Sunday 18 March 2012

Reprogramming Skin Cells-Mental Disorders-Brain Cells

By reprogramming skin cells into brain cells, scientists gain new insights into mental disorders

By reprogramming skin cells from patients with mental disorders, scientists are creating brain cells that are now providing extraordinary insights into afflictions like schizophrenia and Parkinson's disease. read more..

Sunday 4 March 2012

Clinical Research Learning Institute-World Parkinson Congress-Yoga Teacher Training

WPC Posters: CRLI Grads Present

Today kicked off the not only the 2nd World Parkinson Congress (WPC) program - e.g., presentations about the latest Parkinson’s research and care - but also the scientific and lay poster sessions.Most scientific meetings include posters by scientists, which summarize their most recent experiments. The WPC is unique because, alongside the scientific display, it features “Living with PD” posters. These posters display efforts undertaken by people with Parkinson’s disease, care partners and voluntary organizations around the world to further the cause. PDF is proud to report that two of its Clinical Research Learning Institute graduates (who also serve as WPC reporters) presented posters about their work in the community. Today, they stood by their posters discussing their work with people from all over the world. They both chatted with us briefly during this time. Here’s a synopsis:ReneeRenee LeVerrierYoga Teacher Training for Students with Parkinson’s Disease (LeVerrier, R.; Rork DeAngelis, T; Thomas, CA (United States))About Renee's Poster: As Renee says, "Yoga is becoming increasingly popular among all people, and people with Parkinson’s. For me, the focus is on making sure that yoga teachers know how to work with people with Parkinson’s, because it is different." She and her co-authors identified a need in the Parkinson's community for yoga instructors knowledgeable in disease who could tailor their teaching to its special needs. In this vein, Renee created a collaborative model for health care professionals to teach yoga instructors about Parkinson's. She has already conducted two workshops and 40 instructors have been trained.DianeDiane G. CookAddressing the Needs of Newly Diagnosed PD Patients: Development of a Model Curriculum (Cook, DG; Vierck, E (United States))About Diane's Poster: Diane's poster discusses strategies that she has used to address the needs of people newly diagnosed with PD. She has done this within her own support group, using surveys to monitor what information people are looking for and planning a formal curriculum accordingly. Several of her leading topics include nonmotor symptoms of PD. She hopes to make this curriculum a prototype that others could use. Diane says of her experience today,“My experience in presenting is that much of the value of the conference takes place in the discussions held in front of our posters and in the booths, where common experiences are shared and cards are exchanged to continue the dialogue. There is a fierce sense of collaboration!”Congratulations to Renee and Diane. We'll update you tomorrow on other CRLI presenters. read more..

Clinical Research Learning Institute-2Nd World Parkinson Congress-Parkinson's Disease

WPC Haiku from Renee

As we kick off the first full day of sessions of the 2nd World Parkinson Congress, we'd like to share (a bit belatedly so) a lovely Haiku emailed to us yesterday by Renee LeVerrier, as she waited for the opening ceremonies to beginPre-Congress HaikuCloudy sky, Glasgow fogCannot dampen spirits orClarity we seekRenee is one of our WPC reporters and a graduate of PDF's Clinical Research Learning Institute. Later today, Renee is presenting a poster entitled, "Yoga Teacher Training for Students with Parkinson's Disease." Learn More:If you'd like to learn more about Renee and our other WPC reporters: Read their bios here If you're interested in other creative works by people living with Parkinson'sSee PDF's Creativity and Parkinson's site Browse the Sharing Stories project read more..

Saturday 3 March 2012

Parkinson's Disease-Centrifugal Force-Pj

Parkinson's, PJ and the Fair

It was not the Parkinson’s disease that caused the reaction.  Crotchety as it may sound, I just dislike county fairs. How many groomed Holsteins, decked out Morgan work horses and suckling pigs does one need to see?  How much gut-churning, barely edible, sugar-coated, deep fried lard must one ingest?  How many rip-off hawkers selling magic mops and labour-saving vegetable slicer/dicer contraptions do you need? Who really believes it is a test of a man's skill (females know better) to plunk down a succession of $5 bills to play some rigged, balloon-popping, mole-whacking or bottle-toppling game in order to "win" a too-big-to-carry-around plush toy ego trophy.  And who really needs to risk 35 seconds on a life-threatening midway ride with a name like "Corkscrew", employing excessive centrifugal force, bone-jarring lurches, and supersonic speed, all controlled by some elementary school drop-out who thinks it's funny when thrill-seekers jettison their cargo of over-priced cotton candy and grease-impregnated onion rings (as beneficial as that gastronomic purge may be)?  No, if I never have to attend another wallet-emptying, crowded, tired and tawdry fair again that would suit me just fine. So what possible mental delusion motivated me to attend the 2011 Pacific National Exhibition, the largest fair in Western Canada?  Was it knife-wielding "carnies"?   Demonic-possession? Dopamine agonist-induced obsessive/compulsive behaviour? Or was premature dementia at work erasing those carnival-caused scars of my past?  No, it was the totally illogical, impulsive and illusory idea of a grandpa who had his grandson to himself for the day. Who would be better to introduce the lad to the garish and gawdy underbelly of entertainment?If deep down I was hoping to cure 2 1/2 year old PJ of any desire to ever go to another fair, I was hopelessly na├»ve.   He loved it!  Starting with the livestock barns he was soon spinning, sprinting, dodging and weaving past stalls of prize heifers, coiffed sheep and sleek stallions. Next were the domesticated fowl exhibits. With the attention span of a squirrel with amnesia seeking out a misplaced stash of seeds, PJ squeezed shamelessly to the front of every crowd to catch a glimpse of some blue ribbon ducks, dozing pigeons or exotic hens. In a matter of less than 30 minutes our frenetic farm animal tour had exhausted me. Breaking out of the barns into the late afternoon sunshine we joined the human river in pursuit of alleged amusement. I had no appetite for dashing through the next building with its display of 4H handicrafts.  It became obvious that neither did my whirling Dervish of a grandson.  His eyes, staring almost straight up, were locked on the top of the Ferris Wheel. "That one, Grandpa, let's go on that one."  Pulling my hand with the power of a small tractor he strained through the crowd with determination. The concept of lining up to buy tickets for anything was a real test of his patience, but especially when the actual process inexplicably required waiting in three line-ups: one to pay for PJ's ride pass voucher, one to get his hand stamped as evidence of payment and one to actually get on any ride. At each end of each queue he voiced an indignant complaint as if he and his entourage of one should immediately be ushered to the front like recognizable royalty. After all, we were wasting precious time shuffling along when we could be racing from ride to ride. Of course there was a minimum height requirement that, thankfully, restricted access to most of the tummy-testing rides. I say "most" because the first ride for which we were eligible was the "Scrambler" where three benches whirled horizontally counter-clockwise while the whole machine spun clockwise on its axle.  Vaguely recalling the ride as being in the relatively tame category I succumbed to PJ's plaintiff refrain, "This one, Grandpa!"It was different than I remember. Faster and with a force that felt like it would hurl u read more..

Essay On The Shaking Palsy-Movement Disorder-Medical Scientist-James Parkinson

James Parkinson's Legacy

Next Monday, April 11, we will be observing the 256th anniversary of the birth of James Parkinson, the English scientist whose masterpiece of medical observation – An Essay on the Shaking Palsy, published in 1817 – defined the condition that we know today as Parkinson’s disease.What do we know about this man? Why was he so important? Well, first off, free yourself of any image you may have of James Parkinson as a medical scientist who spent his whole career studying movement disorders. He was actually one of those Renaissance men and women who roamed England and Western Europe during the period we call the Enlightenment, and who seemed to have inexhaustible appetites for knowledge of many kinds. He was a surgeon, an apothecary, a geologist, a paleontologist and a political activist in the Radical movement. In fact, about the only thing he wasn’t was a physician! A couple of weeks ago, I had the pleasure of attending a talk on the subject of Mr. Parkinson given by Gerald Stern, M.D., a well-known Parkinson’s scientist from London. Remarkably, Dr. Stern told us, his subject died virtually unknown in 1824, and wasn’t rediscovered until some more than six decades later, when Jean Martin Charcot, the brilliant French physician who is considered the founder of modern neurology, renamed the disease (then known as Paralysis Agitans) for the man who had first written about it. And Parkinson’s disease it has been ever since. Indeed, if Mr. Parkinson was known for anything during his lifetime, it wasn’t so much for his medical observations but for his interesting early work on the emerging sciences of archeology, paleontology and minerology – he published several articles in these fields – and for his political tracts on such subjects as extending the franchise in England, which got him into trouble with some of the conservative authorities of the time (shaken as they were by their problems with the American colonies and later by the Reign of Terror that followed the revolution in France). He was subversive, certainly, but was opposed to violence; one of his more important writings, in 1794, was entitled “Revolutions without Bloodshed, or Reformation Preferable to Revolt.”As to medicine, Dr. Stern told us, his interests – true to form – ranged widely, from:the effects of being struck by lightning; to medical education (and the importance of being on the alert for quacks); to the study of epilepsy, for which he devised a treatment involving blood and salt.He showed a deep compassion for people, and some of his thinking was quite advanced for the period – for example, his view of hypochondria (which he said should “not be summarily dismissed” in all cases), and his insistence that one should always “respect the poor.” Perhaps most startling for the study of Parkinson’s, he thought that the palsy might be traced not just to the movement-controlling sections of the brain but to other parts of the brain as well – in some sense, foreshadowing today’s conception of PD as much more than just a movement disorder.He was also a religious man, and sometimes his devoutness conflicted with his instincts as a scientist. For example, as he was growing up, most people were convinced that the Earth had been formed precisely in 4004 BC, the product of the labors of James Usher, a respected Irish bishop. Seeking to reconcile his own skepticism about Usher’s theory with his religious beliefs in an article he published in 1822, Parkinson came up with a very clever question, which Dr. Stern quoted for us: “May not the days of creation be considered periods of infinite duration?” Although Parkinson was never widely known in his lifetime for his work on the shaking palsy, it is nice to know that he understood something of the importance of his own work. In his usual modest style, he wrote that he was happy that his writing may have “excited the attention of those who want to ease a tedious and troublesome mala read more..

Support Groups

In support of support groups

Went to my support group meeting last weekend, and I felt again like a swimmer in trouble finally getting her head above water to catch a gasp of air.  Now I can keep swimming for a while.I know that a lot of patients are nervous about support groups; the idea of seeing people in later stages of the disease is scary.  I had misgivings too, but from the first moment we walked into the room, I was relieved to discover that meeting and talking with other patients is inspirational, not frightening or depressing.  I was a bit taken aback by the average age of the group, which was listed as a "Young Parkinson's" group; a lot of these folks were over 80, most were over 60, and I think that at 47, I was the youngest in the room.  One lady laughed seeing my expression and explained, with a twinkle in her eye, that they were all young when the group was formed!  The leader of the group is younger, and since then, more younger people have joined, but I have found that age doesn't really matter.  We're all in the same boat.My husband and I both look forward to the meetings.  Not only are we very fond of all the people there, but it's also the only time we can share our experiences and feelings with people who know exactly what we're talking about.  I work very hard to not burden others with my fears, tears anger and frustration.  It's such a relief to be with people who understand these things and are not distressed by them and don't judge me by them.  It's also very therapeutic to provide some help and hopefully inspiration to others.I find the people in my group so inspirational.  I can't name names, but they know who they are.  They (patients and care givers alike) are all struggling with this disease, and they all show incredible resilience and grace under fire.  Some of them have trouble walking, talking, or doing everyday activities, but they still laugh and tell stories and sing, travel and even dance in some cases.  They listen, they share, they help and most of all, they care.I know support groups are not for everyone, but I would certainly advise every patient to try it, and their care givers as well.  It might surprise you, as it did me. read more..

Innovo Publishing-Parkinson Disease-Essential Tremor

Shaky Paws Grampa Has Arrived

... and just in time for the 6th Annual Southeastern Parkinson Disease Conference in Atlanta, Georgia from October 14-16.FOR IMMEDIATE RELEASEInnovo Publishing LLC Releases Carson and His Shaky Paws Grampa by Kirk Hall.Summary/Description: Innovo Publishing LLC released Carson and His Shaky Paws Grampa, Book 1 in the Shaky Paws Grampa series. Shaky Paws is a story about the relationship and love between a seven-year-old boy and his grandfather who has Parkinson’s disease and essential tremor. This book is available now in the U.S. and internationally in hardback, paperback, Apple iBook, Amazon Kindle, Barnes and Noble Nook, and Google Android editions.Memphis, TN – October 12, 2011 – Innovo Publishing LLC released a new title, Carson and His Shaky Paws Grampa, written by Kirk Hall and illustrated by Alison Paolini. Both the author andillustrator live with Parkinson’s disease (PD) as do an estimated 6 million people worldwide, with 50,000–60,000 new cases being diagnosed each year in the U.S. alone. The author—and approximately 10 million other Americans—also lives with another movement disorder called essential tremor (ET).Carson and His Shaky Paws Grampa, Book 1 in the Shaky Paws series, is designed to help parents and grandparents comfortably talk about the initial symptoms of PD and ET and address common questions and concerns children may express. This loving story blends well with Paolini’s charming watercolor illustrations and is written with words simple enough for a child to understand. Based on the author’s personal experience with Parkinson’s and ET, Hall’s approach to this important topic isgentle and effective in reducing concerns with children and younger family members and friends.Carson and His Shaky Paws Grampa not only deals with symptoms of PD and ET, but it touches on an innovative and effective treatment the author successfully underwent called deep brain stimulation (DBS). DBS has resulted in a remarkable quality of life improvement for the author, which he writes about in his book. Carson and His Shaky Paws Grampa is the first book in the planned Shaky Paws Grampa series and will be followed by additional titles that gently explore the more advanced stages of PD.Hall will be showcasing and signing his book at the 6th Annual Southeastern Parkinson Disease Conference in Atlanta, Georgia. The conference begins October 14 and ends on October 16. A portion of the proceeds from the sale of this book will be donated to support Parkinson’s and essential tremor research and awareness.Carson and His Shaky Paws Grampa has been enthusiastically endorsed and supported by a number of Parkinson’s and essential tremor research and philanthropic organizations including the following:“Wonderful story. So warm, thoughtful, and heartfelt. Loved it! A must-read for anyone with ET or PD.” —Catherine S. Rice, Executive Director, International Essential Tremor Foundation “. . . a charming story that provides helpful guidance to PD patients for answering their grandchildren’s innocent questions.”  —Margaret Anne Coles, Program Manager,Muhammad Ali Parkinson Center/Barrow Neurological Institute“. . . a fabulous book with remarkable illustrations.” —Cheryl Siefert, Executive Director, Parkinson Association of the Rockies “Great story that touches on DBS surgery and its dramatic positive effects.”—Ben Petrick, former Rockies/Tigers baseball player and Parkinson’s patient who has had DBS surgery“. . . demystifies Parkinson’s for the youngsters in your family.” —Joel Havemann, retired Los Angeles Times editor, author of A Life Shaken: My Encounter with Parkinson’s DiseaseCarson and His Shaky Paws Grampa, Book 1 in the Shaky Paws series, is available now in the U.S.and internationally in hardback (ISBN: 978-1-936076-91-8), paperback (ISBN: 978-1-61314-009-3), Apple iBook for iPad, iPod, and iPhone; Amazon Kindle; Barnes and Noble Nook; and Google Android editions. Large wholesale orders may be read more..

Research Initiatives-Innovative Research-Rare Disease Day-Rare Diseases

We’ve Come A Long, Long Way Together… But We’re Not There Yet!

With our rare disease research initiatives for sarcoma and myeloproliferative neoplasms, patients from all over the world can contribute directly to research and connect with others who have their disease, all while learning more about themselves and their genetics. We’re amazed at the progress these initiatives have made, but there’s still a long way to go. With Rare Disease Day this week, we hope you’ll help us spread the word to encourage participation in our innovative research efforts for rare disease. read more..

Levodopa Medication

A friend directed me to this Blog because I Have PD with tremors in my right arm. I have been taking Carbidopa-levodopa for two weeks and so far I have not noticed any significant difference.  Am I being too impatient?   Robert Response: This is certainly a question that others might shed some light on. [...] read more..

Thank You For Helping to Fight Rare Disease!

On Monday we kicked off a campaign for Rare Disease Day to raise awareness of research, especially into two rare diseases, myeloproliferative neoplasms (MPN) and sarcoma. We hoped to reach 500 participants in our MPN research initiative and 800 participants in our Sarcoma Community by today, and are happy to say that with your help [...] read more..

Fundamental Questions-Electrode Placement-Brain Stimulation-Human Prehistory-Understanding

Exact brain electrode placement for Parkinson’s patients now possible; Research opens the way to more precise deep brain stimulation

Deep brain stimulation stops limb tremors in Parkinson's patients. But positioning the stimulation electrode in the brain must be done very precisely to avoid undesired side-effects. To make this possible, a researcher in the Netherlands has developed a method for precise, external localization of the right part of the brain: the motor area of the subthalamic nucleus. She has found an ingenious way to localize this 'magic area': by using MRI to visualize the pathways in the brain that lead to it. read more..

Solving Mysteries via DNA

By Joanna Mountain, PhD. Senior Director of Research 23andMe As a geneticist at 23andMe, I combine my understanding of human prehistory and DNA variation to develop tools that help people answer one of the more fundamental questions we ask ourselves: “Where am I from?” It’s always fascinating and often surprising to answer that question, as [...] read more..

Parkinson's Disease-Pd

Letter to an Old Friend With A Husband Newly Diagnosed With Parkinson's Disease

Hi Anni,Very sorry to hear of your husband's diagnosis. Parkinson's is terribly complex, and in spite of years of study, still not well understood. For that reason I don't have faith in one thing as the "silver bullet" to take this problem down. Not coconut milk nor Coq10. PD needs to be addressed holistically, with medicine exercise, therapy, diet, and stress reduction. The good news is that given a few breaks and some discipline, a person with PD can have excellent quality of life for decades.As far as the idea that one food or supplement is somehow the missing link to good health, I have seen no evidence. As noted above PD is a complex problem that involves the interplay of genetics and environment, and even personal habits. For instance, the rate of Parkinson's Disease goes down where the rate of tobacco consumption goes up. The same is true of coffee. Given the documented health risks of tobacco, I haven't taken up smoking or chewing, but I do drink coffee with pleasure. However it's good to remember that there is not a proven causal link here, merely a shown correlation, Perhaps a side effect of PD is a low tolerance for lattes and cigars, hence the association. But as long as we are talking about correlations between Parkinson's and what we put in our bodies, I can identify two factors to consider that seem to have consensus among those who have studied this. The first is that PD has clearly been linked to pesticide exposure. So it makes sense to me to limit further contact with these poisons. (as my cousin the internist says "When you have a bruise you don't continue to hit the same spot over and over.") Hence, try to eat organic as much as possible. Second, the great Dave Heydrick, a neurologist who has PD, looked at all the studies etc. that he could find about nutrition and Parkinson's and found that the best way to eat for PD is to follow the Mediterranean diet. Not much red meat, get protein from fish, and big-time consumption of vegetables. Even if this were not good for PD it's sensible for your underlying health. Beyond diet, there is much that you can do to combat the progression of symptoms. Exercise in many forms is an exploding area of progress in the struggle of the individual against this disease. Everything from dance to bicycling to yoga seems to have its scientific adherants. This suggests to me that a variety of exercise makes sense, and I can testify that it certainly makes me feel better. And again even if it had no effect directly on PD, it is the sort of practice that will bolster one's underlying health, thus enabling one to cope more effectively with the disease. Also, exercise is a proven mood elevator. The benefits of that are obvious. 10 years into my diagnosis I still ski cross country, bicycle and hike.There are exciting developmens in physical therapy happening as well. Two I will mention, the Lee Silverman speech therapy and the related Lee Silverman Big motion therapy have both been shown to make marked improvement in the areas of speech and movement. I can testify first hand to the efficacy of the voice program which can do wonders to restore speaking ability. I have heard good things from a friend who has done the movement training.Last, stress is known to exacerbate the symptoms of Parkinson's Disease and may speed progression. Many of the already mentioned practices will help with this, but I would also add the practice of attending a support group. In adition to providing an atmosphere where one doesn't feel compelled to minimize or hide symptoms, a support group is a place where one can pick up tricks and current knowledge.There is more hope than ever of finding ways to work around Parkinson's Disease. If you guys can stay on top of the things that matter, the best is yet to come. read more..

Calcium Channel Blockers-Parkinson's Disease-Blood Brain Barrier-Dihydropyridine

Parkinson's Disease: Calcium Channel Blockers with Treatment Potential

CCBs that cross the Blood Brain Barrier for PDMost of us read of the California-Denmark study based upon many years of data from which it was observed that some calcium channel blockers have been found to decrease the PD risk factor by about 27%.  But what about those who already have Parkinson's?Today we'll skip the toxic dopamine argument between Mosharov and Surmeier etal and just take an actual look at the CCBs in the Dihydropyridine class. Specifically we show the L-type CA(2+) CCBs that can cross the blood brain barrier.  Next we'll post the discussions, the disagreement and study links. DIHYDROPYRIDINECALCIUM CHANNEL BLOCKERSAlso known asNotesAmlodipineNorvasc Perivasc, Istin, Agen, Aken Amidipin, Dailyvasc, Lopin,Amcard, AmboletCrosses BBB  3rd generationLipophilic Dihydropyridine May accumulate in brainAranidipineSapresta-AzelnipidineCalblockCrosses BBBscavenges hydroxyl radicalsbut not superxide radicalsReduced levels ofintercellular ROSBarnidipineHypoCa-BenidipineConielmay act in a similar mannerto nimodopineCilnidipineAtelec, Cinalong,Siscard, CilacarCrosses BBBdual blocker of L & N-typecalcium channelsdoes not target proteinkinase CClevidipineCleviprexCrosses BBBultra short acting intravenousCA2+ CBEfonidipineLandelAnother T-type selective CCBsome L-type inhibitionFelodipinePlendilRenedil (in Canada)Crosses BBB2nd generation    IsradipineDynaCirc, PrescalCrosses BBB8 hour half-life2nd generationLacidipineMotens, LacipilExhibits high partition coefficients intophosphatidycholineLercanidipineZandipDoes not readily cross BBB3rd generationhas a molecular design which imparts greater solubilitywithin the arterial cellular membrane bilayer, membrane-controlled kinetics and a high cholesteroltolerance factor.MandipineArtedil, Calslot, Manyper, Iperten, MandipotManivasc, Vascoman3rd generationless potential for pedal edema than other CCBsNicardipineCardene,  Carden SRCrosses BBBSimilar to Nifedipine2nd generationNifedipineAdalat, ProcardiaApo-Nifed (Canada)Novo-nifedin (Canda)Nu-nifed (CanadaCrosses BBBLipophilic DihydropyridineNilvadipineNivadilBlocks L-type channelsNimodipineNimotop, NIMONimodipinaCrosses BBBsimilar to NifedipineLipophilic DihydropyridineNisoldipineBaymycard, Sular, Syscor-NitrendipineCardif, Baylotensin,Baypress, Deiten,Nidrel, Nitrepin-PranidipineAcalasCarries grapefruit juicewarning as do other CCBsDIHYDROPYRIDINECCBsKnown asNotes read more..

Friday 2 March 2012

Neuromuscular Disorders-Nuclear Stress Test-Myasthenia Gravis-Thyroid Problems-Liver Ultrasound

I Know Lots of Ailments I DON'T Have!

Since all this weakness started in March I've been tested for just about everything you can think of. I've been tested for Myasthenia Gravis, Hemochromatosis; Lyme Disease; Thyroid problems, including an Ultrasound of my thyroid; had a Liver Ultrasound and a Biopsy; and had an Echo-cardiogram, an ABI to test for circulation in my legs, and a Nuclear Stress Test. All these tests came back with a clean bill of health.We are very thankful that so many of the really scary possibilities have been eliminated.But I'm not through with the testing yet, as my liver enzymes continue to be high, and the Creatine Kinase test I've had twice now shows elevated MB enzymes. That's why I had a complete cardiac workup. I have read online that neuromuscular disorders can cause high MB results, not just damaged heart muscle, but my Cardiologist wanted to rule out any heart involvement.I told the Cardiologist I really didn't think it was my heart, but I'll admit that hubby and I were both very relieved when the results came back OK yesterday.So now I wait for my October appointment with the Neuromuscular super specialist at UAB. We're busy collecting all the test results and CD's from the various tests I've had over the last few months.And I've been keeping a diary, too. These specialists are very difficult to get to see, and I want to be sure the appointment is as productive as possible.I still don't walk very well, and I tire out very easily, but the Essential Myoclonus continues to be basically nonexistent. So we're praying that the UAB specialist will be able to pinpoint the problem and help us deal with it. read more..

Neck Muscles

Trying to Get Comfortable

I'm still having a lot of trouble with my weak neck muscles. I've read that the human head weighs 10 pounds, and I believe it! So we bought a new soft neck wrap-around brace that's fairly comfortable, because there is an adjustment under the chin to make it smaller there. That keeps me from feeling like I'm choking, at least. My Neuro cautioned me not to use it too much, though, because it would just make my neck muscles that much weaker if I did.So I'm mostly using it in the car and at church. I need it at church, because I don't get any support from the chair in Sunday School. We're meeting in our Fellowship Hall for the next few months while our sanctuary is being renovated, so they were kind enough to move a high back upholstered chair from the vestibule downstairs for me. That did help this last Sunday, but I'm still awfully sore by the afternoon. Sitting up to eat wears me out by the end of the meal.At home I have a Tempurpedic type U shaped cushion I use on the sofa that gives me some support without doing all the work for me, and it helps a lot.We still try to get out of the house a couple of days during the week so I can walk for a while. I'm extremely slow, usually holding onto a shopping cart for help, but at least I'm getting some exercise that way.My muscle biopsy is supposed to be Dec. 8, but I still haven't received the official paperwork about it in the mail. So I'm just in a waiting game for now.I continue to run Google searches occasionally, trying to find out more about the various types of Myopathy. I was very interested to find out there IS something called Steroid Myopathy! I've been telling every doctor I've seen that all this weakness started when I was pumped full of steroids after I developed Angioedema from a drug reaction. Who knows... I may turn out to be right!I've also found that there are all kinds of Movement Disorder problems caused or aggravated by Statin drugs. Since Lipitor became more easily available today, and Statins are cholesterol lowering drugs, this is worrisome to me. I stopped taking my cholesterol meds when my liver enzymes went crazy, but there are an awful lot of people who take these drugs. We hear all these side effect warnings so much that I think most people's brains just glaze over and ignore the warnings.We had a wonderful Thanksgiving, and I do have a lot to be thankful for. Even though they drive me crazy with their slowness, I'm extremely thankful that we live close to a world renowned teaching hospital at UAB, so I can see their Super Specialists when I need them. And I'm very thankful I have a good Neurologist and a General Practitioner who take the time to listen to me and seem genuinely concerned about helping me get better.I'm thankful for a supportive family who put up with me, as I know I'm not very easy to live with. It seems like everything frustrates me nowadays. So I'm irritable and easily upset. My poor hubby earns another star in his crown every day! read more..

Thursday 1 March 2012

Certified Public Accountant-Exact Deadlines-Goal Setting-Parkinson-Body

Back to the Basics

When I worked  in my high-powered  career  as a Certified Public Accountant, I frequently set goals at year end.  My focus was on goals that were specific, measureable with exact deadlines, and that would lead to progress up the corporate ladder.It seems like a lifetime ago.Living with Parkinson’s for more than 15 years has forced me to become more flexible in my goal-setting or rather my lack of goal setting. My  goals now are quite basic: get up in the morning when I can maneuver my body out of bed, take my Parkinson’s meds every three hours during the day, walk the dog when my legs can move, respond to my email when my fingers can type, do errands when my PD meds are working, respond to telephone calls when my voice has some strength. work on my book when my brain is functioning, dance and do yoga when I have some rhythm, and prepare meals when my hands are not too shaky.My day-to-day activities currently hinge on how my Parkinson’s body and brain are working. But lately, as my Parkinson’s progresses, my body and brain have become so  unpredictable.  For example, if my voice seems  strong during  the first five minutes of a conversation, it doesn’t mean that it won’t turn weak in the sixth minute. Or when I function well with movement, I generally don’t speak well and vice versa. I know I’m greedy. I want it all—to both walk and talk and simultaneously—imagine that!Sure, I frequently push myself beyond the basics,  and I’m glad that I still have the perseverance to do so.So I won’t be staying up late tonight making a list of my goals with deadlines. More likely, my husband and I will fall asleep watching TV at 9:00 PM and set the alarm for midnight so we can welcome the new year.Happy New Year! read more..