Showing posts with label Seattle. Show all posts
Showing posts with label Seattle. Show all posts
Thursday, June 16, 2016
June Meeting
This Saturday (June 18) will be this month's meeting. Sorry about having to cancel last month's meeting. As usual, we will be in the Casey Conference Rm at Swedish Cherry Hill campus from 12:45 pm to 3:00 pm.
Part of the reason for last month's cancellation was my arm injury. I dislocated my left arm in an accident in the Safeway parking lot. It involved our car, a lock on one of the doors, a shopping cart and a pointed curb. I got a dislocated shoulder, black eye, sprained wrist & sprained knee out of it. Just got rid of the sling today and I start physical therapy tomorrow.
I do want to say that the Seattle Fire and the EMTs did a great job.
I've been keeping up with my Facebook page and the LinkedIn page.
Fortunately (?), now I have the ability to be on the computer a bit longer than I was there for awhile.
I look forward to seeing everyone on Saturday!
Wednesday, October 14, 2015
Reminder: October Meeting on 10/17
Just a quick reminder, this Saturday (10/17) will be the October meeting, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle). Drop ins & kids are welcome. It should be an interesting meeting. Some members will be calling in and we'll be talking about 'Stir'!
Wednesday, July 23, 2014
July Meeting Update
We discussed ways to increase awareness of the group, our mission and hydrocephalus in general. There are some tentative plans in the works for National Hydrocephalus Awareness Month in September, which is fast approaching.
We also have discussed more plans for the more distant future, including the 2015 September awareness month possibilities.
There is a possibility that we could do a Crowd Funding campaign to raise funds for an awareness campaign as well. Specifics aren't firmed up, but a September campaign would be great--this year or next.
Lots of potential.
Tuesday, December 17, 2013
DECEMBER MEETING
Happy Holidays! This will be the final meeting of 2013--the year went by SO fast. I'll be posting the 2014 schedule shortly. December 21st, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus will be our meeting this month. As always, drop ins are welcome, as well as children & anyone wanting information about hydrocephalus.
I also want to take the opportunity to thank Swedish Hospital for their generous assistance in providing us with meeting space for the last several years. It has been great having the space and being available to those in need of moral support in living with hydrocephalus. We look forward to many more years of service to the community and the assistance of Swedish in that effort.
I would also like to thank the many friends of the group, and family members, worldwide, who have helped make the group a success.
I'm looking forward to 2014 with great anticipation. Look forward to seeing new and familiar faces in the coming year.
Tuesday, October 15, 2013
OCTOBER MEETING--REMINDER
OCTOBER MEETING--REMINDER
October 19th (Saturday) will be this month's meeting. As always, we will be meeting from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle). Anyone with an interest or questions about hydrocephalus is welcome to attend. We welcome drop ins & kids. We look forward to seeing new & familiar faces.
Thursday, January 17, 2013
January Meeting Cancelled
Unfortunately, we are having to cancel the January meeting due to illness. Several of us have this 'bug' going around and don't want to infect others. We WILL have the February meeting, as scheduled.
Hope to see everyone in February!
Hope to see everyone in February!
Thursday, December 20, 2012
December 2012 Meeting
Hard to believe that this was our final meeting for 2012! As always, we had a great discussion about aspects of living with hydrocephalus, as well as a small holiday celebration.
In the last month I've been doing a bit of research about hydro research and spoke with a very interesting researcher. It is always great talking to someone about our perspective, of living with the condition. Then there is the issue of condition vs disease. The neuro-science folks may use the terms interchangeably, but many of us see a HUGE difference between the two! It is one of the reasons why I am always saying in my emails about our group that we are there for families, friends, caregivers & those (of all ages) living with the condition of hydrocephalus, because we aren't 'diseased' we are living with a condition & all the complexities that go along with that.
Some of the research being done is great & very interesting. I am most interested in the possibility of science being able to 'grow' shunt tubing in the lab, using the patient's own cells. What I'm NOT a fan of is the idea that there is one 'magic pill' that will 'cure' us. There are simply too many variables with hydro to have one 'cure'. There is effective treatment that is improving all the time--shunts. The cause of hydro from a brain bleed is very different from hydro caused by a neural tube defect. There are also those accidents and injuries during contact sports or car accidents. The only way to 'cure' those causes is prevention. Explaining what neural tube defects are & how women of child bearing age can prevent them is the only way to prevent, or lessen the risk of congenital hydro & spina bifida. Finding ways to lessen, or eliminate, brain bleeds in preemies is another way to prevent the hydro complication. Gaining a healthy respect for head injury & the potential damage is all about prevention of life altering conditions like hydro. Along those same lines, we are continuing to see veterans return from being in harm's way far too often with acquired hydro, sometimes undiagnosed.
Not everyone with a shunt has horrible complications either. While I know many who have had complications, I also know those who have overcome those complications and live very full lives. It will be 30 yrs ago in January since I had any hydro related surgery! I know that isn't true for everyone, but it also isn't true for everyone that we have complications every 18 mths or so either. There are challenges, but it is SO worth overcoming those challenges & living the best life possible, without perpetuating the myth that we are all somehow suffering or living less than productive lives!
I will be posting the article that appeared in Parade magazine several weeks ago, about Normal Pressure Hydrocephalus (NPH). It has generated calls to us with loved ones asking a lot of questions about how they can make sure that their loved one has the proper diagnosis. It has surprised others that there is a 5-10% rate of misdiagnosis, with NPH being misdiagnosed as Alzheimers or Parkinsons. Treated early, with a shunt, outcomes can be quite positive, with less potential brain damage than those left untreated. Some patients with Alzheimers or Parkinsons have also been found to benefit from a treatment of shunt.
I will also be posting the 2013 meeting schedule shortly. The schedule is going to remain the same--the third Saturday of each month, at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle), in the Casey conference room from 12:45 to 3:00 pm. We welcome families, friends, caregivers & those (of all ages) living with hydrocephalus. Drop ins & kids are welcome to attend.
As always, this time of year, we're looking for volunteers and donations for the Brain Awareness Open House event at the University of Washington. It is a one day event reaching several hundred students from Western Washington state, parents & teachers. It is a great outreach project for us. It is part of the Brain Awareness Week program. Hopefully, we will have a lot of 'stuff', in addition to our informational material and members to talk about living with the condition, as we did last year.
Fortunately, 2012 has been good to our members. We haven't had problems with our hydro this year & hopefully, 2013 will be the same!
Happy holidays! Happy New Year!
In the last month I've been doing a bit of research about hydro research and spoke with a very interesting researcher. It is always great talking to someone about our perspective, of living with the condition. Then there is the issue of condition vs disease. The neuro-science folks may use the terms interchangeably, but many of us see a HUGE difference between the two! It is one of the reasons why I am always saying in my emails about our group that we are there for families, friends, caregivers & those (of all ages) living with the condition of hydrocephalus, because we aren't 'diseased' we are living with a condition & all the complexities that go along with that.
Some of the research being done is great & very interesting. I am most interested in the possibility of science being able to 'grow' shunt tubing in the lab, using the patient's own cells. What I'm NOT a fan of is the idea that there is one 'magic pill' that will 'cure' us. There are simply too many variables with hydro to have one 'cure'. There is effective treatment that is improving all the time--shunts. The cause of hydro from a brain bleed is very different from hydro caused by a neural tube defect. There are also those accidents and injuries during contact sports or car accidents. The only way to 'cure' those causes is prevention. Explaining what neural tube defects are & how women of child bearing age can prevent them is the only way to prevent, or lessen the risk of congenital hydro & spina bifida. Finding ways to lessen, or eliminate, brain bleeds in preemies is another way to prevent the hydro complication. Gaining a healthy respect for head injury & the potential damage is all about prevention of life altering conditions like hydro. Along those same lines, we are continuing to see veterans return from being in harm's way far too often with acquired hydro, sometimes undiagnosed.
Not everyone with a shunt has horrible complications either. While I know many who have had complications, I also know those who have overcome those complications and live very full lives. It will be 30 yrs ago in January since I had any hydro related surgery! I know that isn't true for everyone, but it also isn't true for everyone that we have complications every 18 mths or so either. There are challenges, but it is SO worth overcoming those challenges & living the best life possible, without perpetuating the myth that we are all somehow suffering or living less than productive lives!
I will be posting the article that appeared in Parade magazine several weeks ago, about Normal Pressure Hydrocephalus (NPH). It has generated calls to us with loved ones asking a lot of questions about how they can make sure that their loved one has the proper diagnosis. It has surprised others that there is a 5-10% rate of misdiagnosis, with NPH being misdiagnosed as Alzheimers or Parkinsons. Treated early, with a shunt, outcomes can be quite positive, with less potential brain damage than those left untreated. Some patients with Alzheimers or Parkinsons have also been found to benefit from a treatment of shunt.
I will also be posting the 2013 meeting schedule shortly. The schedule is going to remain the same--the third Saturday of each month, at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle), in the Casey conference room from 12:45 to 3:00 pm. We welcome families, friends, caregivers & those (of all ages) living with hydrocephalus. Drop ins & kids are welcome to attend.
As always, this time of year, we're looking for volunteers and donations for the Brain Awareness Open House event at the University of Washington. It is a one day event reaching several hundred students from Western Washington state, parents & teachers. It is a great outreach project for us. It is part of the Brain Awareness Week program. Hopefully, we will have a lot of 'stuff', in addition to our informational material and members to talk about living with the condition, as we did last year.
Fortunately, 2012 has been good to our members. We haven't had problems with our hydro this year & hopefully, 2013 will be the same!
Happy holidays! Happy New Year!
Friday, January 14, 2011
Working On Getting Donations & Volunteers For Brain Awareness Open House in March
Spent this week planning for our first meeting of 2011! I also worked on getting donations, volunteers and suggestions for our booth at this year's Brain Awareness Open House. Can't believe that this will be our 14th (?) year participating in the event! Look forward to seeing all the middle and high school kids at the event, as always. Every year it is so rewarding being able to let them know how complex & resilient the brain is!
Still looking for more suggestions to make the booth the best it can possibly be.
I'll be posting our 2011 meeting schedule shortly.
Still looking for more suggestions to make the booth the best it can possibly be.
I'll be posting our 2011 meeting schedule shortly.
Saturday, December 18, 2010
Final Meeting For 2010
December 18, 2010
Can't believe it is almost the end of 2010! We had a great meeting, thanks to everyone who attended. We had some great conversation about hydrocephalus, the accomplishments we made in 2010 and our next year of monthly meetings.
We will still be meeting on the third Saturday of each month in the Casey Room at Swedish Hospital's Cherry Hill Campus (500 17th Avenue, Seattle) from 12:45 - 3:00 pm. We welcome drop-ins.
We also talked a bit about our upcoming involvement in the Brain Awareness Open House, being held on March 1, 2011 at Museum of History & Industry (MOHAI). This will be our 14th year having a booth at the event. A great way to reach out to parents, teachers and kids (middle & high school). We are still looking for items, brain oriented, for the booth. As always, we are looking forward to taking part in the BAW event.
Happy Holidays! Happy New Year!
Can't believe it is almost the end of 2010! We had a great meeting, thanks to everyone who attended. We had some great conversation about hydrocephalus, the accomplishments we made in 2010 and our next year of monthly meetings.
We will still be meeting on the third Saturday of each month in the Casey Room at Swedish Hospital's Cherry Hill Campus (500 17th Avenue, Seattle) from 12:45 - 3:00 pm. We welcome drop-ins.
We also talked a bit about our upcoming involvement in the Brain Awareness Open House, being held on March 1, 2011 at Museum of History & Industry (MOHAI). This will be our 14th year having a booth at the event. A great way to reach out to parents, teachers and kids (middle & high school). We are still looking for items, brain oriented, for the booth. As always, we are looking forward to taking part in the BAW event.
Happy Holidays! Happy New Year!
Friday, December 10, 2010
Introduction
I am the p.r. director for the Hydrocephalus Support Group, Inc. located in Seattle, Washington. The support group offers moral support and education to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus. Most of those we serve are in Western Washington state.
The group meets monthly in the Casey Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson), located in the Dining Room, from 1:00 pm -3:00 pm. Drop ins and children (w/parents) are welcome.
In March, 2011 we will be taking part in the University of Washington's Brain Awareness Week Open House, doing outreach and education with children, teachers and parents from Western Washington. This will be our 14th year taking part. It is always rewarding and an event we look forward to every year!
The group meets monthly in the Casey Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson), located in the Dining Room, from 1:00 pm -3:00 pm. Drop ins and children (w/parents) are welcome.
In March, 2011 we will be taking part in the University of Washington's Brain Awareness Week Open House, doing outreach and education with children, teachers and parents from Western Washington. This will be our 14th year taking part. It is always rewarding and an event we look forward to every year!
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