Life is never about One Thing, even when that One Thing is Parkinson's disease that has a terrible way of making itself present in every corner of your daily routine. This blog will discuss a wide range of topics about life and living. Success, love, coping, gratefulness. Parkinson's doesn't stand a chance against these powerhouses.

Wednesday, 28 September 2011

Adult Head Support. Physical and Emotional

Slight head drop 2008

Adult Head Support. Physical and Emotional

I want to talk about the physical and emotional effect that Dropped Head Syndrome has had on our family and as with any story, the best place to start is at the beginning.

Adult Dropped Head Syndrome is characterized by weakness of the muscles of the back and sometimes sides of the neck. This causes the chin to rest on the chest while standing or sitting.
We also hear terms such as Floppy Head Syndrome or Head Drop Flexion (when the head tilts forward) to describe this syndrome.

Having Adult Dropped Head can not only be physically restrictive but can also be emotionally traumatic. Not being able to look someone in the eye when speaking, to eat and swallow with comfort and go about a 'normal' workday is not an easy adjustment.

This is what happened to my husband over a period of about three years. I first noticed that his posture was not as straight as it had been and he began to look 'round shouldered'. Naturally, I'm a nag and was told so when I kept telling him to 'stand up straight', 'What am I , 3 years old?"was the comeback.

Naturally, we don't see ourselves as others see us and he was not aware of the dramatic change I was witnessing on a monthly basis. I began casually taking photos of him and making comparisons. What I saw was not only in his posture but an increased dropping of his head to a forward position.

We spoke with his neurologist who suggested a thorough neurological examination including a neck EMG ( an electromyogram) This is a test used to detect the electrical activity of muscle.) The EMG showed that David's dropped head was a symptom of his Parkinson's Disease. All other neurological aspects were ruled out.

Not all dropped head is caused by neurological disease . When a physical examination shows no neurological problems then dropped head is given a diagnosis of Isolated Neck Extensor Myopathy. (INEM) It can happen to anyone for no apparent reason.

David began physical therapy. We (I say 'WE' because when someone you love so much is going through something like this, "I" becomes 'We'.)  We bought a King's ransom in back and posture braces, neck supports and massage therapies. His head kept dropping and David could not hold his head up for more than a few seconds at a time without some support.

Treatment of Adult Dropped Head Syndrome is mainly supportive. The neck braces and collars he tried were uncomfortable and hot. They hindered chewing and swallowing and were irritating to the neck and chin. Socializing was hard. When you can't look at the person you are speaking with life is just not a lot of fun.
Seeking more help David went to Israel to see a Dr. who suggested he try Botox therapy. The Dr. had tried it on some of his patients with head Dystonia and had some success. It did not work for David and was counterproductive, making it even harder for him to lift his head. (No, in case you are wondering, he did not have a smoother , younger neck to show for the trouble.) Thankfully the effect of the Botox wore off in a few months.

Because we realized that this problem was not going to magically go away, caused me to take a long, hard look at what we were dealing with. You've heard  "If it's not broke don't fix it" I'm sure. OK, this was broke and I was determined to fix it one way or another. After years of experimentation, trial and error, make that tons of error, the Looking Forward Head Support System came to fruition.

The Looking Forward Headband and Cap system became David's way back, enabling him
to enjoy life to the fullest. To continue working, writing, socializing, dining out, and walking in the park without having to be confined to a chair is liberating.  It was a no brain-er what to call this
marvellous device. As David is heard to say "Life is good and I'm "Looking Forward to enjoying more of it."

The End of our story you ask? No way. This is just the end of the Beginning.  Marlena

Head Drop 2011

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