March 23rd is National Puppy Day! How did the Shar-Pei get his wrinkly skin? The question sounds like the beginning of one of Kipling’s “Just So” stories, but this and other questions were the subject of a recent genetics study. What gives some breeds their Lilliputian legs and others their lengthy limbs? Why do some [...] read more..
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..
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..
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..
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 naïve. 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..
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..
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..
