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

Wednesday, 21 September 2011

Head Support System for Dropped Head Syndrome

Gentleman with dropped head due to Parkinson's
If you have a loved-one who has difficulty holding their head up, we may be able to help. 

We have just launched our website and have begun selling our Patent Pending band which we have named the Looking Forward Head Support System

It is easy to use and it does the job of comfortably raising and supporting one's head.

Curious? Good!

Our band is deceptively simple but as with most things simple, it took a long time to develop with many trials and errors along the way. (We should post some pictures of our disasters....or not!!). We are very proud of our end product because it works beautifully and most importantly, the wearer can put it on themselves. No fussing with buttons or zippers or anything small that requires finger dexterity. We realize that the majority of our customers will likely have shaky hands and limited mobility. But even with such challenges, they should be able to fit the band on themselves independently. 

The gentleman in the picture is the loving source of inspiration for our product. Without David, we wouldn't be here today with an incredible product ready and willing to help others with his condition. Thank you David, your love for all things knows no bounds and you continue to be my teacher.

The Looking Forward Head Support band
Here is a picture of David wearing the Looking Forward Head Support System band. The elastic material crosses his forehead and it's crossed at his back. It  closes at his front with velcro hook and loop. There is plenty of space for overlap which makes the band adjustable to fit a wide range of chest sizes, ladies included! The elastic material is very soft and does not cause any chaffing or discomfort under the armpits.

David wears his band every day for hours at a time. It makes many aspects of his life possible.

Sound too good to be true? Believe it. 

Think of eating and how you move your head to chew and swallow. Now try eating with your chin on your chest. How much are you spilling? 

Having mobile neck muscles is crucial to a wide range of daily activities; from eating and watching TV to working on the computer and being able to look your loved-one in the eyes during a conversation. If you or someone in your life is having to restrict their activities due to dropped head syndrome brought on by Parkinson's Disease or any other medical condition, visit our website to learn more about our Looking Forward Head Support System

Looking Forward to hearing from you.