or rent videos geared to your interests and fitness needs (see "Selected resources"). Although there are some excellent tai chi books, it can be difficult to appreciate the flow of movements from still photos or illustrations. Talk to the instructor. There's no standard training or licensing for tai chi instructors, so you'll need to rely on recommendations from friends or clinicians and, of course, your own judgment. Look for an experienced teacher who will accommodate individual health concerns or levels of coordination and fitness. Dress comfortably. Choose loose-fitting clothes that don't restrict your range of motion. You can practice barefoot or in lightweight, comfortable, and flexible shoes. Tai chi shoes are available, but ones you find in your closet will probably work fine. You'll need shoes that won't slip and can provide enough support to help you balance, but have soles thin enough to allow you to feel the ground. Running shoes, designed to propel you forward, are usually unsuitable. Gauge your progress. Most beginning programs and tai chi interventions tested in medical research last at least 12 weeks, with instruction once or twice a week and practice at home. By the end of that time, you should know whether you enjoy tai chi, and you may already notice positive physical and psychological changes. No pain, big gains Although tai chi is slow and gentle and doesn't leave you breathless, it addresses the key components of fitness — muscle strength, flexibility, balance, and, to a lesser degree, aerobic conditioning. Here's some of the evidence: Muscle strength. Tai chi can improve both lower-body strength and upper-body strength. When practiced regularly, tai chi can be comparable to resistance training and brisk walking. "Although you aren't working with weights or resistance bands, the unsupported arm exercise involved in tai chi strengthens your upper body," says internist Dr. Gloria Yeh, an assistant professor at Harvard Medical School. "Tai chi strengthens both the lower and upper extremities and also the core muscles of the back and abdomen." Flexibility. Tai chi can boost upper- and lower-body flexibility as well as strength. Balance. Tai chi improves balance and, according to some studies, reduces falls. Proprioception — the ability to sense the position of one's body in space — declines with age. Tai chi helps train this sense, which is a function of sensory neurons in the inner ear and stretch receptors in the muscles and ligaments. Tai chi also improves muscle strength and flexibility, which makes it easier to recover from a stumble. Fear of falling can make you more likely to fall; some studies have found that tai chi training helps reduce that fear. Aerobic conditioning. Depending on the speed and size of the movements, tai chi can provide some aerobic benefits. If your clinician advises a more intense cardio workout with a higher heart rate than tai chi can offer, you may need something more aerobic as well.
  9. Do you also get exercise doing Tai Chi? My PT and Neuro are big into balance and vigorous exercise. I current ride a exercise bike in morning in front of financial news for about 30 minutes and also take a couple of long walks with my dog. My balance and eyesight are bothered by both the Parkinson stuff and the cognitive end of Dementia with Lewy Bodies, so there isn't a lot more I can do, but Tai Chi seems like something good I can also do with my wife so we will have something to do together.
  10. I can offer one more recommendation for studying tai chi. This is my sixth year, and I have moved into the advanced class, where I am now learning the 103-movement form. Prior to this I learned and practiced for several years the basic 24-movement form. I am the only pwp in my class of 16 people. Sometimes I have a day of poor balance. But for the most part I can do everything the others can do. As others have said here, tai chi is beneficial to body and mind or spirit. Although it is exercise, it is relaxing as well. Best wishes, J
  11. I have read in many places that MSA and PD + will initially show an abnormal DATSCAN, however definitive diagnosis of MSA & Pd+ may take years to confirm after initial diagnosis of Parkinsonism from DATSCAN (as Adam's MDS stated.) This does not sound like what your MDS is telling you NN..........? Sounds like he is saying people that eventually get dx'd with MSA have had "normal" DATSCANS....... Now, I'm confused........
  12. The vote in the house is schueled for tomorrow to celebrate the anniversary of the original AHA seven years ago.On a good note many republicans are speaking out against the bill Most say there is a lot more work to be done so no one needlessly goes without care.So if you haven't called your congressman please do. john Im sure you all heard that the ACa bill was repealed.That was a good thing for many people.Now there is work to be done to improve the old bill. My feeling is healthcare is far to costly for what it should be and maybe price controls wouldnt be a good place to start. Thanks for all you did their part in this effort.
  13. Luke Just for discussion sake...and not to allude to any of your possible diagnoses...Both DH and I have had many system disorders..even some with surgeries..that now can be termed non motor symptoms of PD. All pieces are fitting snugly into a puzzle that has been with us for decades. Your wise dr noticed your history of autonomic dysfunction. You're fortunate to hv an astute dr. After reading your story, I for sure would get PetScan. Note end of quote I posted, that excessive ldopa can accelerate MSA. hmmm. After 3 yrs of dx, I take 50/200 CR 5x's a day. I "break out" 1 to 2 hours after each dosage. I didnt tell dr, cuz I don't want to increase.. Treatment choices might have been different. Alternative treatments like stem cell tx may be more successful in a different part of the brain....which I will ask neuro when I see him. This discussion should not ignite PWP to fear a PD subset or a different dx. We are speaking of SIGNIFICANT non motor autonomic conditions coupled with PD. This is EXTREMELY rare. DH and I have pre PD rare conditions. AND DH is 72..I soon will be 70. Much more likely to have different conditions. Luke, I wish you well...would like to know more about you..and we all appreciate signature lines that state short histories and meds. Pls keep us informed. Apologies if I took yr thread off topic. NN
  14. Yesterday
  15. BTW, swamper...you are right...I thought we had PD just up to a few weeks ago. So I was on the side that DaT scans were not always correct. I am kinda confused now, because PWP with negative scans are numerous...and it would be unusual for them all to have MSA or PD+. As I said earlier...epilepsy at one time was dx of numerous seizure disorders that now can be categorized. Mental illness is now a term for many dimensions. .With research, maybe PD will have additional subsets... which leads us to more definitive avenues for a cure. 😊👍 Hugs to u, Swamper. NN
  16. Hi Luke, My Neuro is suggesting both DH and I may have MSA. Which is rare beyond rare. No Pet scans. However, Dr Google refers to them often so your dr may be on track. I am not a medical professional.. From what I've read, MSA and PD + originate from a different part of the brain than PD with a different process for diminishing l dopa . The fact your dr mentioned it suggests he knows about MSA...pet scans are not commonly ordered. Also, you must present with enough clincal signs for him to suggest it. I've read where brain changes can be noted in pet scans not seen with DaT . it may be an advantage for treatment choices. It will be interesting to know. If u can afford it...if it were me...because there is a lot of difference between MSA and PD...I would want to know. perhaps this info may interest you: from National MSA website "Levodopa may also cause new movement disorders, known as dyskinesias, to appear and has been associated with a lower benefit-to-side effect ratio in MSA compared to Parkinson’s disease3. A comparison study of certain brain wave patterns of Parkinson’s and MSA patients’ response to levodopa showed that MSA patients’ on levodopa displayed a level of function similar to that of unmedicated Parkinson’s disease patients2. In practice, response of MSA patients to levodopa varies widely from patient to patient, leading some experts contend that the actual percentage of patients who benefit from levodopa therapy may be close to 40 to 60 percent among MSA-P patients, with some studies reporting as high as 69 percent, as opposed to the more widely-held belief that most MSA patients are not helped by levodopa therapy4. Levodopa’s usefulness in Parkinsonism is limited due to the fact that the drug’s effectiveness diminishes over time, with each dose gradually lasting a shorter duration5. As a result, symptoms begin to return between doses and, in some patients, dyskinesias appear, usually in the face, neck or limbs. In MSA the decreasing effectiveness of levodopa is compounded by loss of the cells that respond to dopamine as the disease progresses. As a result, benefits of levodopa generally wane after two to three years in most MSA patients compared to five or more years in Parkinson’s disease patients5. High doses of levodopa are also thought to contribute to the disease process in MSA, though at least one preliminary study has found this to be untrue ". Thoughts and prayers to you and your family. NN
  17. Many thanks, Dr. Okun
  18. I have this also. It doesn't hurt or bother me but it is a curiosity!
  19. jb - What you said about the past, is exactly how I feel about my childhood. Spot on.
  20. Very informative, thank you. Just curious if you or your husband has ever had a PetScan? My MDS brought this up as an option, but I have so far declined. Can only pay so much in medical costs. It will supposedly help in the diagnosis of Parkinsons Plus diseases...
  21. Hi Emily , It is a nice surprise to see your name up on the forum again. How are things for you.? Hello Dianne, I hope that you are getting through your days okay. I keep your journey in my thoughts. Ella, as I get older, I like to recall my younger years. Not that I dwell in the past, but I did have a wonderful childhood. I didn't truly appreciate it until I was older. Papa57, Goodwork with the maple syrup. I am sure that your gifts are appreciated. It is a lot of work eh? Marcia, happy springtime to you. That could be a good movie. " Happy Marcia's Springtime Adventures." Good days to everyone, jb
  22. Scientific discovery may change treatment of Parkinson Date: March 22, 2017 Source: Turun yliopisto (University of Turku) Summary: When monitoring Parkinson's disease, SPECT imaging of the brain is used for acquiring information on the dopamine activity. A new study shows that the dopamine activity observed in SPECT imaging does not reflect the number of dopamine neurons in the substantia nigra, as previously assumed. full article https://www.sciencedaily.com/releases/2017/03/170322094512.htm Mapping the future of precision medicine in Parkinson's disease Date: March 22, 2017 Source: University of Cincinnati Academic Health Center Summary: A new transformative approach to defining, studying and treating Parkinson's disease has been revealed by investigators. Rather than approaching Parkinson's disease as a single entity, the international cadre of researchers advocates targeting therapies to distinct 'nodes or clusters' of patients based on specific symptoms or molecular features of their disease. full https://www.sciencedaily.com/releases/2017/03/170322143129.htm
  23. Hi jb..yes i remember Bill ..what a good friend and yes again jb a wonderful man..em45
  24. Thank you and feel free to ask any followup questions.
  25. At this moment we are not recommending replacement of another MAO-B inhibitor that may be working fine. It will take some time to sort out how we may use this drug in the Parkinson cocktail.
  26. Would you recommend, on an individual basis, replacing Azilect by Xadago for a trial period, to ascertain that it is not doing better than Azilect, or do you consider it's not worth the trouble and could even disrupt the subtle balance of meds that is sometimes so difficult to reach for longtimers
  27. After a while the slow, deliberate movement and focus becomes your normal approach to your environmemnt.
  28. Yes, I go to a special “health recovery” program geared to PD, etc., but starting next month I’ll start a regular one as well. For the longest time I was the only student, with a 70 year old woman teacher who has had PD for awhile, and the rare beginner that would only last 2 or 3 lessons. For the last year I’ve had two regulars. One uses a walker or walks precariously on his tiptoes until he “gently “ falls..... ( I say he’s just practising his break- dancing) The other uses a wheel chair and moves stiffly. Both have made noticeable improvements. The support between us helps too, much of it intuitive. Either class would be an excellent activity for both of you together., and your wife would learn how to help you exercise. If you have any questions feel free....
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