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!
Thursday, December 20, 2012
Wednesday, December 12, 2012
Correction For December Meeting
So sorry about giving the wrong date for the December, 2012 meeting. We WILL be meeting this Saturday (not Monday) from 12:45 pm to 3:00 pm in the Casey Room at Swedish Hospital's Cherry Hill Campus. Look forward to seeing everyone this Saturday!
Sunday, October 21, 2012
October 2012 Meeting
The October, 2012 meeting took place on Saturday, the 20th. We talked about an array of topics, including current articles and information about hydrocephalus. One of the topics was the further study of scientists growing a shunt from someone's own cells. It would solve some of the problems/issues around shunts. Several of us at the meeting have had old shunts that allowed our own tissues to build around it, so that when they were removed, there was a 'natural' path for the fluid to be directed to.
I also commented on an article I found online, from the Dorango (sp) Herald about hydrocephalus that gave quite a bit of misinformation. My pet peeve is calling a condition a disease and continuing to perpetuate myths about what it is to live with a condition, like hydrocephalus.
Research is great, but there isn't one single cause of hydrocephalus, so there is never going to be a magic 'cure' for it. Congenital hydrocephalus has to do with folic acid levels and there is a form that has a genetic component to it. Post birth brain bleeds can be caused by any number of things--including head trauma and simply being a preemie. The 'cure' for that would be to study how to prevent brain bleeds in newborns.
Accident involving head trauma/injury is another. Avoiding accidents is the 'cure' for acquiring hydrocephalus through brain injury. We are seeing quite a few veterans coming back home with TBIs (Traumatic Brain Injury) and some have been misdiagnosed, or not diagnosed at all, so that preventable damage isn't addressed. The 'cure' is to find ways to avoid even the most minor brain trauma injuries during wartime and taking those TBIs, particularly closed head injuries, more seriously when initial treatment can prevent some damage.
It isn't just about TBIs from war zones or some dramatic accident. More research is finding that head injuries, particularly concussions, are a problem for kids, teens and young adults playing a variety of games--like football and soccer.
Normal Pressure Hydrocephalus (NPH) needs to be taken more seriously with older adults, rather than misdiagnosing it as Alzheimers or Parkinsons. Both are all too often the misdiagnosis when prompt treatment would allow someone with NPH to live a more 'normal'/familiar life.
We also had some great laughs--a lot of 'hydro humor' we are known for!
Hope to see everyone at the November 17th meeting. As always, we will be at Providence Cherry Hill Campus (17th & Jefferson) in the Casey Room from 12:45 pm to 3:00 pm. Drop ins are welcome. We offer moral support, information and education to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.
Happy Holidays!!
I also commented on an article I found online, from the Dorango (sp) Herald about hydrocephalus that gave quite a bit of misinformation. My pet peeve is calling a condition a disease and continuing to perpetuate myths about what it is to live with a condition, like hydrocephalus.
Research is great, but there isn't one single cause of hydrocephalus, so there is never going to be a magic 'cure' for it. Congenital hydrocephalus has to do with folic acid levels and there is a form that has a genetic component to it. Post birth brain bleeds can be caused by any number of things--including head trauma and simply being a preemie. The 'cure' for that would be to study how to prevent brain bleeds in newborns.
Accident involving head trauma/injury is another. Avoiding accidents is the 'cure' for acquiring hydrocephalus through brain injury. We are seeing quite a few veterans coming back home with TBIs (Traumatic Brain Injury) and some have been misdiagnosed, or not diagnosed at all, so that preventable damage isn't addressed. The 'cure' is to find ways to avoid even the most minor brain trauma injuries during wartime and taking those TBIs, particularly closed head injuries, more seriously when initial treatment can prevent some damage.
It isn't just about TBIs from war zones or some dramatic accident. More research is finding that head injuries, particularly concussions, are a problem for kids, teens and young adults playing a variety of games--like football and soccer.
Normal Pressure Hydrocephalus (NPH) needs to be taken more seriously with older adults, rather than misdiagnosing it as Alzheimers or Parkinsons. Both are all too often the misdiagnosis when prompt treatment would allow someone with NPH to live a more 'normal'/familiar life.
We also had some great laughs--a lot of 'hydro humor' we are known for!
Hope to see everyone at the November 17th meeting. As always, we will be at Providence Cherry Hill Campus (17th & Jefferson) in the Casey Room from 12:45 pm to 3:00 pm. Drop ins are welcome. We offer moral support, information and education to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.
Happy Holidays!!
Sunday, September 16, 2012
SEPTEMBER MEETING
September is National Hydrocephalus Awareness Month!
The September meeting was nice. It was great seeing a new face. Hopefully we will see more in the future.
We discussed a lot of things at the meeting, specifically about shunts and the very real possibility of future surgeries, as well as living without shunt problems for long periods. Basically, the old insurance belief that we ALL have shunt failures every 18 mths, requiring surgery, isn't accurate. Those of us living with (& without) shunts know that things could always change at a moment's notice, but life is definitely worth living to its fullest!
We also talked a bit about the history of the modern shunt and how life was before the early 1950's.
We also discussed a case in the news this last week, updating information about Christopher Harris, a young man who was severely brain damaged due to an overzealous police officer's actions almost 3 yrs ago. The officer's actions took Mr. Harris from a young man in the early years of his career & a newlywed, to being severely brain damaged, requiring round the clock care for the rest of his life.
Hard to believe that there are only three meetings left in 2012! 2013 will be here before we know it. I'm including the remaining 2012 schedule here. We always meet on the third Saturday of each month in the Casey Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson in Seattle) from 12:45 pm to 3:00 pm. Drop ins and children are welcome. We welcome anyone wanting information about living with the condition of hydrocephalus, however it is acquired.
The September meeting was nice. It was great seeing a new face. Hopefully we will see more in the future.
We discussed a lot of things at the meeting, specifically about shunts and the very real possibility of future surgeries, as well as living without shunt problems for long periods. Basically, the old insurance belief that we ALL have shunt failures every 18 mths, requiring surgery, isn't accurate. Those of us living with (& without) shunts know that things could always change at a moment's notice, but life is definitely worth living to its fullest!
We also talked a bit about the history of the modern shunt and how life was before the early 1950's.
We also discussed a case in the news this last week, updating information about Christopher Harris, a young man who was severely brain damaged due to an overzealous police officer's actions almost 3 yrs ago. The officer's actions took Mr. Harris from a young man in the early years of his career & a newlywed, to being severely brain damaged, requiring round the clock care for the rest of his life.
Hard to believe that there are only three meetings left in 2012! 2013 will be here before we know it. I'm including the remaining 2012 schedule here. We always meet on the third Saturday of each month in the Casey Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson in Seattle) from 12:45 pm to 3:00 pm. Drop ins and children are welcome. We welcome anyone wanting information about living with the condition of hydrocephalus, however it is acquired.
- October 20th
- November 17th
- December 15th
Saturday, September 1, 2012
September: Hydrocephalus Awareness Month
Hard to believe that September is here already! How 2012 is flying by.
September 1st, the beginning of Hydrocephalus Awareness Month. I sent a reply to Seattle's Mayor McGinn about it, as part of a response to his newsletter that I recieved in today's email.
I'm hoping to make contact with someone in the Neuro department at Swedish Hospital this week about ideas for bringing more awareness to hydrocephalus in the community during the month.
Look forward to this month's meeting on the 15th.
Take care.
September 1st, the beginning of Hydrocephalus Awareness Month. I sent a reply to Seattle's Mayor McGinn about it, as part of a response to his newsletter that I recieved in today's email.
I'm hoping to make contact with someone in the Neuro department at Swedish Hospital this week about ideas for bringing more awareness to hydrocephalus in the community during the month.
Look forward to this month's meeting on the 15th.
Take care.
Saturday, August 18, 2012
AUGUST MEETING
This was a wonderfully productive meeting! We discussed Hydrocephalus Awareness Month (Sept) & how to promote it & the group. We brainstormed some ideas. Unfortunately, the state of Washington doesn't do anything to promote Hydrocephalus Awareness Month, or hydrocephalus in general. I tried generating some interest in it several months ago, hoping for a more supportive response. Disappointing, but only proves that there is a need for more public awareness!
We also discussed aspects of shunts--in terms of pain, itching & post-surgical responses we've had. Very interesting.
We also discussed Kathi Goertzen's passing & her courageous fight against her agressive (benign) tumors for the last 14 years. Our group's thoughts & prayers go out to her & her family. Her public memorial will be August 19th at 1 pm, at Fisher Pavillion near the Seattle Center. Specifics can be found at KOMO TV's website.
Along the same lines, we talked about how some tumors can cause hydrocephalus.
We also discussed different types of seizures some of us have.
Again, it was a very interesting, productive meeting. We look forward to the Sept. meeting!
We also discussed aspects of shunts--in terms of pain, itching & post-surgical responses we've had. Very interesting.
We also discussed Kathi Goertzen's passing & her courageous fight against her agressive (benign) tumors for the last 14 years. Our group's thoughts & prayers go out to her & her family. Her public memorial will be August 19th at 1 pm, at Fisher Pavillion near the Seattle Center. Specifics can be found at KOMO TV's website.
Along the same lines, we talked about how some tumors can cause hydrocephalus.
We also discussed different types of seizures some of us have.
Again, it was a very interesting, productive meeting. We look forward to the Sept. meeting!
Thursday, August 16, 2012
August Meeting Coming 8/18/12
There is going to be a lot to talk about this month. The subject of the passing of Kathi Goertzen, a beloved Seattle icon, this week, will definitely be a topic of conversation. Kathi lost her fourteen year battle with a benign brain tumor this week. Brain tumors, benign or not, can be a cause of hydrocephalus.
The group's thoughts are with Kathi's family, both her professional and personal.
Personally, I first met Kathi in 1981 when she was a reporter, at the closing of Queen Anne High School, a school we both attended at different times. Over the years I watched her go from reporter to news anchor, being a community fixture. Over the years, we met in passing a few times. It was always a pleasure. The last time was a few years ago when I participated in a program at KOMO TV, with a panel of viewers & the news team. Again, it was a pleasure.
We are also going to be talking, again, about brain injury being a cause of the onset of hydrocephalus with another incident of a suspect being hit about the head. The message needs to be getting to those who set the tone for the SPD. But they don't seem interested in this area of discussion, unfortunately.
Last month, we discussed the use of brain scans on children, after an ER doctor, allegedly, refused to prescribe a scan to a young boy who had fallen from a second or third story window. The doctor, allegedly, said that they didn't do scans because of the radiation exposure to a child. Unfortunately, in this case, the child (who presented with classic head injury symptoms) was sent home & died. There are scans that don't expose the patient to large doses, or any radiation! I find it difficult to believe that the doctor in question didn't know that or that he was unaware of the classic symptoms of head injury. The autopsy results were that the child DID have a brain bleed.
Looking forward to this month's meeting!
The group's thoughts are with Kathi's family, both her professional and personal.
Personally, I first met Kathi in 1981 when she was a reporter, at the closing of Queen Anne High School, a school we both attended at different times. Over the years I watched her go from reporter to news anchor, being a community fixture. Over the years, we met in passing a few times. It was always a pleasure. The last time was a few years ago when I participated in a program at KOMO TV, with a panel of viewers & the news team. Again, it was a pleasure.
We are also going to be talking, again, about brain injury being a cause of the onset of hydrocephalus with another incident of a suspect being hit about the head. The message needs to be getting to those who set the tone for the SPD. But they don't seem interested in this area of discussion, unfortunately.
Last month, we discussed the use of brain scans on children, after an ER doctor, allegedly, refused to prescribe a scan to a young boy who had fallen from a second or third story window. The doctor, allegedly, said that they didn't do scans because of the radiation exposure to a child. Unfortunately, in this case, the child (who presented with classic head injury symptoms) was sent home & died. There are scans that don't expose the patient to large doses, or any radiation! I find it difficult to believe that the doctor in question didn't know that or that he was unaware of the classic symptoms of head injury. The autopsy results were that the child DID have a brain bleed.
Looking forward to this month's meeting!
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