Hello people with Parkinson's Disease, and people who wish them well, near and far! No, make that worldwide! No, wait. Not grandiose enough. Hello to all you aforementioned people Universe wide! There. That covers it.
First up, the Telehealth report. The broadcast will be Monday, Feb. 11. The topic: Parkinson's and nutrition, room 2401 at 1:00 p.m. in the Providence
oncology wing on Piper St. Go to the second floor walk down the lonnnnnnnng
hall that stretches South from the cafe and look for room 2401 pretty
much at the end of the hall on your right.
Then
comes our regular meeting on the 16th. You'll remember we assigned
homework for this one, Each person is to come with a small but helpful
tip to share with the rest of us in handling life with PD. Early warning, the May meeting will be with local motion disorders doctor Alec Glass. This is your chance to ask question of a smart well-trained PD doctor. Some of you had questions about PD and sleep problems. These are both areas of interest for Dr. Glass. So be there, or be sorry.
5 comments:
Greetings from New York City where
I am a PD caregiver for my spouse
who was Dx in 2001 at age 54.
In NYC we have many programs to help
and guide us all with PD ,it has been
estimated in our tri state area that
the PD patient community is about 100 thousand folks, that is a heck of a
large army.
We have 3 PD support groups that
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.
We attend many PD foundation lectures and still waiting for that
promised treatment that will re establish pathways to re invigorate
the sleeping Dopamine.
Voice training and "falling well" classes are popular and now Neurologists want swallowing tests
to prevent choking and any possibility of "aspiration Pneumonia.
Keep those PD cartoons coming I only found your website by chance
seeing on our TV Alaska Coast Guard
rescue show and wondering what on
Earth do PD patients do in remote
areas if in trouble ?
Good wishes,
Mike from mid town
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.
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.
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
hospitals,we can really choose what
we wish to participate in or ignore.
My wife and me benefit from support groups here and also having when unable to travel nurses or physical therapists that visit at home.
What I don't like to find in my PD
associations and even myself leading PD Caregivers support groups (at the
very hospital where MJ Fox is treated) is apathy do to a feeling
of isolation one can have with
this diagnosis + visible tremor or
freezing, festeration walking ,etc.
Yet my friend, even in this city
of 9 million citizens some we know with PD have no family or help ,we
know of patient's falling down for
several days in their apartment and
no one knowing that they were missing and could not get up, yet
as in a remote village it seems that they to in it's own urban way
are off the grid.
My original query was viewing on TV
the Juneau hospital which is the largest hospital I think from Sitka
Coast Guard base having 2 days a
month just 1 traveling Neurologist
consulting and I don't think that
is just for Movement disorders such as PD or say MS or Dystonia.
Thanks for your input about my previous comment.
Mike from mid-town.
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?
Also, I'm just curious, are you using a speech recognition device to post to the blog?
Best,
Peter
Hello Peter,
I am sorry my blog comments for some reason have broken up paragraphs making it look like a e.e. cummings
modern poem from the 1930's.
By the way my Comfuser screen shows my writing perfectly justified.
I would think your city had many more Neurologists then in my previous mention of Sitka or some other remote area of Alaska.
I was a NEW YAWK contact and reporter for a PD forum in the UK
where many patients see a Neuro MD
every 3-4 years but are mostly ably taken care of in between those years by a PD Nurse.
We have found in attending many
PD support groups and MD lectures
many little hints such as for sleep
using 400mg of Ibuprofen perhaps"to cool the brain" b4 bedtime ,anyway my wife benefits from that for sleep and does not need Ibuprofen
frequently.
We usually here about the use of Valium or Seroquel for PD sleep disorders however one
thing my wife found out for herself
was to only take her 15mg (daily dosage) of Requip only at evening time and then again before she goes to sleep.
We figured as Ropinorole made her tired (nodding out) in the daytime let's combine it towards evening to
effect a better snooze.
The above has been like a miracle for several months now and lessoned
any cramps which are also helped by
taking the requip b4 bed with a glass of tonic water as suggested
by her MD. A good brand of tonic
water has 1% Quinine and this helps
the restless leg or cramping issues.
Hope this arrived readable.
Mike, in sub freezing weather .
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