tag:blogger.com,1999:blog-8336643719537144495.post2480933691208035064..comments2023-11-27T16:58:56.996-08:00Comments on Off and On: The Alaska Parkinson's Rag: Parkinson's Forecast for February, Southcentral Alaska EditionPeter Dunlap-Shohlhttp://www.blogger.com/profile/06286710554254177150noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-8336643719537144495.post-88971431382135547212013-02-20T13:51:39.675-08:002013-02-20T13:51:39.675-08:00Hello Peter,
I am sorry my blog comments for some...Hello Peter,<br /><br />I am sorry my blog comments for some reason have broken up paragraphs making it look like a e.e. cummings<br />modern poem from the 1930's.<br />By the way my Comfuser screen shows my writing perfectly justified.<br /><br />I would think your city had many more Neurologists then in my previous mention of Sitka or some other remote area of Alaska.<br /><br />I was a NEW YAWK contact and reporter for a PD forum in the UK<br />where many patients see a Neuro MD<br />every 3-4 years but are mostly ably taken care of in between those years by a PD Nurse.<br /><br />We have found in attending many<br />PD support groups and MD lectures<br />many little hints such as for sleep <br />using 400mg of Ibuprofen perhaps"to cool the brain" b4 bedtime ,anyway my wife benefits from that for sleep and does not need Ibuprofen<br />frequently. <br />We usually here about the use of Valium or Seroquel for PD sleep disorders however one<br />thing my wife found out for herself<br />was to only take her 15mg (daily dosage) of Requip only at evening time and then again before she goes to sleep.<br /><br />We figured as Ropinorole made her tired (nodding out) in the daytime let's combine it towards evening to<br />effect a better snooze.<br /><br />The above has been like a miracle for several months now and lessoned<br />any cramps which are also helped by<br />taking the requip b4 bed with a glass of tonic water as suggested<br />by her MD. A good brand of tonic<br />water has 1% Quinine and this helps<br />the restless leg or cramping issues.<br /><br />Hope this arrived readable.<br /><br />Mike, in sub freezing weather .Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8336643719537144495.post-57955955746050891072013-02-20T11:55:31.087-08:002013-02-20T11:55:31.087-08:00Hi again, Mike. In Anchorage , where I live, we ha...Hi again, Mike. In Anchorage , where I live, we have at least 6 general practice neurologists (More if you count the Native Health Service and Veteran's administration doctors) We have one motion disorders specialist who also does sleep issues who divides his time between Anchorage and San Francisco, with Anchorage getting the bulk of his time. For a city of near 300,000, that seems fairly adequate. Once you get out of the city, though, care gets hard to find quickly. Did I answer your question?<br /><br />Also, I'm just curious, are you using a speech recognition device to post to the blog?<br /><br />Best,<br /><br />PeterPeter Dunlap-Shohlhttps://www.blogger.com/profile/06286710554254177150noreply@blogger.comtag:blogger.com,1999:blog-8336643719537144495.post-15999174686466476072013-02-18T12:57:16.295-08:002013-02-18T12:57:16.295-08:00Oh yes! my Mother in law is 96 lives down South an...Oh yes! my Mother in law is 96 lives down South and comes from a farm and she is stoic and self reliant ,born in 1917 she had nothing but her ownself for help.<br />My wife is from the South and surely people can live isolated by choice for whatever reason, I was just thinking that we here in NYC have so many resources for PD and PD therapies as we have so many patients and research <br />hospitals,we can really choose what<br />we wish to participate in or ignore.<br /><br />My wife and me benefit from support groups here and also having when unable to travel nurses or physical therapists that visit at home.<br /><br />What I don't like to find in my PD<br />associations and even myself leading PD Caregivers support groups (at the<br />very hospital where MJ Fox is treated) is apathy do to a feeling<br />of isolation one can have with<br />this diagnosis + visible tremor or<br />freezing, festeration walking ,etc.<br /><br />Yet my friend, even in this city<br />of 9 million citizens some we know with PD have no family or help ,we<br />know of patient's falling down for<br />several days in their apartment and<br />no one knowing that they were missing and could not get up, yet<br />as in a remote village it seems that they to in it's own urban way<br />are off the grid.<br /><br />My original query was viewing on TV<br />the Juneau hospital which is the largest hospital I think from Sitka<br />Coast Guard base having 2 days a<br />month just 1 traveling Neurologist<br />consulting and I don't think that<br />is just for Movement disorders such as PD or say MS or Dystonia.<br /><br />Thanks for your input about my previous comment.<br /><br /><br /><br />Mike from mid-town.<br /><br /><br /><br /><br /><br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8336643719537144495.post-60786168073558078002013-02-18T10:00:57.702-08:002013-02-18T10:00:57.702-08:00Hi Mike, there are certainly people with Parkinson...Hi Mike, there are certainly people with Parkinson's in remote areas of Alaska. I have heard from a few, and have heard of a few more. I've set up a facebook page in hopes that those scattered across the vast spaces of the state could use it as a sort of virtual support group. It hasn't seen much action. As I write this, it occurs to me (d'oh!) that one reason people go to remote areas is to get off the grid. They may not, either by choice or because of logistics, have internet access. People that choose to live in isolated, wild places are often tough, resourceful and stoic. I suspect that is how many of them cope.Peter Dunlap-Shohlhttps://www.blogger.com/profile/06286710554254177150noreply@blogger.comtag:blogger.com,1999:blog-8336643719537144495.post-80446240967567764342013-02-17T19:06:28.663-08:002013-02-17T19:06:28.663-08:00Greetings from New York City where
I am a PD careg...Greetings from New York City where<br />I am a PD caregiver for my spouse<br />who was Dx in 2001 at age 54.<br />In NYC we have many programs to help<br />and guide us all with PD ,it has been<br />estimated in our tri state area that<br />the PD patient community is about 100 thousand folks, that is a heck of a<br />large army.<br />We have 3 PD support groups that<br />meet once a week ,of course the news here is usually the Same old S___! That is the Same Old Sinemet with the addition of another great and cheaper drug called exercise and lots of it. <br />We attend many PD foundation lectures and still waiting for that<br />promised treatment that will re establish pathways to re invigorate<br />the sleeping Dopamine.<br />Voice training and "falling well" classes are popular and now Neurologists want swallowing tests<br />to prevent choking and any possibility of "aspiration Pneumonia.<br />Keep those PD cartoons coming I only found your website by chance<br />seeing on our TV Alaska Coast Guard<br />rescue show and wondering what on<br />Earth do PD patients do in remote<br />areas if in trouble ?<br /><br />Good wishes,<br />Mike from mid town<br /><br />Anonymousnoreply@blogger.com