Tuesday, April 29, 2014
The May, 2014 issue of Smithsonian magazine has a very interesting article, 'Turbo-Charging Your Brain' or 'Mindcraft' by David Noonan is very interesting. The article talks about the colaborative work of neurosurgeon Kelly Foote and neurologist Dr. Michael Okun in furthering the development, and use, of deep brain stimulation (DBS) to solve or improve many movement disorders. DBS can also be used to help with tremors associated with Parkinson's.
Everything about the brain interests me, but especially some of the movement disorders, some of which have a connection to hydrocephalus. Specifically Normal Pressure Hydrocephalus (NPH), which is all too often misdiagnosed as Parkinson's, Alzheimer's or other conditions that involve dimensia and/or gait issues. A shuffling gait and a downcast gaze are also signs of NPH. Found early, treatment can be very effective in a patient maintaining a good quality of life. However, early treatment is vital to meeting that goal. NPH gets very little discussion in the mainstream media. Just as hydrocephalus in general does.
While many in the hydrocephalus community look down on neurologists, I find it promising to see a neurosurgeon (Foote) and neurologist (Okun) working TOGETHER to find answers about what DBS can do to improve the lives of their patients. It was Okun talking in the article about a movement issue with a "shuffling gait" that caught my eye, since that is one of the key signs of NPH.
This is definitely an article to read and these are definitely some doctors to watch.
Saturday, April 19, 2014
The April meeting was great! Always nice to see familiar faces and have long distance members call in. We talked about a lot of things, including some online community groups.
I brought the educational doll along to introduce to the group. Kim took a picture of Frank and I with the doll, who remains nameless at this point. We were talking about having a naming contest in the future. We also discussed some additional ways we could increase visibility. One of those is to find a way to have a 'traveling' hydrocephalus representative, follow it online through social media venues (Facebook, Twitter) and see how far it could go, as well as what signatures it could gather.
We also discussed how to rebuild our numbers. So many members have moved out of state and don't keep in touch anymore. We really want to build up our numbers, as well as visibility in the community. It would be great to generate more interest in the group and hydrocephalus, in general. I would love to see some of the area media cover hydrocephalus, and us, more thoroughly. It would also be great to find some corporate sponsorship(s) so we could increase the published materials and events we do.
We looked at the sample shunts that were included with the doll, as well as the two posters. Kim took those home with her to keep with our other things, in storage.
We are sending Medtronic our Thank You card for the doll and the samples they sent us. We are SO appreciative. The doll certainly breaks the ice and opens doors to having the conversation about hydrocephalus with others. You can't help but notice the looks it generates. People who would otherwise not ask any questions seem more inclined to do so with the doll as the icebreaker. I love it! Thanks, again, Medtronic!!
It seems that we frequently talk about variety with hydrocephalus, which seems odd to some. We discussed the many variables with the condition and how every case really is unique. Part of that is cause. There are so many causes of hydrocephalus that one 'cure' isn't realistic. What would be applicable for a preemie wouldn't necessarily be something that would work for an adult with Normal Pressure Hydrocephalus (NPH). For a variety of reasons, those parents who are fixated on 'a cure' don't seem to appreciate the history of the shunt, or how hydrocephalus is treated now, vs the past. Many also don't seem to grasp the concept that we don't need to be 'fixed'.
It is this desperate search and a goal to 'fix' us that leads people to thinking that herbal medicine can 'cure' hydrocephalus. It also leads people to not getting treated, when treatment can be the difference between severe brain damage and minimal brain damage. Several years ago, we got a call from a woman who had self-diagnosed (via the Internet) her son with hydrocephalus after he had been abused. She called and said that the child was "in a dark room in (her) house" and was trying to get around the reality of going to an ER and having the abuse reported. Unfortunately, she was never able to be contacted again. I often wonder what happened to that child and if she took our advice, the only advice we could give her, to take the child to the nearest ER. She never answered her phone when we tried to follow up. The idea that there was a child, not being treated, with possible hydrocephalus, will always bother me.
It is a real shame that we are also seeing doctors, who should know better, making assumptions about what our lives will be like when they diagnose it during pregnancy. There is simply no way of knowing what that person will be able to accomplish in his/her lifetime. Assuming that it is going to 'be a vegetable' and be a burden to its parents is simply not living in the real world. Our group, alone, has folks who were diagnosed as infants, who went to regular school (K-12), college and have been employed, raised families and had full lives. Telling parents that their child will live in constant misery and have an uproductive life is short changing everyone--including themselves. There is no way to tell how many surgeries someone will have. Some may have a lot of them over a lifetime, while others won't.
I'll be posting some pics later.
Tuesday, April 15, 2014
Hard to believe that we are already looking at the April meeting! It will be this Saturday, April 19th, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus. Drop ins & kids are welcome to attend. We love seeing new faces!
We'll be talking about last month's Brain Awareness event at the UW and I'll be bringing the new hydrocephalus doll that was generously donated by Medtronic. I've been thinking of a lot of projects where we could use the doll to help in explaining hydrocephalus to others.
Plans are also in the works for Brain Awareness 2015.
I'm hoping to post photos from the event shortly.
Looking forward to seeing everyone!
Thursday, April 10, 2014
THE DOCTORS TV SHOW & SPINA BIFIDA--HYDROCEPHALUS (?)
Today (April 11, 2014) The Doctors aired a segment on spina bifida and actually explained what a neural tube defect is! They spoke with a young mother from Eastern Washington state about her experience, finding out her unborn daughter had spina bifida (the show didn't address hydrocephalus).
Andrea (the young mother) spoke of receiving the diagnosis and the doctor giving her the option to terminate the pregnancy, after telling her all the horrible things that were going to be her daughter's future. Hard to believe that in 2014 we still have doctors who don't see the potential of positives for us, but the negatives and that they see termination as a viable option. When the reality is that we are often quite capapble, despite the challenges we face, of doing great things.
Andrea went on to talk about a rare 'cluster' of neural tube defect births in a three county area of Eastern Washington state that the CDC has no explanation for. She spoke of drinking well water, living near an apple orchard where pesticides are used and living near the Handford Nuclear Reservation. The latter has had several cases of workers on the clean up project coming down with unknown illnesses. This tri-county area has had four times the statistical number of neural tube defect cases than anywhere else. This state also has an unusually high number of cases of MS and breast cancer. Connected? Who knows!
What has been consistant is Hanford telling the public one thing and the facts later turning out to be something else.
I've spoken about research here. I'm not against research, especially in these kinds of cases. Finding out causes and prevention for this is important. However, this is one aspect of the spina bifida and hydrocephalus issue. It is about preventing congenital hydrocephalus, not 'fixing us' with some one-size-fits-all 'cure. Finding a solution to this issue isn't the same as dealing with hydrocephalus that is acquired through brain bleeds in preemies, head injury, accident or concussive incident(s).
I'm still glad that The Doctors addressed this issue in some way, though.
Thursday, April 3, 2014
SHOULD I STAY OR SHOULD I GO?
A very interesting, provocative article is on the brainline.org site. It addresses the issue of spouses who face the changes in their relationship with their partner after a TBI (or any other disability, really). This is a rarely discussed issue, but a very important one. It can/does change the tone of a relationship, with a spouse becoming caregiver, overshadowing the spousal relationship.
This site (http://brainline.org) is great. They have a lot of valuable information for those living with brain injury and their families, friends, caregivers. Respite care is very important and also rarely addressed. Arranging for respite care is an important way for families and those around the injured person, as well as the injured person themselves, to take a break from the stresses of living day to day with the newfound limitations and changes to life.
The same site has an interesting article addressing children, education and brain injury. In general, this is a wonderful tool for families, friends, caregivers and those who are living with brain injury.