Saturday, April 6, 2013

How Google saved my life

White Storks used to be a common sight in the little village in Germany where I grew up. Their return to their old nests each year heralded the true onset of spring - and a new beginning since for us kids any sighting meant a new life was about to be born somewhere in the neighborhood. Gradually over the years sightings of storks became less and less common as the moors and wetlands were being drained to make room for agriculture.


There's only one pair now, and to be sure they stayed, the villager erected a stable platform for their nest.



On a trip to Spain though I discovered where our storks had stopped and stayed on their return from their wintering grounds in North Africa. Almost every high building or church spire in the city of  Caceres on the river Tajo had one or more of their massive nests and in the surroundings were plenty of ponds and wetlands to supply their favorite prey, frogs.

Storks near Caceres, Spain

A new beginning was what I was looking for too. I am apologizing that for the past several months I have neglected visiting and leaving comments on my favorite birding blogs. I have been dealing with a critical health issue, and so, in this post, I am not going to write about birds, but about how a Google search saved my life.

I had become aware of some problems with my memory, such as blocking on names and words, and had started feeling insecure on walks. I was falling frequently without clear cause, falling on trails, on side walks, into a pond, and in an airport.There was no rhyme or reason to these falls, no stumbling or tripping that I was aware of, and fortunately no serious injuries other than bruises. My walking had turned into a choppy gait when tired and hurrying. My husband remarked on it and demonstrated to me what looked like a Parkinsonian gait.  But I knew it wasn't Parkinson's, since there was no rigidity or joint stiffness. It was also puzzling that these problems appeared only intermittently, days or weeks at a time.

The pattern didn't fit any of the common neurological diseases. My memory problems made me worry, of course, about Alzheimer's disease (AD). My dad had died of it, and I was afraid I was heading in the same direction. As a physician I had taken care of plenty of patients with advanced AD and was horrified of facing that same future, an existence devoid of any joy: the patients never smiled, laughed or showed any pleasure, only occasionally displayed anxiety or anger. It was as if a cataract was blocking their mental access to the world and finally obscured it totally, like this:



I saw a neurologist who however couldn't find anything abnormal and referred me for baseline neuropsychological testing. But it turned out to be more than a baseline. The tests looked like child's play with colorful disks, pictures, cards, photos...but the report, after several hours of testing, and the test results being abstracted into numbers and the scores compared to standard data, showed I was no longer as smart as I once was. The neuropsychologist reassured me however that the test results did not point to AD.

I had done extensive reading on neurological diseases such as Parkinson's, AD and multiple sclerosis and had found none that matched what I was experiencing. So I finally entered my symptoms into Google search and I think putting "frequent falls" first was the tip-off in that a new disease popped up: Adult Onset Hydrocephalus and specifically Normal Pressure Hydrocephalus (NPH).  Everything fit: my many falls, my instability when traversing rough terrain, my memory problems and lastly, which I actually hadn't considered a problem yet, urinary urgency (or the sprint to the BR when observing my dogs relieving themselves before bed time).

The tragedy is that the disease, although rare, is treatable but most of the time is not diagnosed. Many patients, bed-ridden or wheelchair-bound in nursing homes because of inability to walk, dementia and bladder incontinence, may actually be suffering from NPH. Dr. Harold O Conn, a former Yale hepatologist (liver specialist), eloquently recounts his own many-years-long journey as a misdiagnosed Parkinson's patient until a new neurologist came up with the correct diagnosis. He was cured with the placement of a shunt to drain off excess fluid from his brain, and since then has been devoting his remaining years to NPH research.

The CBS program 60 Minutes devoted a segment to this disease which then served as a wake-up call to many patients, their families and to physicians.



Along with the triad of symptoms - problems with gait, memory, and bladder control - diagnosis depends on showing enlarged fluid-filled lateral ventricles on CT scan or MRI. An MRI of my brain was initially read as normal. However I also happened to have had an MRI in 2003 for an unrelated problem, and a comparison between the two showed that in the current one the ventricles were significantly larger. I was so lucky to have come up with a diagnosis so early in the course of this  disease, which so infrequent, is often missed.

The next steps went pretty fast. I was referred to neurosurgery, had some more testing, and a couple of weeks later was admitted for placement of a shunt which drains the excess fluid from my brain through a thin tube under my skin to my abdominal cavity where it is being reabsorbed into the blood stream.  The symptoms related to my walking resolved within a couple of days; my memory may take a little longer. I am sure of one thing though: a Google search averted a catastrophe and gave me my normal life back!

I am looking forward to go birding again this spring, venture off trail without fear of falling. At 6 AM a couple of mornings ago I heard a Woodcock's twittering wing beats overhead and another one peenting from the wetland across the road. Shortly after, as the sky lightened, a Robin started singing. All day a Tufted Titmouse has been calling loudly advertising his availability as a mate. Last night we heard the first spring peepers in the swamp next to our house. The snow has melted and spring is here!

Cheers and happy birding!



20 comments:

  1. Hilke, I am so very happy you did that Google search and found out what was wrong early so action could be taken. It sounds like you are on the road to recovery and that is great news!

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    1. Thank you, Mia! I was surprised how the disease had affected so many small activities such as rolling over in bed or getting up from a low sofa. I suspected it but now I have the proof. Everything is back to the way it used to be!

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  2. So very happy for you! Excellent story to share!

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    1. Thank you, Beverly! The more people know about this treatable disease the better!

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  3. Thank the Lord fasting that you did the google search. I have my husband in a secure unit. He has AD and although i thought I could care for him until he no longer knew who I was, my health gave out and I had to put him into care.
    Lately I have been concerned with"losing" things around the house and forgetting people's names, although that has been happening for a long time when I get waterlogged or dehydrated.
    Isn't life fun. At least something physical can be done to relieve the pressure on your brain.
    I have missed you in the birding community. Wonderful stork photos. When we visited East Germany as the wall came down, we were thrilled to see so many storks and fields of rye interspersed with cornflowers. Monsanto hadn't sold Roundup to them yet.

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    1. Thank you, Arija. I hope to be back in full form although some of that mental block and decreased interest in birding is still hanging on. Your husband's AD must be heartbreaking for you. Does he still recognize you? As to storks, sadly in western Europe Roundup has won out.

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  4. Bonitas capturas de las Cigueñas blancas.Saludos

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    1. Thanks, Gerry and JoAnne! I am ready to go out birding again!

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  6. Hilke, I'm so happy that you found out what was wrong with you. I must share your story.

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    1. Thank you, Olli! Do share my story and spread the news of an eminently treatable Alzheimer's like condition!

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  7. Hilke, my daughter is a neurologist, I will send this post to her. I think it will be very useful to read.
    And I can agree with all your commentator of this post.
    All the best and good recover to you Hilke.
    Regards Leena

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    1. Thank you, Leena! When researching this disorder I was surprised to find that it was not included in the differential diagnosis on the Academy of Neurology site in the chapter on gait disturbance: http://www.aan.com/go/education/curricula/internal/chapter8

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  8. Hilke, I too have had very diminished interest in blogging, photography and everything else for months now but that was probably due to dehydration. I'm on limited fluids as well as a large dose of kidney kickers. It is like walking a tightrope between dehydration and water logging.
    Peter still recognises me but shocked our daughter by looking for her at six year old height when she was standing right next to him.
    Please remember that at this time you need to walk at least half an hour a day in nature, it is most beneficial for any brain anomalies as well as depression.
    Sending lots of love your way . . .

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    1. Arija, I can feel for you. I hope you have a very accurate scale to help you with your water balance. Walking - yes! I have a young dog who needs lots of exercise - he bugs me until I get up and take him for a walk. I have also dug out my pedometer that keeps a record of my miles; I try to make it 2 miles every day.

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  9. Hi Hilke

    I am so happy that you have found out the cause of your problems. I too have been having a number of problems and had been terrified that it was AD, after a year or more with a number of tests including an MRII we have determined I have Sleep Apnea which may account for some of the problems. Funny how a diagnosis of a health issues can be such a relief when one has been contemplating something so much worse. It is wonderful to know that you will be able to enjoy nature again. I have some hearing loss but in the middle range where people talk which is a bit unusual. I actually told my wife that I was happy that while my hearing aids can cope with conversations I can still hear bird song and the low drumming of a grouse without them.

    ALL THE BEST.
    Guy


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    1. Guy, for years I was wondering who was running that small motorcycle, lawn mower or sewing machine in our neighborhood until one day I heard a grouse drumming on the stonewall bordering our property! Glad you can still hear what's important. I hope you'll be able to conquer your sleep apnea! After watching a BBC documentary with Michael Moseley I have become a believer in intermittent fasting for effortless weight loss.

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  10. Hilke, I am so glad you are feeling better and found help. I know the spring birds are waiting for you. Enjoy your walks.

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