Here's an approach that hasn't yet been tried for Parkinson's disease. And no wonder. Are you ready to warm up to trusting the healing powers of the Gila Monster? Scientists in Britain are developing a treatment for Parkinson's disease that incorporates Gila venom (or a sythetic substitute). They say the stuff works, stopping the cell loss characteristic of the Parkinsonian brain, and even improving symptoms. They cited success in 5 different rodent models of the disease. So once again, exciting news for rats.
For humans, further developments will depend on the results of a small trial being organized in Britain. One hopeful note is that this drug is already in use for diabetics, which means it can at least be used safely in treating humans.
And think of the boasting potential! "I'm a rip-snortin' Parkie with venom in mah veins! The juice of the deadly Gila Monster is mother's milk to me!"
You can have the first taste. No, really, I insist...
OK folks, time to dive once again into the wonderful world of Parkinson's vocabulary. (Previous posts on Parkinson's vocabulary here,here, and here) And isn't it like Parkinson's to sabotage your ability to speak at the same time it hands you a handful of shiny and slippery new words to master? Where to begin? Well, here is a confusing term "Parkinson's Disease Support Group" What's confusing about that? I hear you asking. It's plainly a group that comes together to further the cause of Parkinson's Disease, work to spread it and try to perpetuate it at home and abroad. In short, to support Parkinson's Disease, just like it says.
Well, what's confusing here is that is just the opposite of what these groups do. They actually exist to help those afflicted with Parkinson's to cope with their ailment and many raise money and work in other ways to end this scourge forever. So check out your local support group, and while you are there, see if you can get them to change the name to something more accurate, like Parkinson's Disease Patient Support Group. It will probably help immensely with membership.
Here's a word you don't see everyday, though as a person with Parkinson's Disease you probably experience it all the time: Hyposmia- the reduction of your sense of smell. Hyposmia? Well "Hypo" translates roughly as "not enough of" like in "hypothermia". So "osmia" must mean "smell" or "stench". Hold on while I check that out... and darned if "osmia" isn't Greek for "Smell". As it turns out "Hyposmia" is related to the word "Anosmia" the loss of your entire sense of smell. Again we can break anosmia down to its parts to get the meaning- "A"(which means "without") + "Nosmia" which is obviously (OK, I'm guessing here) Greek for "nose". Which gives us "Without a nose" or to have no sense of smell!
Another fabulous PD term is "cogwheeling". It applies to the lack of smoothness of motion in our joints, almost as though they had cog mechanisms instead of the standard-issue flesh and bone. While we're on the subject of mechanistic metaphors for Parkinson's, allow me to introduce you to a fine coinage my wife came up with: "Pinballing". This is a term she uses to describe my overmedicated, underbalanced locomotion through space, bouncing off this, running into that and generally threatening havoc wherever I lurch. He slams into a table!DING! DING! DING! 500 points! Sets a chair to spinning! (Light strobes) 650 points! bounces off the wall! BUZZ! 250 points per contact! And it looks folks, like... YES! ...Congratulations! an all-time high score! What do you win? Lucky YOU! You win another turn.
Hello friends, Here's what's coming up in the Anchorage Parkinson's world. August meeting will be held the 21st, Saturday at 3;30in the Anchorage Pioneer home. Betty Berry would be glad to lead a concurrent meeting for caregivers, She asks those interested to please email her at (firstname.lastname@example.org). She also writes
"I received a notice in the mail regarding a Senior Housing Fair sponsored by Providence to be held at the Senior Center Thursday, August 19.
Learn about housing options available in Anchorage and Mat-Su for seniors in the areas of : Independent housing - Assisted living - Skilled nursing care and more -(so states the notice.)
Thought this might be of interest to those in the Parkinson Support Group. Our upcoming meeting will be open phones, sharing tips and experiences."
For the September meeting we will have a group from Swedish Hospital in Seattle including Peggy Short, Advanced Nurse Practitioner and DBS programmer, and Dr Ron Young, a neurosurgeon with nearly 30 years of DBS experience, who is now practicing at Swedish, This meeting will be held the 18th and will also be attended by Keely Daily of Medtronic, the makers of the deep brain stimulator.
If you have a topic you would like to explore at a future meeting please email me
A final note, Yoga Instructor Karen Greenwood will soon be offering a Yoga class for the movement impaired through her Anchorage Studio. We will offer to pay class fees for members of the Anchorage Parkison's Support Group. Yoga is recommended for flexibility, strength and balance. Any of you who feel like you are better than average in these important areas, raise your hand. No hands up? Great, I'll see you all there! More details to come.
Welcometo all with an interest in Parkinson's Disease. This blog was to be an information clearinghouse for the Anchorage Parkinson's Disease Support Group, where meeting schedules, agendas, speakers etc could be found. It's still that, but has also become a sort of therapeutic hobby. So I invite you to join in the discussion and experience a little therapy as well. This will be as interesting as we as a community make it. Think loud and sound off!
Our Support group meets the third Saturday of each month at 3:30 in the afternoon. The meetings take place at the Anchorage Pioneer Home , 923 West 11th Avenue in downtown Anchorage on the fifth floor in the West lounge. You may call 350-9691 with questions about the group and meetings.
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The Knight Digital Media Center, judges of the Alaska Press Club's annual journalism awards selected The Alaska Parkinson's Rag for second place in the "Best Blog" category for 2008. Here is an excerpt of their comments:
"...Alaska Parkinson's Rag is many things: a community resource, a humor column, a science and medicine explainer. But it's also something that few blogs ever manage to be: addictive and gripping. Everything seems to work just right on this blog, and it is a powerful testament to what a person can achieve in this medium. "